Post Thirty Three. This Is How We Become The #MillionsMissing – A New Project For 2019.

I have decided to undertake a project this year. I wanted to see just how isolated I have become since having ME, so, for the whole of 2019 I will be keeping a record of the time I spend in the company or vicinity of other people.

Why?

As well as satisfying my own curiosity, my aim with this project is to help others understand the extent of the isolation I live in. I want to help people understand just how severely ME limits my ability to interact, communicate with and be around people. I’ve explained before that ME is defined by a pathological inability to produce energy on demand at a cellular level. Unlike the common misconception, ME is not an illness that causes me to feel tired, it’s an illness that limits my energy production. I think most of the people I know can understand how this affects my ability to undertake various physical and cognitive activities, but I’m not sure they know just how severely it affects my ability to simply be around people. I have gone into this before, especially with my last post, Post Thirty Two. Some Things I’d Like My Visitors To Be Mindful Of., in which I explained how carefully I have to plan and manage the time that I spend around people. I think this post and this project as a whole tie in well with Post Thirty Two, but with this project, I’ll actually be able to show them just how drastically my reality has changed due to having ME.

What this project is not about.

Importantly, I want to be sure that people understand that the isolation I live in is not a choice I have made, it’s not because I lack ‘motivation’, nor is it caused by neglect. This project is not a reflection on any of the people in my life, it is not about lost or fading friendships or a lack of offers. I have lost friends, it’s true, but that is irrelevant to this project. I’m not lacking people, I don’t need to join a befriending scheme, what I am lacking is energy, I am simply too unwell to be around people.

This project is not about loneliness. I wouldn’t have the faintest idea how I could calculate the amount of time I feel lonely. It’s too subjective. How would I accurately log a feeling, especially one that comes and goes in waves? Of course I do feel lonely at times, sometimes excruciatingly so, but this project is about isolation, not loneliness. The results of this project will say nothing about how often I did or did not feel lonely in 2019. It is not a project about my emotions, I have no interest in doing that.

It’s not a scientific experiment, it’s a personal project. My counsellor likened it to more of an evolving art installation, which I like the sound of.

How is this going to work?

To figure out how my current level of isolation compares with the time I spent in the company of people before I had ME, I came to a figure that I think represents an average month for me, pre-ME. I based this on the couple of years immediately before I became unwell, from 2012 – 2014.

First, let’s give you an idea of what my life was like in those pre-ME years, in terms of the time I spent around other humans. I worked full-time for a homelessness charity called Cyrenians. My job was based in a small depot in Leith, Edinburgh, with a small team of staff and many volunteers. I also lived in Leith and had a ten minute walk to and from work everyday. I owned a beautiful flat in the Shore area, a top/fifth floor tenement flat with ninety eight stairs to my front door, in which I lived alone. I attended classes at the gym pretty regularly, both Spin and Body Pump. My gym was also in Leith, just round the corner from my work. I also attended an evening class, wood carving, which was again, in Leith. I volunteered with another couple of homeless charities. I socialised with friends on a weekly basis, whether in the pub, a restaurant, a coffee shop, or at the cinema, a concert or the theatre. I also enjoyed spending time alone (but surrounded by people) – reading a book in a coffee shop, exploring museums and art galleries, and I liked to make use of Edinburgh’s many green spaces, Holyrood Park, Arthur’s Seat, Princes Street Gardens, etc. I spent time with my family – my two sisters, my mum and my niece and nephew, who I babysat for fairly regularly. To get around Leith I mainly walked, but to go to the city centre, or anywhere else, I would use the bus. I travelled as much as I could. In those couple of years before ME I especially enjoyed travelling around the UK to see my favourite bands – my favourite bands rarely came to me, so I had go where they went. By turning a concert into a short holiday I got to see parts of the UK I’d never been to before, including Manchester, Cornwall, Halifax and Brighton. I also spent time in London and Kent roughly once a year. I went to Iceland for the first time and I completely fell in love with Reykjavík, and have returned a few times since then. This was my life pre-ME, in terms of the activities I did that involved being with or around other people. It was fun and I was enjoying myself, and despite being an introvert, it was full of people, but perhaps more importantly, it was only full of people as and when I chose to be around people. I was afforded that luxury before I had ME, now my illness dictates when I can be around people.

So, I calculated that, pre-ME, I spent at least 253.4 hours per month in the company of other people. I broke it down as follows…

  • An 8 hour work day Monday to Friday, and 4 hours every fourth Saturday. I haven’t included any overtime.
  • I estimated 18 hours per week for the other activities in which I was in the company of, interacting with, or in the vicinity of other people, as described above.
  • I lived alone pre-ME and I still do, so my time spent around other people will automatically be lower than anyone who doesn’t live alone.

I plan to write a blog post with the results of this project early-2020, or I might coincide it with International ME Awareness Month in May 2020, but I thought I would give you a sneak peek at January’s data.

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The total time I spent with or around other people in January 2019 was 22 hours. Of this time, 7 hours and 5 minutes were outside of my home.

So, as you can see, I have created categories for each person/set of people – my mum, who is also my carer, other family members, friends, medical, counselling, acupuncture, my cleaner, The Super Store (a shop between my house and my counsellor’s office) and the Sainsbury’s delivery man (for non UK readers, Sainsbury’s is a supermarket).

Each of January’s categories in more detail. 

My mum/carer – 16 hours

It’s important to note that when my mum visits me, it’s not always a social visit, these 16 hours include the time she spends doing various jobs for me around my home – washing my dishes, unpacking groceries, changing my bedding, filling my pill boxes, emptying my bins, etc. So when she’s here for an hour, possibly only half of that time will be spent in conversation. When I’m not feeling well enough for a proper visit she will leave after having done whatever jobs I need doing. So sometimes her visits will be as short as 5 minutes, if she’s only dropping off some shopping, for example.

Other family – 15 minutes

The 15 minutes of ‘other family’ time were when each of my sisters (one with her boyfriend and the other with my niece and nephew) attempted to visit me but I was too unwell each time, so could only have a quick hug/chat by the front door.

Friends – 0

I wasn’t well enough in January to see any friends or do anything beyond the essential (medical, counselling, my mum’s visits etc).

Medical – 1 hour

I had an appointment at Borders General Hospital in January. I have included the time spent in the waiting room. This entire outing took 3 hours, with around 1 hour, maybe a bit longer, being for the actual hospital bit, the rest being the time it took to get there and back. My mum drove me, so I included the travel time in the ‘mum’ category.

Counselling – 3 hours

My counselling appointments are 50 minutes long, but I’ve rounded it up to 1 hour, to include the time I spend walking there and back. This may seem insignificant, but my walk to and from counselling, even though I’m not interacting with any of the people I pass on the way, is the time of the week I feel the least isolated. It’s not just because I can see the other people, they can see me. I’m present, I’m not invisible, I’m out there, existing, not only in my life, but in the lives of the strangers who walk past me on the street. I would compare this to the time I spent walking to and from work, or the gym, or my evening class, or on the bus to and from the city centre in my pre-ME life. This is time spent in the vicinity of other people, but not interacting with them.

Acupuncture – 1 hour 20 minutes

My acupuncture appointments are in my home, roughly every two or three weeks. The actual acupuncture session is 30 minutes, but of course it takes a few minutes to update the acupuncture man with my symptoms since last seeing him and for him to put the needles in, so I log each acupuncture appointment as 40 minutes.

Cleaner – 15 minutes

My cleaner comes round when I have my counselling appointments, and I include the 5 minutes I spend chatting with her before I leave for counselling. Because I can only manage one ‘outside’ appointment per week, if I have a medical appointment, I will cancel that weeks counselling appointment. On those days, when I don’t have counselling, but I still have my cleaner round, I’ll retire to my garden shed to get out of her way, which is nicer than it sounds, my shed is quite lovely.

The Super Store – 5 minutes

The Super Store is a small health food shop just round the corner from my house. I don’t go in often, only occasionally when I’m passing on the way home from counselling, and when I do, I always feel noticeably worse the following day, so I really shouldn’t. I usually have my mum buy what I need from this shop, but sometimes it’s nice to go in and browse and do my own shopping, as though I’m an independent adult.

Sainsbury’s delivery man – 5 minutes

Finally, I included the short time I spent in the company of the Sainsbury’s delivery driver. It might not seem worthy of including, but if I haven’t seen anyone for a few days, those few minutes of interaction can make all the difference.

Outside

Of the total 22 hours I spent in the company of other people in January, 7 hours and 5 minutes of that time were outside of my home – this includes my one medical appointment at Borders General Hospital and the time it took for my mum to drive me there and back, my counselling appointments, and one 1 hour drive with my mum for a change of scenery. This 7 hours and 5 minutes isn’t just the only time I spent outside of my home around other people, but the only time I spent outside of my home in January full stop. This is why I describe myself as ‘mainly housebound’, as opposed to simply ‘housebound’, many people whose ME is more severe than mine are unable to leave their homes, or even their beds, at all. I don’t include the time I spend in my garden as being ‘outside’, I count that as being at home.

Some percentages. 

If the online percentage calculator I found was right (with my ME foggy brain I am not even going to attempt to work out the percentages myself), this means that I spent 91.31% less time in the company of other people in January than I did per month before I had ME.

The pre-ME figure of 253.4 hours was spent mainly outside of my home, so this means that the time I spent outside of my home in January was reduced by 97.11%, when compared to my pre-ME life.

On average there are 730 hours in a month, so based on January’s data, in which I spent 7 hours and 5 minutes of it outside of my home, I am 99% housebound.

I look forward to seeing how these percentages differ as each month passes.

What’s next.

I plan to write a blog post in 2020 with the results of this project. I don’t know yet how I will present the information, what observations I’ll make or what conclusions I will draw. It will be an evolving project, what seems important to me now may not seem so important when it’s time to bring all the information together, and I will add new categories as and when I need to. Hopefully the end result will be of some value, but even if it’s not, it’s a good excuse to play with spreadsheets and percentages, which despite being cognitively draining, I really enjoy!

About the title – This Is How We Become The #MillionsMissing.

I was given the idea for the title of this project by @JBKid7 on Twitter. When I shared my idea for the project with my January stats, @JBKid7 shared it with the caption “This is how ME affects us. This is how we become the #MillionsMissing.”.

If you don’t already know, #MillionsMissing is a global campaign for ME health equality. Lead by #MEAction, the first global protest/demonstration took place in May 2016 and has since grown each year to an astounding 100+ cities and virtual protests in 2018. We protest around the world for increased government funding for research, clinical trials, medical education and public awareness. Most people with ME are too ill to attend the demonstration so they send in shoes with a label summarising their story to symbolise their support. The empty pairs of shoes are displayed at the protest as a striking visual image of the #MillionsMissing.

The name #MillionsMissing symbolises the millions of people with ME who miss out on everyday life, and the millions of pounds missing from biomedical research into this devastating illness. In terms of missing out on everyday life, I thought this would be the perfect title for my project. There are approximately 17 million people with ME worldwide, 250,000 of them here in the UK. That’s a lot of people missing out on everyday life. We are the #MillionsMissing.

 

NEWS

Health Rising. Metabolomics Study Suggests Chronic Fatigue Syndrome May Be Oxidative Stress/Low Oxygen Disease

https://www.healthrising.org/blog/2019/02/08/metabolomics-chronic-fatigue-syndrome-oxidative-stress-low-oxygen/

Frontiers. Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

https://www.frontiersin.org/articles/10.3389/fped.2019.00012/full

PLOS Blogs. Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much

https://blogs.plos.org/absolutely-maybe/2019/02/08/consumer-contested-evidence-why-the-me-cfs-exercise-dispute-matters-so-much/

Bustle. How To Find A Doctor When You Have ME/CFS, Because The Process Can Be Challenging

https://www.bustle.com/p/how-to-find-a-doctor-when-you-have-mecfs-because-the-process-can-be-challenging-15536013

Virology Blog. Trial By Error: HRA Report Does Not Vindicate PACE

http://www.virology.ws/2019/02/06/trial-by-error-hra-report-does-not-vindicate-pace/

White House Chronicle. The Deadly Hurt of Loneliness — It Kills

http://whchronicle.com/the-deadly-hurt-of-loneliness-it-kills/

Springer Link. Myalgic encephalomyelitis or chronic fatigue syndrome: how could the illness develop?

https://link.springer.com/article/10.1007/s11011-019-0388-6

 

Post Thirty Two. Some Things I’d Like My Visitors To Be Mindful Of.

This is a difficult post for me to publish. I find it hard to assert myself and let people know what I need, and that’s what I’m doing in this post. What I’m sharing here may be hard for non-ME people to understand, and if you’re someone who likes to visit me, it may be a bit of a nuisance to put into practice.

I have no reason to try and put off anyone from visiting me. I want people to visit me, the isolation I live in is a major factor in the decline of my mental health. But there are certain things that I need from my visitors, not because I’m trying to be awkward, but because it otherwise affects my health, sometimes severely. I worry that I may be thought of as being overly pernickety, and if it means I have even fewer visitors, then so be it. My priority is my health. I never feel well, but I want to feel as well as I possibly can, and nothing is more important to me than trying to keep my ME from becoming any more severe, that’s if I even have any control over it. I tend to think that maybe, if I can do all I can to try and minimise my day-to-day suffering, maybe it will affect the longevity and severity of my illness.

Socialising, interacting and communicating with people uses a tremendous amount of energy. This is something I had no concept of until I had ME, and I’m not sure that I can expect non-ME people to be able to identify with this at all. I can cope with visitors every now and then, but not often. Apart from my mum, on average I maybe have an additional visitor every three or four weeks or so, although it’s not unusual for me to go much longer without seeing anyone who isn’t my mum, or a doctor or my counsellor etc.  When I have a visitor, depending on how I feel on the day, I will start to flag and feel my symptoms worsening within an hour, usually after about fifteen minutes or so. But because I crave human company so badly, and I have so little of it, I do sometimes push myself and exceed my limit, knowing I will suffer for it.

It really takes it out of me when I socialise with one person, socialising with two people is even harder, and socialising with three or more people generally results in a bit of a disaster for me. It took me a while to understand what it is that causes my symptoms to worsen when/after I spend time interacting with one person, but I do now, and of course it stands to reason that it will be so much worse with more people. Just being in the presence of another person is harder on me/my energy levels than being alone, even if all we’re doing is sitting together in silence. ME has made me hypersensitive to stimuli outside of my body, including heat, noise, light, scent and movement. So obviously when there are more people, there will be more noise, more movement, etc. This results in a sensory overload for me. It’s additional stimuli for my already overtaxed body to take in. It’s like an assault on my senses.

There are no guarantees, ME does its own thing and I do not want to create the impression that people with ME can control the progression of their illness. It seems clear to me that there are different subsets within the ME diagnosis, and there does seem to be a progressive/degenerative version, which I suspect I have, given my gradual deterioration since the onset. ME is a neurological illness, and it cannot be cured or treated with lifestyle/behavioural changes. However, there are some things that I can do to manage my symptoms and attempt to mitigate the payback, but it’s not fool proof and it frequently doesn’t work (the payback, or crash, officially known as Post-Exertional Neuroimmune Exhaustion, is the worsening of my symptoms after I have overexerted myself).

So, when I have someone visit me, I will do the following – I will rest and do as little as possible the day before their visit and I will have nothing but rest planned for the following day. I will lie down and rest with my eyes closed, in a dark cool room, with my noise cancelling headphones on, immediately before (at least thirty minutes) and after (as long as it takes) their visit, never with the TV on, but sometimes with relaxing music or in silence. I will control the temperature and the light, as best I can. I will ask them to bring the coffee, so I am spared the effort/exertion of making it myself. I will make sure I have no other visitors or medical outings in the days before and after their visit. My visitors may think that for me, their visit begins when they arrive, and ends when they leave. Wrong. The preparation for, and the effects of a visit, goes far beyond that one day.

When I have someone visit me, I have to put so much thought into it, it pretty much has to be planned like a military operation. Every single thing I do has to be risk assessed. I always have to think about how one activity will affect another. My life takes far more careful planning now than it did pre-ME, and it’s what I have to do in order to manage my illness. I cannot just let life happen. My experience so far has taught me that I need structure and routine. I need to know as much as possible, what is going to happen and when. I need my week(s) ahead to be mapped out. Even pre-ME I found that having order in my life was soothing, but since having ME, it’s also become essential for my well-being. Not everyone will be able to identify with this. There are people who do not need or want to live like this, and that’s fine. It’s also fine that I do need and want to live like this. There is no right or wrong way. Take going on holiday for example. I like to get to the airport with as much time to spare as possible, I take the recommended arrival time seriously and if I’m running late I feel anxious and I don’t enjoy it. Whereas some people don’t mind arriving at the airport with little time to spare, rushing through security and arriving at the gate when the plane is already boarding. Neither of these approaches to life are right or wrong, one isn’t better than the other, they’re just different.

So, I’m finally getting to the point of this post. While I do what I can to feel as well as possible and reduce payback after I have someone visit me, there are also things that my visitors can do. I’ve never written about this before because I don’t like to put people out. I would rather be inconvenienced myself, than cause inconvenience for someone else. But now there’s more at stake, it’s not just inconvenience, it’s my health, my symptoms, it’s how my body feels, it’s the difference between a better or a worse day/week for me, and it’s potentially the longevity and severity of my illness. It seems ridiculous that I feel bad for asking what I’m about to ask. I fear that I’ll be seen as being unnecessarily difficult, or precious, and will alienate people as a result. I also worry that people might feel nervous about visiting me for fear of ‘doing something wrong’. But, these are things that would genuinely help me, and I’d like to think that the people who visit me like me and care about me enough that they will be happy to keep them in mind.

Here we go.

When I have a visitor, I need to know in advance what time they plan to arrive, and if it changes, I need to know as soon as possible.

When my visitor hasn’t committed to a time in advance and I’ve only been given a vague window of time for their arrival, the waiting and the anticipation of their arrival uses a great deal of energy, in the days running up to their visit, and on the day itself. More use of energy of course means more symptoms for me.

I have on a few occasions, after waiting for my visitor but not knowing when they’ll arrive, ended up feeling so unwell that by the time they get here, I’ve had to send them away. So we both miss out on seeing each other. It’s maybe an inconvenience for them, but they can at least get on with their day, I however will be paying for the additional (and unnecessary) use of my energy for the rest of the day, and possibly the next day, and the next… The only way I have found to prevent this from happening is to arrange a time as far in advance as possible, preferably at the point of the arrangement being made. It may mean that I see fewer people, and less often, as it’s not necessarily compatible with the lives of the people I know, but I cannot do spontaneity, vagueness or uncertainty.

Here are a couple of scenarios:

  1. A visitor tells me they will be in town on Friday or Saturday the following week, they’d like to visit me and they’ll let me know which day it’ll be on Thursday, and then confirm the time on the day.
  2. A visitor is coming by bus, the bus is due to arrive at 3.30pm and they’ll go to Costa on the way to mine, so they aren’t sure exactly what time they’ll arrive.

Scenario 1 is what I cannot do. On this occasion I will have to tell the visitor that this arrangement doesn’t work for me. If they’re unable to arrange the day and time now, then let’s wait until we find a date that they can.

Scenario 2 is fine. I’m not unreasonable. I know that no one can predict to the minute what time the bus will actually arrive, or how long the queue in Costa will be, or how many people ahead of them in the queue will order those iced blended drinks that take ages to make. In this scenario I can make an educated guess. I know what time their bus was scheduled to arrive, and I know roughly how long it can take when Costa is busy.

It’s probably not surprising to hear that I also cannot do spontaneous visits. I cannot cope with ‘pop-ins’, when people just turn up and knock on my door. I actually don’t answer my door if I’m not expecting anyone. I won’t use precious energy for a Jehovah’s Witness or a courier who’s at the wrong house. There are occasions when I’ve made an exception and accepted a visitor on short notice, like a friend who texts me to say they’re nearby and do I fancy a visit. Of course it very much depends on how I’m feeling at the time, and while it’s rare, it’s not completely out of the question for me to then invite them over for a short visit. So if in doubt, please do still ask, but don’t be surprised if I can’t manage it, and please don’t be offended. When it’s me who reaches out to someone with little notice to ask if they’re free that day/evening , it’s usually when I’m having to prioritise my mental health over my ME, and in the need of company.

While I was thinking about the the whole anticipation/waiting thing, and not quite understanding it, I reached out to one of the ME support groups I’m in and I asked if anyone else experiences this. Of the thirty four replies I got, every single one of them told me that they experience this too. ME is one odd illness.

I need my visitors to be on time, not too early and not too late.

I have to rest immediately before I have a visitor, and if the visitor arrives earlier than planned, my rest will be interrupted and as a result I will manage less time with my visitor and the crash will be more severe. If they are late, well this is similar to the above scenario, the waiting and anticipation will use so much more energy, which will exacerbate my symptoms and I may end up feeling so unwell by the time they arrive that I’ll have to send them away, and I don’t like doing that.

I’m not going to be completely militant about this, it’s not a case of needing my visitor to arrive at 16:00 on the dot or else they’ll be sent away. I appreciate that interruptions do happen. It’s not unheard of to be stuck behind a tractor when driving or on the bus to Peebles. Being in the countryside means cows can escape their field and wander around on the road very slowly and without any urgency to go back to their field. Their phone could ring as they’re leaving the house to come and visit me and they get held up. I know this. I’m really just asking that if anything does happen that could make my visitor late, I’d like them to let me know as soon as they realise, so I can then make an informed decision about whether it would be best to cancel/postpone the visit or not, and I’m not left wondering.

I need my visitors to move carefully and slowly, with no sudden movements.

I’ve mentioned before that I’m hypersensitive to movement, not all the time though, it varies. This sensitivity to movement is why, if a visitor offers to wash my dishes, I might turn down their offer. It’s not out of pride, or not wanting to inconvenience them, it’s because in that moment, I cannot cope with the movement (or noise – see below) within my vicinity.

This also affects my use of the internet. If it’s a worse day, I cannot bear when I’m scrolling down Facebook, or whatever, and a video automatically starts playing. Both the movement, flashing images and/or the noise will trigger vertigo-like symptoms. I recently wanted to watch something on BBC iPlayer, but it had a woman using sign language in the corner of the screen, with no option to watch without it. While it’s very much a good thing that this is available, I couldn’t cope with the movement in the corner of the screen as I tried to concentrate on what I was watching. I thought it was interesting though, that by making something more accessible for one set of people, it can make it inaccessible for others.

Now of course I don’t expect people to stay perfectly still, they don’t have to be statues. I would just like my visitors to be mindful of this and be aware of the effects of wild hand gestures and sudden unexpected movements on my already struggling brain. If it’s the result of a huge sneeze, or anything they have no control over, then of course that’s ok.

I need my visitors to speak at a low volume and not too fast, and to remove their shoes and coats downstairs and leave any noisy plastic bags downstairs.

I am hypersensitive to noise. I have always been sensitive to noise, even pre-ME, my hearing is annoyingly good and unwanted noise (from neighbours for example) makes me very anxious and puts me on edge, it still does, but since having ME, noise actually causes me pain. This is why I wear my noise cancelling headphones all day, apart from when I’m sleeping, when I use ear plugs.

This is one of the trickier ones for me to navigate, because noise is everywhere. My brain cannot cope with noise coming from more than once source at a time. When I’m alone, my headphones help with this, as I can listen to music or watch TV through them, while blocking out (most of) the other sounds around me. But I have to take my headphones off when I have visitors, so I can hear them properly, but it also means I can hear all the other noises – my fridge humming, the radiator, people on the close outside my house, traffic in the distance, birds singing, dogs barking, etc. It’s really difficult to explain how a noise/sesnory overload like this makes me feel, but it’s excruciating. I can feel my body and my mind deteriorating, it’s like – Harry Potter spoiler ahead – you know how when Voldemort dies in the film and he kind of disintegrates, I feel like that is what’s happening inside my body and my mind. It affects my ability to absorb and understand what the other person is saying to me, almost as though they’re speaking in a foreign language that I don’t understand, but they use English for every fourth word. I struggle to process their words and apply any meaning to them. I lose my ability to think and formulate a response. This is basically what brain fog is. Eventually it will also cause me to get a headache, I’ll feel faint (in that room spinning way when drunk), then my muscles and my limbs (especially my upper arms) will begin to ache, and quite randomly my shoulders will begin to ache too.

This is how my visitors can help me with this. If my visitor has a noisy coat (like a raincoat that rustles), I’d like them to remove it downstairs by the front door or in my bedroom, before coming upstairs to the living room. If they have brought us a Costa coffee and a snack for themselves, I’d like them to remove their snack from the paper bag or plastic wrapping, and use a plate, rather than eat it directly out of the bag/wrapper, which will rustle noisily with every movement (these rustley noises are the most painful for me). If they want to show me a video of something online, I’d like them to send me a link, so I can watch it in own time, with my headphones on, rather than play it then and there. I would like visitors to speak as softly as possible and to not speak too quickly, and to please not be offended if I ask them to speak at a lower volume or to slow down.

Again, I don’t expect visitors to be mute. I would just hope they could be mindful of this, and how it affects me, especially when there are more than two of us there.

When I have more than once visitor at a time, I need them to speak one at a time.

This is pretty much covered above. It’s difficult and draining enough for me to concentrate on what one person is saying, it’s so much more difficult when there’s a group of people, and more than one person talking at the same time. When this happens, as well as the symptoms described above, I simply zone out of the conversation altogether, and I may as well not be there.

Because it is a lot harder for me to socialise in groups, I don’t do it often, but sometimes it’s unavoidable, and sometimes I just want to, because it’s fun, and I still want to do fun things, but fun things of course use energy too.

I need my visitors to avoid using their phones in front of me.

As you’ll have gathered by now, I need to keep any stimuli in my vicinity to a minimum. This includes electronic gadgets, mine too. I try to remember to turn my phone over when I have company so I won’t be distracted at the arrival of a reminder or a text message. This goes for my visitors phones too. Any noise, light or moving images that suddenly appear is more for my brain to take in, which uses more energy, and therefore I fade faster. I also find that it divides my concentration, which makes it harder for me to absorb and process information. I find it harder to keep my concentration on the person, when their concentration is on their phone. I’d rather be able to focus my attention entirely on them, when my attention is split, the brain fog and dizziness set in sooner.

I need my visitors to be scent/fragrance free.

This is a newer one for me, and it’s extremely difficult to put into practice. I am now unfortunately very sensitive to scents/fragrances. It’s incredibly annoying for me and for my visitors.

The person I see the most of is my mum. She has had to replace all her soap with fragrance free versions and she can no longer wear perfume. She can’t even wear it when she’s not with me, as it will transfer onto her clothes, and if she re-wears something, forgetting that it’s been in contact with perfume, I will then suffer for it. It makes me feel lightheaded and causes pain between my eyes, my head and the back of my throat in a ‘if this gets worse I’m going to struggle to breath’ kind of way.

I have also replaced my soaps and my washing up liquid with fragrance free varieties. I’m still looking for household cleaning products, I’m sorted with the laundry though as I already use an Ecoegg. I’m keeping hold of my perfumes in the hope I will be able to use them again one day.

This is a really hard one, because it feels completely unreasonable for me to ask people to ensure they are fragrance free when they visit me. I don’t feel I can ask people to change their shampoo, conditioner, soap, laundry detergent etc. I think all I can ask is that my visitors try to keep it to keep it to a minimum, like, not wear perfume if they are seeing me that day, and not wash their hair the morning they are visiting me, etc. They should also be prepared that if they are scenty, I will have to open the window, however cold it is, and I might also have to ask them to leave, if/when it becomes too much for me.

I can’t have visitors who are feeling unwell themselves and are potentially contagious.

ME, as well as involving dysregulation of the central nervous system, also involves dysregulation of the immune system. This means that my immune system is compromised, and I am therefore more susceptible to catching colds, flus, infections etc.

So far I’ve been pretty lucky, I haven’t had that many illnesses on top of my ME, unless I have but I haven’t noticed, which is actually fairly likely. I could have a worse few days or weeks, and not realise it’s because I have the flu or a cold. This happened in 2016, and it turned out I had Tonsillitis, but I hadn’t realised, and I ended up needing my tonsils removed. However, even though I have been fairly lucky up until now, that doesn’t mean I am prepared to take risks.

When I catch a bug it will take me longer to recover, it can cause complications involving my ME, it could also trigger a relapse and it has the potential to push my already severe ME into very severe ME. It is therefore very important that my visitors are feeling well themselves. I cannot have someone visit me if they have some kind of bug, or even if they have that feeling that a cold, or whatever, is on the way.

It’s also important that my visitors practice good personal hygiene, especially if they’ve travelled by public transport or have been handling money, or anything that’s particularly germy. I’m not going to police this, I think I can trust my visitors to know when washing their hands will be necessary, and my bathroom is handily right by my front door, for those who want to wash their hands upon arrival. Also, and this is basic common sense and good manners, I would hope that any visitor I have will always cover their mouth when they sneeze, cough or yawn.

If you’re wondering, I am eligible for the free flu vaccination (the flu vaccine is offered free on the NHS to people in certain at-risk groups, mainly people who are at greater risk of developing serious complications if they catch flu) but I have decided against it. I am by no means an anti-vaxxer, I don’t get the flu vaccine because it’s quite common for people with ME to suffer a relapse after having the vaccination. According to the ME Association… “This could be because research into immune system dysfunction in ME/CFS has found evidence of what is called immune system activation – which equates to a persisting and overactive immune response to a triggering infection. Vaccines are designed to mimic the infection they are supposed to protect against and so they also trigger an immune system response.”. It has been advised that an adverse reaction to the flu vaccine is more likely to occur in people with ME who have on going flu-like/infection symptoms, such as swollen glands, sore throats and problems with temperature control etc, which I do, these are perfectly normal everyday symptoms for me. So I personally have chosen not to be vaccinated.

Shoes off please.

This doesn’t directly affect my symptoms, but it seems a good time to mention it. I prefer people to remove their shoes by the front door before coming upstairs to my living room, or my bedroom etc. This is because, any dirt that gets trailed in, after their visit, I won’t be able to clean it up. Vacuuming is out of the question for me as it uses so much energy, I don’t have the strength to hold the vacuum cleaner and I can’t stand for long enough. But if anyone has a genuine need to keep their shoes on, they won’t be banished, I’ll just ask them to give their feet an extra good scrub on the doormat.

The Science!

Since I’ve been writing this post I’ve been doing some research to try and find some articles to share that may help explain these particular symptoms. I found two, one is about the dysfunctional autonomic nervous system in people with ME, and the other one is about a neurological process called sensory gating, which I had never heard of before. I have shared some excerpts from each article below, to read them in full, just click on the title of the article.

This document created by The ME Association explains why stimuli outside the body, such as noise, heat or emotional stress, causes the reaction that it does.

The Dysfunctional Autonomic Nervous System in ME/CFS – The ME Association

Altered autonomic nervous system (ANS) functioning has been frequently reported in patients with ME.

The nervous system spans the whole body, connecting all our organs and tissues with each other and the brain, sending messages between them. It is split into two systems: The central nervous system and the peripheral nervous system. The autonomic nervous system (ANS) is the involuntary branch of the peripheral nervous system. Involuntary means that it controls most of our unconscious actions, that, most of the time, we aren’t aware are happening; such as breathing, digestion and the beating of our heart, so it’s like an auto-pilot system.

The ANS has influence over muscles and glands throughout the body and controls a whole range of things, including heart rate, breathing, salivation, digestion, perspiration (sweating) and urination. The ANS is further subdivided into two opposing sections; the sympathetic and the parasympathetic nervous systems. These two divisions have a sort of yin-yang relationship; they both act on the same parts of the body but produce completely opposite effects.

The sympathetic nervous system (SNS) likes to speed everything up (get you ‘hyped’) and is best known for stimulating the ‘flight or fight’ response, having effects such as increased heart rate, increased breathing, dilated pupils, slowed digestion, and increasing blood-flow to the muscles in preparation for movement. On the other hand, the parasympathetic nervous system (PNS) likes to calm you down (relax you)
and is known for the ‘rest and digest’ response, having opposite effects to the SNS, such as slowing your breathing, reducing your heart rate, constricting pupils, and encouraging digestion.

When in balance, these two systems work together well in the body. However, they are selfish systems as when one is working, the other one cannot; one must be  switched off’ in order for the other to work – they cannot both work at the same time. Understandably, the sympathetic nervous system is very energy demanding, whilst the parasympathetic nervous system, is energy conserving.

ME/CFS patients tend to have reduced parasympathetic activity, and increased sympathetic activity, known as “sympathetic nervous system predominance”. This same ANS dysfunction is seen in healthy people after engaging in acutely fatiguing tasks, and the lack of parasympathetic activity appears to correlate to feelings of fatigue. The difference is that in CFS, the ANS dysfunction happens after much lower levels of stress or activity.

In simple terms, people with ME/CFS are hyper-sensitive to anything from infections and pain within the body to stimuli outside the body, such as noise, heat or emotional stress. The body is stuck in a high-alert – ‘we need to defend ourselves from all threats’ – mode (otherwise known as the ‘fight or flight response’, stemming from the sympathetic nervous system).

Naturally, being on a constant state of high alert, quickly drains the body of energy and can result in other problems, such as gastrological symptoms, as digestion is not a priority in this state. The sympathetic system puts many organs and processes into overdrive and deprives other areas of blood and oxygen, so this is not an ideal state to spend most of your time in!

This is a guest post from the Health Rising website in which the author sets out a hypothesis for a single neuroinflammatory process as the core pathophysiology underpinning ME.

‘Sensory Gating’ – A Key to Chronic Fatigue Syndrome (ME/CFS)? – Health Rising

First a short questionnaire….. Would you agree or disagree with below statements?

  • My hearing is so sensitive that ordinary sounds become uncomfortable
  • There have been times when it seems that sounds and sights are coming in too fast
  • It’s not bad when just one person is speaking but if others join in, then I can’t pick it up at all. I just can’t get into tune with that conversation
  • There are days when indoor lights seem so bright that they bother my eyes.
  • I have more trouble concentrating than others seem to have
  • I seem to hear the smallest details of sound
  • When I’m tired sounds seem amplified

These statements are taken from a questionnaire developed to assess problems with something called ‘sensory gating’. If you answered yes to several of these or other similar questions you could have problems with sensory gating.

“Sensory gating describes neurological processes of filtering out redundant or unnecessary stimuli in the brain from all possible environmental stimuli. Also referred to as filtering, or sensorimotor gating, sensory gating prevents an overload of irrelevant information in the higher cortical centres of the brain” Wikipedia

Three common phenomena that may be disturbed if there is a problem with sensory gating are ‘the Cocktail Party Syndrome’, the ‘Seat of the Pants’ phenomenon and the ‘Startle Reflex.’

In the ‘cocktail party syndrome’ it’s difficult to carry on a conversation with in a room because we have difficulty filtering out the noise of others. In the ‘seat of the pants’ phenomenon we have difficulty attending to the outside world because nerve impulses signalling the body is in contact with a surface don’t get filtered out as they should.

If we hear a loud bang we jump but if the noise is repeated several times and nothing untoward happens then eventually we learn to ignore it through a process of habituation and it becomes just so much more background noise. However, if our brains keep attending to the jackhammer or the door shutting or banging or whatever, again we don’t have much room left to attend to what’s in from of us.

It’s easy to imagine the ‘information overload’ if all these signals and others, reached the conscious mind on an on-going basis.

An important point to note though is that these mechanisms operate at the pre-conscious level. For example a sudden loud noise will elicit a startle response regardless of whether or not we had previously identified the noise as dangerous or harmless. It also appears that the strength of the startle response varies between individuals.

It may be hypothesised that ME/CFS patients, if tested, would show a deficit in neurological sensory gating and that this gating deficit may give an insight into many of our common and not so common symptoms.

So, if I’m right, when I am overstimulated due to my hypersensitivity, my body gets stuck in this state of ‘high alert’ or ‘fight or flight’. Being in this state drains my body of energy and puts my organs and processes into overdrive while depriving other areas of blood and oxygen. I feel worse as a result. It doesn’t explain why I feel worse when I’m waiting for someone, but it’s maybe something to do with the feeling of anticipation, which could maybe create this state of high alert. But I’m no scientist, I could be wrong.

Almost Finished

I hope that what I have shared in this post will prove helpful for those who visit me. It’s basically just me asking my visitors to be mindful of the things I need to remain as well as possible. Of course ‘well’ is a relative term here, I’m never well, but you know what I mean.

I’m so grateful for the people who do visit me. I enjoy their visits, I’m unable to go to them, so when they come to me, they provide me with little pockets of real life. When I’m with non-ME people I like to hear about their lives. I know some people with ME find it really difficult to hear about what their healthy friends and family are doing, and I get it, I feel that too, but more often than not, I find these visits make me feel more connected to the outside world.

I also want to it to be known that it’s not always easy being a friend or family member to someone with severe ME. It’s especially hard on the immediate carer(s), but it’s also hard on everyone else in their life. My hope is that, by explaining why I have to do things a certain way, it will help my visitors to understand that if I ever have to cancel a visit, or turn down an offer of a visit that was made on short notice, or cut a visit short, it’s never personal. ME dictates everything I do, there’s no ‘fighting’ this illness. My best hope of feeling better is to give in to my illness. This doesn’t mean giving up, it means listening to my body. It means resting when my body needs to rest, to have silence when my body needs silence, etc etc. I hope that by aiding my visitors in their understanding, when I do have to cancel a visit, or whatever, they will be able to deal with it graciously, because they’ll know that I’m not saying “I don’t want to see you”. I’m simply doing what my body needs me to do, to allow it to feel as well as possible and hopefully one day regain some function and improve my quality of life.

 

NEWS

Springer. Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy

https://link.springer.com/article/10.1007/s11682-018-0029-4

Stat News. The NIH is thwarting research on a poorly understood yet serious condition

https://www.statnews.com/2019/01/10/nih-obstacles-thwart-myalgic-encephalomyelitis-research/

Sage Journals. Changes in the transcriptome of circulating immune cells of a New Zealand cohort with myalgic encephalomyelitis/chronic fatigue syndrome

https://journals.sagepub.com/doi/abs/10.1177/2058738418820402

Health Rising. Decoding the 2-day Cardiopulmonary Exercise Test (CPET) in Chronic Fatigue Syndrome (ME/CFS)

https://www.healthrising.org/blog/2019/01/17/decoding-2-day-cpet-chronic-fatigue-syndrome/

Health Rising. Not Fatigue After All? New Model Suggests Other Symptoms Better Explain Chronic Fatigue Syndrome (ME/CFS)

https://www.healthrising.org/blog/2013/01/17/not-fatigue-after-all-new-model-suggests-other-symptoms-explain-chronic-fatigue-syndrome-mecfs-better/

Simmaron Research. Could the Gut Cure Neuroinflammation? An MS and ME/CFS/FM Inquiry

http://simmaronresearch.com/2019/01/gut-cure-neuroinflammation-m-s-mecfs-inquiry/

The ME Association. US study of onset patterns and course of illness in ME/CFS 

https://www.meassociation.org.uk/2019/01/mea-summary-review-us-study-of-onset-patterns-and-course-of-illness-in-me-cfs-29-january-2019/?fbclid=IwAR0d0-az2FwWdoRm31B19IuNcXhss6-i24oDz6nGBhndMONCzLMVu6wmOKc

Health Rising. The Hummingbird: Could a Blood Flow Enhancer Help With Fibromyalgia, POTS and ME/CFS?

https://www.healthrising.org/blog/2019/01/29/hummingbird-fibromyalgia-pots-chronic-fatigue-syndrome/

Health Rising. Hypocapnia Cerebral Hypoperfusion: New Kind of Orthostatic Intolerance Points to Key Factor in ME/CFS and Others

https://www.healthrising.org/blog/2019/02/01/hypocapnic-cerebral-hypoperfusion-orthostatic-intolerance-chronic-fatigue-syndrome/

Post Twenty Five. General Update – The Last Three Months.

I haven’t posted for a while and I couldn’t decide which of my partially written posts I should complete first, so I decided to start with a general update, to let you know what’s been going on in my life the past few months. One of the benefits of my blog, I’ve discovered, is it saves me energy when I communicate with friends, we don’t have to begin the ‘what have you been up to’ conversation from scratch, if they’ve read my blog. So if I write regular general updates, this will update everyone (who’s interested) in one go, and save me from having to have the same conversation over and over again.

The reason that I haven’t posted anything since February is that I’ve had a really bad few months. My trip to Iceland (see Post Twenty Three. Wheelchair’s First Holiday.) and my screening of Unrest (see Post Twenty Four. Unrest In Peebles.) caused me to relapse. Four months later and I’m still not back to my pre-Iceland levels of ME. I’m managing much less, and I already couldn’t do much, and it takes far less exertion to cause me to crash these days. So I haven’t managed to write much on here, not on top of feeding myself, cleaning myself, getting to counselling and the doctor, which have had to be my priorities.

Mental Health

I also had a huge dip in my depression and anxiety a couple of months ago. I was experiencing frequent panic attacks, I had a constant sense of fear, my mood was incredibly low, and it was having a huge impact on my ME symptoms. I’ve been on and off anti-depressants since 2016, trying to find something that I don’t react badly to (I’m extremely sensitive to medications since having ME). In September last year I started a new one, Bupropion. My GP and I decided I would stay on the lowest dose for a few months before increasing, to give my body time to get used to it. It was during this especially difficult period a couple of months ago that we decided, in the hope it would help me through it, to increase the Bupropion dosage. Unfortunately though, in order to increase the Bupropion, I had to stop taking Amitriptyline, also technically an anti-depressant, but I take it at a low dose as a migraine preventative. The two interact when either are taken at a higher dosage, but due to the severity of my depression at this time, I decided I had to try.

So I phased out the Amitriptyline, and then increased the Bupropion. I knew I would experience the side effects of increasing the Bupropion, I did when I first started it, and the first two weeks both times were absolute hell. As the side effects of the increased Bupropion dosage wore off, I began to realise just how much the Amitriptyline had been doing for me. I already knew how effective it was at reducing the frequency of my migraines, from two or three per week, to two per month. I hoped it wouldn’t happen, but when I stopped, the almost daily migraines returned. It always takes me a few days to recover from a migraine, and when they occur this close together, I basically never have a day off, so I spent a few weeks feeling constantly migrainey. I also stopped sleeping, I did suspect that Amitriptyline helped me sleep, but I guess I’d forgotten, it turns out, in combination with another couple of supplements, it’s essential for me.

One of the benefits I hadn’t known about was how it appeared to help me during my period. Since having ME, I developed Endometriosis (a common occurrence for women with ME), and my period went from being pretty average, to being the most dreaded, painful and generally worst week of the month. Each period caused my ME to relapse, all my ME symptoms worsened considerably. My period itself also became heavier, far far more painful with utterly debilitating cramps (ten out of ten on the pain scale), it made me nauseous and dizzy, and my bladder and guts would join the party too, it was horrendous all round, and I was looking at a possible hysterectomy. But then, thanks to a combination of meds and supplements, it became far more manageable, nowhere near my pre-ME periods, but a lot better. So I was not prepared for my first period after stopping Amitryptyline to be the worst one of my life so far. As well as the worsening of my ME symptoms, migraines, nausea etc, I had cramps so bad that they caused me to double over in agony while walking down the stairs, and resulted in me falling down the stairs, thankfully I wasn’t hurt as I was near the bottom anyway. I decided immediately that I wanted the Amitriptyline back.

So I’m now back on my usual dose of Amitryptyline, 25mg does it for me. Which of course meant I had to either drop back to the lower Bupropion dose, or stop it altogether. I decided to stop altogether, it wasn’t doing anything for me at the lower dose, so there was no point staying on it. I’ve now been back at my normal Amitriptyline dose for two weeks, and have only had one almost-migraine since, the longest I went with no migraine during those horrible few weeks was three days. After much discussion, my GP and I have come to the conclusion that due to my sensitivity to meds, I’m done with anti-depressants, the side effects are too severe, and they mess with my other meds, and none that I have tried so far have worked. So that’s that. I have Diazepam for when my anxiety gets really severe, but when it comes to depression I’m going to have to deal with it unmedicated, which terrifies me, because I fear that it could kill me. But there’s nothing more I can do, other than continue with counselling, keep trying to find things to look forward to, and keep fighting for ME health equality.

An Upsetting Discovery

I wrote in a previous post (Post Eleven. From Healthy To Not Healthy.) about a doctor I saw at the Western General Hospital in Edinburgh in 2015…

I saw the ME/Infectious Diseases doctor at the Western General in mid-May. I suppose, being honest, he didn’t really have much in the way of new or useful information for me, but, he listened to me. He gave me an hour and a half to talk. I don’t think I can put into words how good it felt to finally have a medical professional with a knowledge of ME actually listen to me, and believe me, to show me understanding and compassion. We went through my entire medical, and life history. We also bonded over a love of Icelandic music! He too confirmed my diagnosis of ME. All he could have suggested was that I attend the Astley Ainslie ME Service, which I had already been referred to so there was really nothing more he could do. But he helped me enormously, like I said, he was the first example of a doctor who truly believed me and who acknowledged what a devastating and life-changing illness ME is. I really don’t think anyone can understand the importance of this, not until you’ve been there yourself.

In February I discovered something really shocking and upsetting. You’ll have to have some understanding of the PACE Trial in order to understand this, (see my previous post Post Seventeen. The PACE Trial Scandal.). I found out that the doctor I saw, the doctor who I praised, was a co-author of the PACE Trial, he ran the Scottish leg of the Trial. Despite all the evidence to the contrary, this doctor strongly believes that ME is a psychosomatic illness. He believes that we, people with ME, simply ‘believe’ that we have a physiological illness. From speaking to other patients of his, it seems he does take us seriously, and he does want to alleviate unnecessary suffering, he believes ME is a real illness, he believes that we suffer, but he does not believe that ME is a neuro-immune illness, he believes it’s a psychiatric condition. He believes that we have ‘false illness beliefs’, that we simply have a fear of exercise, and that we can overcome these beliefs with Cognitive Behavioural Therapy (CBT), then we can undergo Graded Exercise Therapy (GET), and recover.

I was shocked when I heard, but all I had to do was Google his name to find proof, I also found some deeply troubling papers that he had written about ME. This man is partially responsible for the NHS treating ME as a psychosomatic disorder, despite the fact that ME is defined as Neurological by the World Health Organisation. How he, and his colleagues can do this, in the face of current research that proves that people with ME have specific defects at a cellular level (plus other science stuff I don’t understand), I just don’t know. I don’t know what his agenda is.

When I met him, I had no idea that from his point of view, I was a psychiatric patient. I felt like he believed me, that’s why I heaped so much praise on him, but seemingly, he only believed, that I believed, that I had a ‘real/physical illness’. So when we spoke, was he simply playing along, indulging my so called fantasy? I feel manipulated. I can only assume that he never brought up his psychosomatic model of ME during our appointment because he knew I had already been referred to Astley Aisnlie Hospital, and assumed they would use CBT and GET to treat me – they did not. They did use CBT, but as a tool to help me cope with my life-changing diagnosis, and I stated at my first appointment that I would not take part in GET, and they were fine with that.

I found this out in February, and I’m still reeling from it. He was nice to me, he treated me kindly, he was charming. But there’s no hiding from the truth now, his professional stance is completely behind the psychological model that states ME is not a physical illness, and that our symptoms could be removed if we wanted it enough. From now on I will research every doctor I see, so I won’t make the same mistake again.

Snow Days

We had some wonderfully snowy weather at the beginning of March. While other people had to deal with closed schools and blocked roads, I just stayed cosy in my cottage and admired the view out the window and wished I was well enough to go out and play in it. Something funny though, I had a few people ask me if I was ok, if I was managing ok being stuck inside due to the snow. This was really kind, it’s nice to be remembered, but, for me, the snow made no difference, at all. I’m always stuck indoors. I have been since mid-2015, when my ME worsened and made me mainly housebound. I was no more stuck inside with the snow, than I am when there’s no snow. But I rarely get asked how I cope with being stuck indoors when it’s ‘just’ due to my illness. Interesting.

Acupuncture

I have wanted to to try acupuncture for a while. I’m not normally one for alternative therapies, but I felt that the anecdotal evidence for acupuncture in the treatment of migraines was strong enough to give it a shot.

Initially I had hoped I could get this treatment on the NHS. It’s not something I would have normally considered (getting on the NHS), except I had read the Scottish Good Practice Statement on ME. These are the guidelines that NHS Scotland use for the treatment of ME, and they actively recommend acupuncture as a treatment for migraines in people with ME. So I asked my GP, and she contacted NHS Borders to ask if this is something they would fund. They would not, unless I attended the pain management programme at the BGH (Borders General Hospital) Pain Clinic.

I actually met with one of the Pain Clinic doctors early-2017 and he told me that the only thing he could offer me was this ten week, weekly, pain management programme. I would have to attend an exercise based workshop once a week at the BGH. He was actually fairly well informed about ME, and he advised that this course would be unsuitable for me, due to the exercise based approach, and the fact that I’d have to make the journey to the BGH every week for ten weeks, which is just not do-able for me. He also told me that acupuncture was not available on the NHS, this was before I had read the Scottish Good Practice Statement, and I believed him.

So, NHS Borders have denied me funding for an officially recommended treatment, that could help me, unless I attend a course that would cause me harm, a course that I was advised not to do by the actual doctor who runs it. Bonkers, I know.

After finding funding for it elsewhere, I then began my search for a private acupuncturist who could do home visits. I found someone from Borders Chiropractic and he comes to my home every Monday. It’s too soon, and there have been too many variables (on and off Amitriptyline, Bupropion etc) the last couple of months, to say if it’s having an effect. I do find the actual appointment very relaxing, and twice so far I have spent the rest of the day (after the appointment) feeling better than I have for ages. I want to give it at least six months before I make my evaluation.

Blue Badge

In the last couple of months I successfully applied for a Blue Badge, which means I (my mum, me as the passenger) can now use designated disabled parking spaces. I hardly go anywhere, so it won’t get used much, but it’s really useful for hospital appointments. The BGH is huge (as are most hospitals), and every appointment involves too much walking, so now I don’t go without my wheelchair. Having the extra space around the car for folding and unfolding my wheelchair is great, I can faff around without worrying about being hit by a car, that’s always a good thing. Of course being able to park close to the hospital also helps with my overall energy usage. The process of getting the Blue Badge was unpleasant, but it was through my local council, so it wasn’t as bad as dealing with the DWP. Stuff like this is always disheartening though, when I have to defend my need for support as a chronically ill/disabled person, I feel as though I have been reduced to a list of symptoms on a form and how they affect me, it’s never a pleasant experience.

New Neurologist

I had a really positive appointment with a new neurologist. He was surprisingly, although I still say this cautiously, helpful. He seemed sensitive in regards to ME, no eye rolling, no disparaging remarks, no (obvious) disbelief. He acknowledged that a lot of my symptoms are neurological, and are indicative of both ME and/or MS. Next step, an MRI of my brain and spinal cord. I’m pleased that he wants an MRI of my spinal cord. Since I read about a small study regarding the improvement of severe ME symptoms following surgical treatment of cervical spinal stenosis, I’ve been wondering if this could be an issue for me, the MRI will let me know. It will also be really interesting to find out if I do have inflammation of my brain and spinal cord, which would be the ‘Encephalomyelitis’ of Myalgic Encephalomyelitis. Although some do disagree about the appropriateness of this name for the illness. The ME Association, for example, prefer Myalgic Encephalopathy, with ‘Encephalopathy’ meaning damage or malfunction of the brain, as opposed to inflammation. Whatever he finds, it’s good to have a proactive Neurologist, who plans to follow up and see me again whatever the outcome of the MRI, he wants to help alleviate my suffering, whatever the cause.

Bladder/Uterus/Period Stuff

*If this stuff grosses you out (but why?!) then maybe skip this bit. This is also your warning that I may be stepping into ‘too much information’ territory, so if you don’t want ‘too much information’, don’t read it!

My bladder symptoms returned with a vengeance in February so I’ve been referred to a new Urologist. I’d put this off as the symptoms had lessened, and Urologists aren’t much fun, they like to do invasive bladder procedures, obviously. This may be way too much information, but, why not (I used to be so private, but now I couldn’t care less). Back when my period was really bad, I bought a menstrual cup in the hope it would handle the heaviness of my period, I also liked the idea for environmental reasons, much better to buy one product that I can use every month for ten years, than multiple products per period that end up in landfill. I found out unfortunately, that for some reason, my bladder does not like having a menstrual cup next door to it. Each time I tried it, my bladder symptoms were exacerbated. So I gave up, until a few months ago. I dug out the menstrual cup, sterilised it, and tried again, and that’s what triggered the return of my bladder symptoms. So, I wonder what the Urologist will make of that. I think my pelvic floor muscle is knackered, it’s the only thing that I can think of that, literally, connects all this stuff. I’ve also developed some other new issues surrounding my period. Not only can I not use a menstrual cup, I now experience pain when using tampons, but my period is far too heavy to not use tampons, pads alone are just useless for me.

I’m wondering if my Endometriosis is back. It was almost two years ago when I had surgery and the Endometriosis was cauterised, but it can grow back, the only way to know though, is with more surgery. If my ME wasn’t such a massive and annoying complication I would ideally like a Hysterectomy. I’ve been asking for one since I was sixteen, I have no need for a uterus as I have known since I was a teenager that I didn’t want to have children. But, given how my ME has reacted to hormonal birth control (permanent relapses both times), there is a risk that a Hysterectomy, and the compulsory Hormone Replacement Therapy, could cause another severe and permanent relapse. There’s just no way of knowing what would happen, and a Hysterectomy is of course irreversible, so it would be a huge gamble. I’m also considering Endometrial Ablation, it sounds a bit scary, permanently disfiguring my uterus, but it could be a good compromise. It would make my period lighter and shorter, or even better, it could eliminate it altogether.

Given these particular sets of symptoms seem to be intertwined somewhat, what I really need is to see a Urologist and a Gynaecologist in the same room at the same time, but for some reason that’s just not possible. Apparently modern medicine believes that human bodies are made up of separate parts that never interact.

Fundraising For ME Research

I’ve had some family and a friend do some fundraising for ME research again this year!

My brother-in-law John is running to raise money for Invest In ME Research! He ran the Stirling marathon on 29th April and will run two half marathons in Edinburgh and Alloa on 27th May and 3rd June. His goal is to raise £2500 and at £1932.40 he doesn’t have far to go! You can make a donation here.

https://www.justgiving.com/fundraising/john-mcglynn3

My friend Paul walked the Northumberland Coastal Challenge  (26.2 miles) on 7th May to raise money for ME Research UK! His goal was £250 which he exceeded by raising £330! You can still make a donation here.

https://www.justgiving.com/fundraising/PaulwalkforME

In March my niece Amelia (with help from her mummy/my sister Emma), hosted an afternoon tea on the Mother’s Day weekend to raise money for Invest In ME Research and her gym, Astro Gymnastics. She raised £403.34 in total, so £201.67 for each charity!

My mum, for the second time, donated her birthday, which happens to fall on International ME Awareness Day, to Invest In ME Research! She threw a huge party and asked for donations only, no gifts or cards. She’s still to receive some donations but it looks like she’ll have raised around £1000!

Many thanks to John, Paul, Amelia, Emma, my mum and everyone who donated. Every penny that goes to Invest In ME Research and ME Research UK goes directly into biomedical research, which is the only hope we have to find a cure.

#MEAction 

I’m very happy to announce that I am now officially part of the #MEAction Scotland team!

The MEAction Network, co-founded by Unrest Director Jennifer Brea, is a worldwide ME patient advocacy group fighting for health equality for ME. The focus is on empowering patients to take action to improve the research and treatment situation, through local affiliate groups in countries around the world.

My involvement is with our public Facebook page, currently called Millions Missing Scotland, but we hope to soon change the name to #MEAction Scotland. The purpose of this page is to communicate about ME events, activities and news to our followers, and to provide a platform for sharing information about things happening in Scotland. I’m an administrator for the page and will be/have been posting ME related articles, research and news to the page. Basically, the ME news that I’ve been sharing publicly on my own Facebook page, I will now be sharing on the Millions Missing Scotland (soon to be #MEAction Scotland) Facebook page. I urge anyone who likes to read what I post on my own page, in regards to ME news, please do like and follow our page. We want this page to be Scotland’s hub of ME related news. Everything relevant to our illness; fundraising, petitions, research, etc, will all be shared here.

We also have a closed Facebook group called #MEAction Scotland. The group is a community, to get ME advocates in the same place to share ideas and get people involved in ME advocacy. You need to join the group (by request) to be able to post and read other people’s posts. It’s a great place to share ideas and brainstorm about fundraising events, or anything related to ME advocacy. You don’t have to have ME to join the group, our healthy allies are just as important in our advocacy efforts.

ME Awareness Month and #MillionsMissing

May is International ME Awareness Month, with ME Awareness Day falling on May 12th, which was Florence’s Nightingale’s birthday, who reportedly suffered from ME herself.

We have had a lot of press coverage this month. In particular, in response to the new BBC Newsbeat documentary M.E. and Me (available on BBC iPlayer and YouTube) and also in anticipation of the 100+ #MillionsMissing protests that took place globally on Saturday 12th May.

Press coverage is good, but I’ve actually been really disappointed in a lot of the articles I’ve seen. So many start off well, but the reporter then rounds the story off with incorrect details that they’ve clearly found online, such as ‘the recommended treatments are CBT and GET’, with no word that these are actually dangerous and are not based on evidence. I’ve only seen one article (The Canary – see link below in the News section) correctly identify the main symptom of ME. They almost all say that the main symptom of ME is being extremely tired, or something along those lines, but never the actual main symptom – the abnormal response to exertion. Or they use ‘Chronic Fatigue’ in the headline, but then refer to it as ME in the article. This results in people conflating the neuro-immune illness ME, with the symptom Fatigue, which is exactly what we need to be moving away from.

These articles, even with only one error, don’t do us any good. People who don’t know otherwise will read them and go away believing that we have safe treatment options and that we’re just tired. What if these people are on the review team for the NICE guidelines, or are in any way involved with decision making for the support, funding and treatment of ME? Or what if they’re just normal people who are one day presented with a petition to sign, or a campaign to fund for biomedical research? Well, they’ll look the other way, because as far as they’re concerned, based on those many articles they read, we’re already sorted, we have treatments and we don’t need their help.

I see other people with ME celebrating the press coverage, while seemingly not releasing that most of it is harming us. As long as this continues I don’t see anything changing. So what we need to do is comment on these articles, or contact the reporter directly, and put them right. Be polite, thank the reporter for the article, but inform them of the errors, and how those errors impact on people with ME. Then hopefully they’ll be encouraged to continue writing about us, but with the truth.

I was unable to attend the Edinburgh #MillionsMissing protest. Initially because I had hoped to go my mum’s fundraising party that day, but actually I was unable to attend either, making it a pretty miserable day for me. On the one day of the year that people with ME become that bit less invisible, I felt more invisible than ever.

Thankfully though, I was able to watch the events in Edinburgh as they were streamed live via Facebook! The opening speech was especially moving, and rousing, it made me sob, and it made me angry, as it should, it should make everyone angry. I also really liked this line from a poem read in the second clip (after Stuart Murdoch’s speech, about 26 mins in). “So you think I’m looking well. Thank you. But in return I’ll say. My brain and nervous system, aren’t usually on display.”. I think I’ll keep that for whenever I’m told I’m looking well. 😉

Here are some clips from the event, for those who would like to watch.

In this clip there’s the introductory speech by Gerry Farrell, laying of the final shoes and a crowd photo for the press attending.

In this clip Stuart Murdoch, lead singer of Belle & Sebastian, speaks to the huge crowd (at 17 mins in). Sing in the City Choir perform, and people read stories and poems of their lives with ME. 

In this clip MP Carol Monaghan speaks (at 31 mins in), Sing in the City Choir perform again, and more powerful stories and poems are read by and for people with ME.

In this clip Emma Shorter, co-founder of #MEAction Scotland, speaks (at 15 mins in) and leads a mass lie down in the precinct with shoppers and passers-by seeing hundreds of bodies on the ground. And the band Wolf in Sheep’s Clothing perform.

Many thanks to #MEAction Scotland for organising this incredible event, all the volunteers, an incredible effort by people with ME and our healthy allies. Thank you to all the speakers and performers. Thank you to everyone who attended. And thank you to the wonderful volunteer who live-streamed these clips for those of us unable to be there.

Petition

I often have people ask what they can do to help me. Well, this is it, this is what would help me. Please sign and share this petition. Every signature brings us closer to the goal of effective treatment and care for people with ME in Scotland, and beyond.

We are calling on the Scottish Parliament to urge the Scottish Government to review the level of support for people with ME in Scotland with a view to:

  • Investing in biomedical research and creating a centre of excellence for ME
  • Ensuring healthcare professionals’ training and education materials reflect the latest scientific evidence
  • Providing specialist care for patients and discontinuing the harmful treatments graded exercise therapy (GET) and cognitive behavioural therapy (CBT).

The deadline is 31st May and we need as many signatures as possible by then. You do not have to be Scottish or living in Scotland to sign!

Please Sign and Share!

http://www.parliament.scot/GettingInvolved/Petitions/PE01690

Watch our video to find out more!

Upcoming Blog Posts

Like I said earlier, I have many partially written blog posts, some of them I began writing over a year ago! Most of what you read here takes me weeks or months to write, I tend to dip in and out as and when I feel motivated and well enough.

If you’re wondering what’s to come, these are the subjects that I’ve been thinking of addressing…

  • A hugely significant reanalysis and evaluation of the discredited PACE Trial was published in March this year and it had an enormous impact. I began a post about this the same day, but have been too unwell to complete it. Soon, I hope.
  • Unsolicited advice, specifically, unsolicited medical advice – it’s the worst.
  • My experience of Ableism. It’s everywhere.
  • Hobbies, what I can and can’t do to occupy my time – how having ME has changed this.
  • How I cope with the isolation that living with severe ME brings – not very well.
  • Surprising things about ME – surprising symptoms and surprising ways in which my symptoms affect me.
  • My experience of ME awareness amongst medical professionals – it’s not good.
  • My experience of claiming disability benefits – it’s really not good.
  • Future employment options. What will I do should I be well enough to work again one day?
  • What chronic illness has done to my friendships – some strengthened, some distanced, some gone.
  • My depression and anxiety, in more depth – I’m honest about my ME, so why not my mental health?
  • The difference between being tired and having ME – lots of differences, they are not the same thing.
  • Hypersensitivity – one of the weirder symptoms I suffer from and it’s possibly the hardest to explain to other people – yes, the rustling sound of that plastic bag actually causes me pain.

Do you have any ideas for future posts? If there is anything you would like me to write about, I make no promises, but I’m happy to receive your suggestions!

 

NEWS

The (Australian) Guardian. To the #MillionsMissing with ME/CFS, something remarkable is happening.

https://www.theguardian.com/commentisfree/2018/may/12/to-the-millionsmissing-with-mecfs-something-remarkable-is-happening?CMP=Share_iOSApp_Other

The Canary. On Saturday ‘millions’ of ‘missing’ people will reappear for the day.

https://www.thecanary.co/discovery/analysis-discovery/2018/05/09/on-saturday-millions-of-missing-people-will-reappear-for-the-day/

The Scotsman. Belle and Sebastian singer Stuart Murdoch on coping with ME.

https://www.scotsman.com/news/health/interview-belle-and-sebastian-singer-stuart-murdoch-on-coping-with-me-1-4738083

Health Rising. Stanford Exercise Study Shows Different Immune Response in Chronic Fatigue Syndrome (ME/CFS)

https://www.healthrising.org/blog/2018/03/05/chronic-fatigue-stanford-exercise-immune-response/

The ME Association. A misunderstood disease wrongly labelled make-believe by some GPs is more devastating to sufferers than multiple sclerosis, a new scientific study has found.

http://www.meassociation.org.uk/2018/03/me-association-press-release-people-with-m-e-measurably-more-disabled-than-people-with-multiple-sclerosis-16-march-2018/

Health Rising. The Cortene Way: New Drug to Be Trialed in Chronic Fatigue Syndrome (ME/CFS) Soon.

Part Three. https://www.healthrising.org/blog/2018/03/16/cortene-drug-chronic-fatigue-syndrome-me-cfs-pt-iii-the-clinical-trial/

The ME Association. Chronic fatigue syndrome possibly explained by lower levels of key thyroid hormones.

http://www.meassociation.org.uk/2018/03/frontiers-press-release-chronic-fatigue-syndrome-possibly-explained-by-lower-levels-of-key-thyroid-hormones-20-march-2018/

BMJ Journals. Markers of non-coeliac wheat sensitivity in patients with myalgic encephalomyelitis/chronic fatigue syndrome.

http://gut.bmj.com/content/early/2018/03/17/gutjnl-2018-316133

The New York State Department of Health update their information about ME.

https://health.ny.gov/diseases/conditions/me-cfs/

The Evening Standard. Google Maps becomes more wheelchair friendly with launch of journey-planner tool for disabled people.

https://www.standard.co.uk/news/transport/google-maps-becomes-more-wheelchair-friendly-with-launch-of-new-tool-helping-disabled-people-a3791461.html

The Guardian. New initiative to address ticketing barriers for deaf and disabled fans.

https://www.theguardian.com/music/2018/apr/09/access-is-everything-deaf-disabled-live-music-events

STV News. Disabled Scots ‘will not face unnecessary medical checks’. New legislation paves the way for the creation of a new benefits regime in Scotland.

https://stv.tv/news/politics/1413084-disabled-scots-will-not-face-unnecessary-medical-checks/

 

Post Nineteen. Time For Unrest.

Unrest image.png

“A revelation and a call to action” – The Salt Lake City Tribune

“Riveting…equal parts medical mystery, science lesson, political advocacy primer and even a love story” – The San Francisco Chronicle

Jennifer Brea is an active Harvard PhD student about to marry the love of her life when suddenly her body starts failing her. Hoping to shed light on her strange symptoms, Jennifer grabs a camera and films the darkest moments unfolding before her eyes as she is derailed by M.E. (commonly known as Chronic Fatigue Syndrome), a mysterious illness some still believe is “all in your head.”

In this story of love and loss, newlyweds Jennifer and Omar search for answers as they face unexpected obstacles with great heart. Often confined by her illness to the private space of her bed, Jen is moved to connect with others around the globe. Utilizing Skype and social media, she unlocks a forgotten community with intimate portraits of four other families suffering similarly. Jennifer Brea’s wonderfully honest portrayal asks us to rethink the stigma around an illness that affects millions of people. Unrest is a vulnerable and eloquent personal documentary that is sure to hit closer to home than many could imagine.

I have been awaiting the arrival of this film for some time. It has been a few years in the making but I only found out about it after watching Jen Brea’s TED talk earlier this year. Having already been screened in other parts of the world, and winning lots of awards on its way, Unrest had its UK premier just a couple of weeks ago in London. For those of us too unwell to go to our closest screening, we had the opportunity to pre-order the film online, and patiently, or not so patiently, wait for the 31st of October, the day of its release.

On Tuesday I was finally able to download it and I watched it in stages over the following three days. What can I say…

It’s beautifully made.

It made me cry and it made me smile.

I felt validated. So often people tell me how I should feel. That I have to be hopeful, that I can’t give up, that I have to believe that I’ll recover. Watching this film reminded me that everything I have felt since having ME, every emotion and every fear has been valid.

It made me feel sad, angry and frustrated. I felt moments of grief and moments of rage. I also felt understood, and grateful. I felt like I belonged, like I was part of a community, an uprising!

Unrest: a state of dissatisfaction, disturbance, and agitation, typically involving public demonstrations or disorder

The most surprising reaction I had to the film, was that I found it strangely comforting. I had thought it would be the kind of film that I would only want to watch once, that it would be too difficult to watch it on repeat. But I have already started watching it for a second time, and I think will watch it again, and again, whenever I feel a bit lost or disconnected.

My ME is not as severe as Jen’s was (while she was making this film), but it was all so familiar. The opening scene is very effective. I found myself holding my breath as I watched Jen try, with every fibre of her being, with every ounce of strength she had left, to lift herself off the floor and into bed. I’ve never, thankfully, been that disabled by my ME, certainly not for such a prolonged period of time. I have experienced that complete lack of strength, the extreme weakness in my body, when I haven’t been able to lift my head or my arms, or have lost the use of my legs. But I haven’t been as severe as Jen, in terms of, I am mainly housebound and am bedbound for at least half of the day, but Jen has been bedbound for months at a time.

When it comes to the ‘fatigue’ that people with ME experience, it’s this extreme weakness, this complete lack of strength and pure exhaustion that we’re talking about. It’s so far away from the myth that we’re ‘just tired’, I mean, it’s just nothing like being tired. It’s like referring to a hurricane as, ‘just a puddle’. It’s so insulting, not to mention factually incorrect, to conflate the two.

I’ve been thinking a lot about why we, the people with ME, have needed a film like this to come along.

It’s this idea that ME is just ‘being tired’ that drives the general perception of ME. It’s what many people think, until they get ME, or know someone who has ME. But even when you know someone with ME, you don’t really see the truth. Because when you see us, when we’re well enough for you to see us, our illness is largely invisible. You don’t see us when we’re alone at home, or in bed, so it’s easy to misunderstand, it’s easy to forget about us.

A lot of the misunderstanding is also due the damaging name, Chronic Fatigue Syndrome (CFS). If the term CFS didn’t exist, and our illness was only ever referred to as Myalgic Encephalomyelitis (ME), it would change perception immensely. The name CFS has done so much harm. It makes people think we’re just fatigued, just tired. And why would anyone spend their time campaigning for, running marathons for, signing petitions for, writing to MP’s for, raising awareness for… someone who is just tired.

The name CFS has also caused problems, in that, it’s easy to conflate the illness CFS (ME), with the symptom ‘chronic fatigue’. This confusion has had massive repercussions. So far, in the UK, the only government funded research into ME has been for psychological research. The ‘scientists’ involved believe that ME can be cured by ‘lifestyle changes’, Graded Exercise Therapy (GET), and Cognitive Behavioural Therapy (CBT). (Please read my previous post on the PACE Trial for more info.) The problem is, the participants of the trials didn’t actually have to have ME (for which the defining/cardinal symptom is Post Exertional Malaise) in order to participate, they only had to have ‘chronic fatigue’. So, the only treatments that the UK, and beyond, have to offer people with ME, are GET and CBT, ‘treatments’ which have only been trialled, not on people with ME, but people with chronic fatigue.

It is, I believe, this false notion of what ME is, that has enabled the unbelievable situation that we are in today. It has held back funding for biomedical research, it is why we have no safe or effective treatment options, no cure, no support from our medical establishments and little respect from the general public.

I can’t blame all the people for not having a thorough understanding of ME, how can any of us know everything about every illness. But, I do blame people, whether friends, family, doctors, scientists, MP’s, journalists, employers, anyone who knows someone with ME, who has a patient with ME, or a constituent with ME, who choose not to inform themselves. The people who choose apathy or blatant disbelief, despite the wealth of knowledge available online, and worse, despite what they are being told by their loved ones. These people are responsible for the decades of neglect and mistreatment that people with ME continue to face. It’s because of these people, that we have to use our precious limited energy on informing, fighting, campaigning and advocacy. These people are the reason that the film, Unrest exists. If Jen had been believed by her doctors from the beginning, she wouldn’t have had to turn her camera on herself. Her doctors only believed her, not on her word, but only once they saw visual evidence. That was the seed that planted this remarkable, and vitally important film.

This quote from the film seems particularly relevant right now…

What terrifies me is that you can disappear because someone’s telling the wrong story about you. I feel like that’s what’s happened to all of us who are living this. And I remember thinking, there’s no one coming to look for me because no one even knows that I went missing.

We need people to start listening, we need people to start telling the correct story, otherwise, nothing will change.

Sadly, a few days ago, we lost a member of the ME community. She was a wife, a mother, an active member of the ME advocacy community. I’ve shared this Ron Davis quote before, who actually features in the film, “The good news is, these patients don’t die. The bad news is, these patients don’t die.” It’s not, strictly speaking, true. Yes, it’s more common to live with ME for decades, than to die from ME, but that’s not to say ME can’t kill, it can, and it has.

I heard about her death via Jen’s Facebook page, this is what she said…

I am sad but mad as hell. When our community loses someone to this disease, my first thought is always, “someone killed you.” Because someone did. A lot of people.

Think about what Jen is saying here. Today, in 2017, we are no further forward in treating this illness than we were thirty years ago. We, the people with ME, are in the same place today that people with MS were in before the invention of the CAT scan. We have been waiting for far too long for the invention of our ‘CAT scan’ machine.

How can this be, that science is so behind when it comes to ME? It can be, because of the misconceptions that people have about ME. That’s it. It’s that simple. These falsehoods, these misconceptions have held back progress. They have fuelled the lack of investment into biomedical research. While people continue to tell the wrong story about us, while popular opinion (aided by the likes of Comedian Ricky Gervais – see trailer below) continues to believe that we are ‘just tired’, we won’t get anywhere. In order to get adequate funding for research, funding that is in line with other serious conditions, funding that will SAVE LIVES, we need people to tell the correct story. And this, is the reason I do what I do. This is why I write my blog. This is why I publicly share such personal information. This is why I approached my local paper to feature my crowdfunding campaign, not for the donations for my wheelchair, but for the opportunity to raise awareness. This is why I share every article I find about ME on Facebook and Twitter. I cannot just sit back and accept society’s neglect of us. I will continue to fight, I will continue to do everything in my power to make a difference. And after watching this film I am more fired up than ever before.

Something else that came up in the film was the loss of friends, a strange phenomenon that so often runs side by side with chronic illness. Jen said something interesting in a recent Twitter thread, it was about some of the reviews of Unrest, but it got me thinking further about the issue of fading friendships…

About half the film critics reviewing Unrest have said not it’s a “must see” but rather that it’s “a hard watch”. I’m the last person who should be speaking about the quality of my own film. But I can’t help but think what they are saying is “sick and disabled people are hard to watch”. Which is another way of saying – I’d rather look away. What I say at the end of every screening is that Unrest represents for people on this part of the spectrum, the best case scenario. And so while the world says, this is almost too heartbreaking to bear, patients say, you don’t know the half of it. It’s the height of privilege to be able to look away from pain, whoever’s pain it is. And so we are forced to package our pain, meter it, make it acceptable to others in a form that seduces or implores in just the right way. Which is the dance that EVERY oppressed group whether female, black, gay, transgender or disabled has been doing since forever. It is exhausting because there are times all I really want to do is scream.

A few of my friends have drifted out of my life since my diagnosis, and especially since I moved out of Edinburgh. Jen’s quote above made me wonder, do they, like the film critics, find me ‘too hard to watch’? I’ll never know. Because those who have removed themselves from my life have done so without a conversation, an email, a letter, an explanation. Has it been easier for them to walk away, than to face my life as it is now, to see me and my suffering? Is Jen right, is that the height of privilege, to be able to look away from other people’s pain? Have my lost friends made a conscious decision to look away? Were they so accustomed to the friendship that we used to share, that they can’t, or won’t, adapt to this new life of mine/ours? Or maybe they just don’t like me, that would be preferable actually. It’s something that I have been, and will continue to think about for some time.

What Jen said in her Twitter thread also made think about how I present myself. I use my blog to communicate, and to share. It’s my way of talking honestly about my experience of living with this illness, packaged nicely, but without rubbing it in your face. I try not to sugar coat it, but I do end up, sometimes deliberately, sometimes not, doing just that. I protect you from the most harrowing bits, I try not to come across as too negative, I word everything very carefully. Basically, I try to make my existence, my life, more acceptable to you. My blog, while it goes part of the way there, it doesn’t go into the absolute raw reality of my life, no words could, as with every other ME patient, however much I share, you don’t know the half of it.

Now, I knew I wouldn’t get through this film without crying. The first tears I shed while watching it were at this point…

It was like I had died, but was forced to watch as the world moved on. If I completely disappear and I’m in this bed and I can do nothing then it’s like I don’t even exist or that I never existed. And then what was the point of it all? Of being born in the first place? You know and honestly there are a lot of days when I just feel like I’m doing a good job by just holding it together and not killing myself. Like I’m really proud of that. And it’s not – I really don’t want to die. Like I really don’t want to die. But at a certain point it’s hard to call this living and I think the grief of all those things I might not do or see or have or…

That was Jen speaking, but it could be me, I’ve said all of these things. I’m proud of me too. I believe that anyone who can exist through this illness, with the suffering, the stigma, the disbelief, the isolation… are in possession of the most incredible inner-strength. What we live through, for years, decades, lifetimes, most (healthy) people would find unbearable for just one day. We’re positively superhuman. If I get through this alive, I’ll be so goddamn proud of myself. But if I don’t, I won’t blame myself at all. Like they say in the film, suicide is the leading cause of death in people with ME, and that isn’t shocking to me. Like Jen, I don’t want to die, but I do want to not have ME anymore. This is one of the hardest things I have faced while living with ME, the effort of staying alive. Yet, while I do my hardest every day to keep going forward, to remain hopeful, I joined Dignitas (a Swiss non-profit members’ society providing assisted/accompanied suicide). It’s kind of funny, given its purpose, but it’s my Dignitas membership that actually helps me to keep going, knowing that I have that option, one day, if I choose, it’s like my comfort blanket.

Importantly, Unrest also has a focus on those who care for us. The people we couldn’t be without. I don’t feel I’m in a place to comment in much depth, given I’m the patient, and not the carer. But I do know how hard this life can be, the life of caring for someone with ME. And when the carer is a spouse, a sibling, or a parent, etc, it can muddy the relationship a bit. It was lovely to see, despite the odd bit of frustration, i.e. the tent scene, how much Omar values and loves Jen and their marriage. From what they showed us, they don’t seem to have lost what they had before ME joined the relationship.

I think Jen, her husband Omar, and all the film’s ME participants have been extremely brave in making this documentary. I’ve been wondering if I’ll ever be brave enough to turn the camera on myself, I can’t see it happening, but then I also never expected to blog about this stuff, or end up in my local paper.

I would also like to thank Jen, Omar, everyone involved in the making of this film. It’s already making a difference. Here in the UK we desperately need the government and the NHS to start listening. We need funding for biomedical research. We need the NHS to stop prescribing ‘lifestyle changes’ which only harm, rather than help. The biggest ever investment into biomedical research in the UK came from America, the NIH! We need our own government invest in us.

One of the wonderful things that the Unrest team were able to do was arrange a parliamentary screening of Unrest. Forty three MP’s attended. We can only hope now that these MP’s will start fighting for us. Labour MP Mark Tami has already said…

This sort of stigma around ME is exactly the sort of thing we need to eradicate. Little is known about the illness and there is no known cure for it, which is probably why society appears to be so ignorant towards it.

ME is clearly a very complex condition but as a country we are not doing enough for patients who are suffering from it. This essentially boils down to funding, I therefore intend to push the Government to provide sufficient funding, and ensure this funding is adequately spent in the right areas.

This is exactly the kind of response we need from this film. I want people (the ones who don’t have ME) to have their eyes opened by the brutality/reality of what they’re watching. I want them to be amazed at the resilience of the ME patients featured in the film, against all the odds these people keep smiling and keep hoping. I want this film to educate people. I want it to highlight the dire need for treatment and a cure. I want the people who have previously dismissed ME to admit they’ve been wrong, to put that aside and to keep educating themselves and others. I want our governments and our medical establishments to stop ignoring us. I want this film to push people into action, and if it doesn’t, I don’t know what will.

 

Unrest Official Trailer

 

Jennifer Brea’s TED Talk

 

WATCH UNREST

On the big screen (in Scotland)…

Vue GLASGOW Fort, Monday 27th November, 7pm. Buy tickets here… https://www.ourscreen.com/film/Unrest

Odeon EDINBURGH Lothian Road, Wednesday 29th November, 6pm. Buy tickets here… https://www.ourscreen.com/film/Unrest

Eastgate Theatre and Arts Centre PEEBLES, Thursday 18th January, 7.30pm. Buy tickets here… https://eastgatearts.com/events/unrest/. (Particularly pleased about this screening in my own town, in the theatre I used to work in! Arranged by myself, my mum and a good friend.)

For other screenings, search here… http://see.unrest.film/showtimes/

Online…

On iTunes… https://itunes.apple.com/gb/movie/unrest/id1265409535?mt=6&ign-mpt=uo%3D4

On Vimeo… https://vimeo.com/ondemand/unrest

On Google Play… https://play.google.com/store/movies/details/Unrest?id=iTC0y4l1Jgc

On Amazon Video… https://www.amazon.co.uk/Unrest-Jennifer-Brea/dp/B075LS6ZTZ?tag=geo01-21

On VUDU… https://www.vudu.com/movies/#!overview/894864/Unrest

On Netflix… https://www.netflix.com/title/80168300?s=i&trkid=14170032

On DVD…

Unrest is coming to DVD in December. Follow this link and fill out the form to receive a notification when DVDs are on sale… https://www.unrest.film/watch/#DVD

 

UNREST REVIEWS / UNREST IN THE NEWS

ITV News: https://www.youtube.com/watch?v=7UVmIc6FKnE

BBC Breakfast: https://www.youtube.com/watch?v=ZRAM7Q2nx10

The Daily Telegraph: http://www.telegraph.co.uk/health-fitness/body/could-documentary-change-way-perceive-chronic-fatigue-syndrome/

BBC / Mark Kermode: https://www.youtube.com/watch?v=NGoK56TdNQY&t=2s

The Times: https://www.thetimes.co.uk/article/our-lives-were-frozen-by-chronic-fatigue-syndrome-rdftnm75p

The Pool: https://www.the-pool.com/health/health/2017/43/the-pool-talks-to-jennifer-brea-about-unrest-documentary

Huffington Posthttp://www.huffingtonpost.co.uk/dr-simon-duffy/uk-establishment-me_b_18375968.html

BBC News / Stories http://www.bbc.co.uk/news/stories-41888146

The Daily Express http://www.express.co.uk/life-style/health/870117/what-is-chronic-fatigue-syndrome-symptoms-treatment-me-unrest

The Salt Lake City Tribune http://archive.sltrib.com/article.php?id=4867522&itype=CMSID

The New York Times https://www.nytimes.com/2017/09/21/movies/unrest-review.html?mcubz=0

San Francisco Chronicle http://www.sfchronicle.com/movies/amp/Documenting-a-disease-from-the-inside-12217878.php

Megyn Kelly TODAY https://www.today.com/video/filmmaker-opens-up-about-illness-that-doctors-told-her-was-all-in-her-head-1056956483601

Cosmopolitan http://www.cosmopolitan.com/lifestyle/a12779054/what-is-chronic-fatigue-syndrome/

Chicago Reader https://www.chicagoreader.com/chicago/unrest/Film?oid=31012439

San Francisco Weekly http://www.sfweekly.com/film/film-film/unrest/

Los Angeles Times http://www.latimes.com/entertainment/movies/la-et-mn-capsule-unrest-review-20170928-story.html

The Hollywood Reporter http://www.hollywoodreporter.com/review/unrest-review-967867

Film Inquiry https://www.filminquiry.com/unrest-2017-review/

The Washington Post https://www.washingtonpost.com/national/health-science/a-film-directed-from-bed-tells-the-story-of-woman-with-chronic-fatigue-syndrome/2017/11/24/05a42594-cec1-11e7-81bc-c55a220c8cbe_story.html?utm_term=.bae816e6532c

Rotten Tomatoes https://www.rottentomatoes.com/m/unrest_2017

Vogue https://www.vogue.com/article/unrest-documentary-netflix-chronic-fatigue-syndrome-wellness

 

Post Fifteen. Employed To Unemployed.

This week has seen a huge change in my life, it’s been brewing since early December but on Wednesday 7th June it became official. It was my last day of employment with Cyrenians, an Edinburgh based charity.

For nearly 50 years, Cyrenians has served those on the edge, working with the homeless and vulnerable to transform their lives by beginning with their story, helping them believe that they can change their lives, and walking with them as they lead their own transformation.

Our Vision is an inclusive society in which we all have the opportunities to live valued and fulfilled lives. We work to make that vision a reality by our Mission to support people excluded from family, home, work or community on their life journey.

Our way of work is built on our four core values:

Compassion: We believe that everyone should have the chance to change, no matter how long that might take.
Respect: We believe in tolerance, acceptance, valuing diversity and treating each other as equals.
Integrity: We are committed to the highest quality of work, grounded in honesty, generosity, sincerity and professionalism.
Innovation: We are willing to take risks, challenge convention and be very creative in our search for new ways of working, in particular by taking account of the environmental impact of our decisions.

I’ve worked for Cyrenians since July 2012 in the Community and Food branch of the charity. We ran the FareShare Franchise for Central and South East Scotland. FareShare is a national UK charity who redistribute surplus food from producers and suppliers to not-for-profit organisations that work with vulnerable people, such as homeless hostels, soup kitchens, community groups and childrens breakfast clubs. We, with our army of volunteers, got the food to those who need it the most, while helping to avoid excessive food waste.

It was a privilege to work for Cyrenians, yes it could be stressful, yes it could be physically and emotionally challenging (I have cried in the walk-in freezer on more than one occasion), but taking a job there was one of the best decisions I’ve ever made. I have met some wonderful people. The volunteers I worked with, even though I haven’t seen them for over two years, they still inspire me. I mean, sometimes I struggled with the 7am starts. I’d walk to work in the dark on a rainy winter’s morning to arrive at the depot (that was usually colder inside than outside) to be met by smiling volunteers, ready to start their busy shift of putting the food orders together. All the volunteers, in all of their roles, with their dedication, willingness and hard work are really what made this job for me. Of course distributing seven tonnes of food per week and feeding thousands of people was good too, as was driving the forklift!

My forklift qualification wasn’t the only slightly bizarre but memorable aspect of this job. I once spent an afternoon stacking over 3000 haggis (haggi?) in our freezer. The tens of thousands of Snickers bars that we received because they were put in the wrong wrappers. I’ve seen ‘behind the scenes’ of many supermarkets and their distribution warehouses, yes I find this fascinating, really! I’ve got an Intermediate Food Hygiene (with credit!) qualification from The Royal Environmental Health Institute of Scotland that I wonder if I’ll ever have a use for again. I was once forced on stage by the Scottish singer/songwriter Dougie MacLean to give a speech about Cyrenians in front of a couple of hundred people. I’ve helped a poor delivery driver clean the back of his van when a yoghurt delivery went wrong and two pallets of yoghurts basically exploded in his van. Then there was the simple pleasure of working away at the computer to have a volunteer appear with a cup of tea that they’d made for me, I swear many of them could read my mind. There were a lot of sombre moments too of course, and I have many memories of a more saddening nature. But I feel pleased, and fortunate, that I was in a position to help and support people, when help and support was needed. I’m incredibly proud of the work that Cyrenians do, and am so proud to have worked there for the time that I did.

I have been off work sick since December 2014, and I have been in the fortunate situation in which my employer was keeping my job for me. This couldn’t last forever though, and as devastated as I was when I was told in December that I may soon have my contract terminated on the grounds of ill-health, I understand why. I admit to having had some less than kind thoughts about Cyrenians in the last few months, I suppose it’s been part of my process, in which I have come to terms with my unemployment. I haven’t left Cyrenians in ‘disgrace’ and it has nothing to do with my performance or ability to do my job, but it took me a while to accept this particular ‘life event’.

Despite the stressy bits, I really loved my job. It took me until I was thirty two years old but I found what I felt was the perfect vocation for me, and I had honestly envisioned myself quite possibly working for Cyrenians for the rest of my life. Not necessarily in the same service, but I admire the Cyrenains values, I share those values and I’ve never had a better employer, or felt more proud about the work that I was doing. My future is pretty uncertain now (oh dear, the song ‘Beauty School Drop Out’ from Grease is now going round my head! “Your future’s so unclear now, what’s left of your career now…”). Sorry, anyway, I don’t know if I will ever be well enough to work again. I hope I will be, but I have no idea what that work will be. I could go back to Cyrenians, I know I’ll be welcome should a suitable job arise, or maybe I’m destined (I don’t believe in destiny or fate, but I can’t think of a better word) to continue my work to raise awareness and campaign for people with ME.

It wasn’t until I got ‘the news’ in December that I really realised how much of my self-worth is tied up in my employment. My initial feelings when I heard the news was that I had lost my value, that I had been stripped of my identity and my feelings of self-worth went down the toilet. I had already not been working for over two years. I was technically employed but on long term sick leave, now I’m properly unemployed, my day-to-day life hasn’t changed. So why all these feelings?! Maybe it’s just reaffirmed the things that I miss the most, the most precious things that I have lost due to my illness; my ability to work, my ability to earn my own living, my ability to live independently, my ability to contribute and my freedom to live my life in the way I choose. Something else that’s been nagging away at me is that unemployment in general, is not looked kindly upon by society. I’ve heard friends, politicians and acquaintances in the past deride unemployed people, I’ve heard them make unfair generalised comments about benefits claimants. Now that I’m one of them, what do those people think about me?

Anyway, I can see this post steering away from the point and developing into a rant about the Tories, so I’ll end this here. (FYI That Tory rant will appear in a future post about my experience so far as a benefits claimant.)

I’m so pleased that I had the opportunity to work for Cyrenians and I’m forever grateful to my three previous colleagues, who were on my interview panel and who gave me a chance. I worked with some amazing people, not just in my service but all over the organisation, I made lovely friends and I learned so so much. I’ll miss the freezing cold depot, I already miss it, but I know they’ll continue doing the fantastic work that they do, for as long as they need to do it.

PS If you like the sound of Cyrenians and the work they do then I’d recommend you follow the CEO, Ewan Aitken’s blog. You may also like to browse the Cyrenians and FareShare websites.

Post Fourteen. ME and Me, By Amelia.

Welcome to my first guest post, written by my very talented niece Amelia, who is twelve years old.

It began a school assignment, ‘A primary seven personal project about a subject of her choice of interest to her’. To my delight and surprise, Amelia chose to do this assignment on the subject of Myalgic Encephalomyelitis (ME), and how my illness affects her. It’s an impressive piece of work. She did her own research, she chose some really descriptive images, and she makes some very interesting and insightful observations. I admit that when I read her first draft, it had me in tears, in a good way! I am just moved beyond belief that Amelia chose to use this as an opportunity to raise awareness of ME, I’m so proud of her, and I’m a little bit in awe of her to be honest. Again this has made me feel so incredibly lucky to have such supportive people in my life.

Everything else you’ll read below, is by Amelia.

 

ME and Me, by Amelia.

“The good news is, these patients don’t die. The bad news is, these patients don’t die.” Ron Davis – Geneticist

This quote was made by a Californian geneticist whose son suffers from Myalgic Encephalomyelitis.

Myalgic Encephalomyelitis, commonly known as ME is a chronic illness which has affected my family since early 2015 when my Auntie Phoebe was first diagnosed.

In this report I am going to first tell what ME is, how it is caused and some of the symptoms of ME. I will write about the very common misconceptions that many people have regarding ME. I will write about how it affects my Auntie Phoebe and how it affects me and my family. I will also write about what is currently being done to help sufferers and how we can help people who are affected by this horrible illness.

Myalgic Encephalomyelitis

What is it?

Myalgic Encephalomyelitis, also know as ME, is a terrible illness that affects hundreds of thousands of people across the UK and millions worldwide.

It is a neurological illness, which means that there is something physically wrong with the nervous system. It is also a chronic illness, which means it is life long and there is currently no cure. It affects many body systems like the nervous system, which is the network of nerve cells that communicates with the brain, and immune system, which fights germs and diseases.

Many ME sufferers have severe, persistent fatigue. Fatigue is another way of describing extreme tiredness.

Not everyone who has ME will have the same symptoms so it is impossible to compare them to one another. Two people might get ME at the same time from the same probable cause but one could recover in a few years and the other could have it for the rest of their life. That’s one of the reasons why it’s a very hard illness to understand.

img_0762Symptoms of ME

· Post-exertional malaise. This is the extreme exhaustion felt after any physical or mental activity, such as a phone conversation, filling out a form, taking out the bins or making tea, or the worsening of all symptoms.

· Gastro-intestinal problems. These are problems with the stomach, gut and intestines.

· Cognitive dysfunction. This is also known as brain fog. When you have brain fog, you are unable to remember, reason, concentrate and think.

· Headaches

· Sleep problems

· Muscle weakness

· Intense pain all over the body

· Depression, as ME limits human interaction so much so it is easy to become depressed.

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These are only a few of the many symptoms. Every ME sufferer experiences different symptoms at different times.

Causes

The exact causes of ME are unknown, but there are many theories of what they could be. Here are some of them.

· A viral or bacterial infection that damages your immune system

· Your genes

· A hormonal imbalance

· Immune system problems

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What can be done?

The NHS have created a treatment plan for ME sufferers that is meant to relieve their symptoms. Many ME specialists disagree strongly with these methods as they have been proven to cause harm to patients. The plan consists of daily exercise, like swimming and walking. ME sufferers are sometimes unable to stand up, how could exercise help them?

It would tire them out so quickly, they would have to interact with others and the payback the next day would be horrific. These plans could worsen patients significantly.

There is no cure for ME. Invest in ME, which is a research charity trying to find a cure for ME, is hopeful that one day there will be a cure. Current treatment can only treat the symptoms, not cure the illness.

img_0765Common Misconceptions of ME

ME is a very misunderstood illness that people don’t take seriously. It is commonly called “yuppie flu”, which is offensive in so many ways to ME sufferers and their families. In the 1980s, it was dismissed as yuppie flu or shirker syndrome. People said that if they went out for some fresh air or even go see a therapist, that they would feel better. Some people said they were faking it or some put it off as being a bit tired. Due to modern research, these horrible remarks and rumours have been proved wrong but there are many people out there whose belief of ME needs to be put straight. The more people that are told the truth about ME, the better.

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My Experience of ME

My Auntie Phoebe was diagnosed with ME in early 2015.

Before she was diagnosed, she was a shift coordinator working at a food depot run by a homelessness charity. She was in charge of recruiting, training and supervising volunteer workers and helped manage the depot. She organised pick ups and deliveries of food to many charities working with homeless and vulnerable people in Edinburgh. She loved being in such an important position and giving people a chance to get back on to their feet. She also loved driving a forklift truck!

A few months before she become ill, in May 2014, Phoebe was offered her dream job, working at the Penguin Post Office in Port Lockroy, Antarctica. In summer 2014, she started to feel ill and went to several doctors and consultants before being officially diagnosed with ME. Heartbroken, Phoebe had to withdraw from this amazing opportunity. She has been practically house bound since then. Just over a year ago, she had to move from Edinburgh to Peebles to be nearer my Grannie. She had to stop working in 2014 and now lives on (very few) benefits and her savings.

One of the things that Auntie Phoebe does to help her come to terms with her illness is to write a blog called puffins&penguins&me about her experience of ME. It is beautifully written and very informative.

She also encourages her friends and family to hold fundraising events. Last March, the day before Mother’s Day, my mum and I held a fundraiser for Invest in ME. We organised a mother and daughter afternoon tea in the Scout Hut in Currie. We advertised on Facebook and sold etickets. We made many different kinds of cake and sandwiches, served tea and coffee, borrowed massage tables and set up a nail bar so mothers could get pampered by their daughters. We also asked local businesses for raffle prizes and sold tickets. We made £651 and we gave half to Invest in ME and the other half to my gymnastics club.

It was my Grannie’s birthday a few weeks ago, which happened to be on National ME day on 12th May. She threw a party wanting only donations for Invest in ME. She made over £1000!

One of the most difficult things about ME is that sufferers do not look ill. Phoebe went to Grannie’s party and looked beautiful. She managed to stay out for nearly 3 hours, which is the most socialising she has done in years. What people don’t see is the suffering she had the next day.

This is an excerpt from her blog.

“Today I woke up with the worst ‘hangover’ of my life. That’s the best way to describe it. Before you say anything…I only drank water last night, I can’t drink alcohol since I’ve had ME. It took me over two hours after waking up this morning to be able to move and get out of bed, despite desperately needing to pee. I had to crawl to the bathroom, and then back to bed to rest from the overexertion of going to the bathroom. I wanted to brush my teeth but I couldn’t hold my arm up. After another hour of lying down I was able to come upstairs to prepare coffee and something to eat. My head is absolutely pounding, my sinuses are throbbing, my throat hurts, my limbs are heavy, my muscles are aching, there’s an imaginary elephant sitting on each of my shoulders weighing me down, my skin is sore, I’m nauseous, my tonsil wounds are hurting again, it hurts to swallow, I feel faint and dizzy, I’m weak, I feel like I have a temperature (ok, I just checked it and I do have a temperature) and my brain is absolute mush.”

Before she got ME, I would see my auntie all the time, have days out, sleepovers and holidays together. Now Phoebe is so affected by this horrific illness that I rarely see her. Often we arrange to meet her but then she is so ill that we can’t even pop in to say hello or give her a coffee. I love her so much and I would see her everyday if I could.

A Typical Day

These are Phoebe’s words but I have changed them a bit.

  • 10pm – 1am – Falling asleep – this never happens easily and often takes hours.
  • 1am – 11am – Broken sleep, often with hours of wakefulness. A symptom of ME is insomnia.
  • 11am – 2pm – I try to wake up and get up. This can often take hours. When I wake I feel paralysed. I wash my face and brush my teeth and check emails. I can no longer shower every morning.
  • 2pm – I go upstairs and make breakfast. I am completely vegan and eat nothing processed.
  • For the next few hours – I lie on the sofa, sometimes watch tv. I can’t read a book as I can’t focus for long enough. I have to close my eyes for 5 minutes every half hour to regain some energy but I never nap. I slowly prepare dinner, having a rest every few minutes. A 20 minute meal takes over 3 hours to prepare. Sometimes my mum comes in to visit me, she does my dishes and takes out the bins. I listen to music. I suffer from pain every day. I also have sensory overload so I wear noise cancelling headphones and only take them off when I have a visitor. I leave the house every Wednesday for an appointment with my counsellor and rarely leave the house apart from this.
  • Late evening – I go to bed and it all starts all over again.

What you can do to help

I am not going to tell you to become a neurological scientist to help ME sufferers. There is one very simple thing that you can do to help. TELL PEOPLE! All you need to do is tell others about this illness. It doesn’t matter who it is, your mum, dad, grannie, grandpa, uncles, cousins, friends, as long as you are telling someone. Tell them to tell others too! I know it sounds like a movie plot but seriously, just spreading the word can help. So, please help brighten the future of ME and tell everyone you know about this horrible illness.

On Friday 12th May, there was a demonstration outside the Scottish Parliament, trying to persuade SMPs to spend more time understanding this illness. This movement is called #millionsmissing meaning that millions of people are missing out on their lives. It was symbolised outside Parliament by pairs of shoes that never go outside. Here are Auntie Phoebe’s work boots on her forklift truck.

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I know it won’t happen overnight but I really hope that one day, science will have found a cure for ME.

Glossary

Myalgic Encephalomyelitis – A medical condition characterised by long-term fatigue, pain and other symptoms that limit a persons ability to carry out ordinary activities.

Neurological – relating to the anatomy, functions and disorders of the nerves and nervous system.

Post-exertional malaise – The exhaustion felt after any activity and worsening of all symptoms.

Cognitive disfunction – also known as brain fog which means you can’t think clearly.

#millionsmissing – the movement of ME sufferers and supporters to make ME a more understood illness.

Post Thirteen. My Mum’s Birthday/Fundraising Party for Invest In ME.

My mum shares her birthday with ME Awareness Day and last night she held a birthday/fundraising party for Invest In ME. Instead of presents and/or cards she asked for only donations. She still has a few promises of donations to come, but it’s looking like she will have raised over £1000 in total! Incredible!

I attended the party and I don’t know how I did it but I managed to stay for three hours and had multiple conversations with my mum’s friends, mainly answering questions about how ME affects me. It was a lovely evening and a welcome distraction from the terrible week I’ve had.

I knew it was more than I could safely manage. Throughout the evening I knew I should escape to a quiet room to lie down for a rest, but I really didn’t want to drag myself away from the party. I miss out on so much already, I couldn’t bear to miss out on the fun going on around me. So I unadvisedly pushed through.

Today I woke up with the worst ‘hangover’ of my life. That’s the best way to describe it. Before you say anything…I only drank water last night, I can’t drink alcohol since I’ve had ME. It took me over two hours after waking up this morning to be able to move and get out of bed, despite desperately needing to pee. I had to crawl to the bathroom, and then back to bed to rest from the overexertion of going to the bathroom. I wanted to brush my teeth but I couldn’t hold my arm up. After another hour of lying down I was able to come upstairs to prepare coffee and something to eat. My head is absolutely pounding, my sinuses are throbbing, my throat hurts, my limbs are heavy, my muscles are aching, there’s an imaginary elephant sitting on each of my shoulders weighing me down, my skin is sore, I’m nauseous, my tonsil wounds are hurting again, it hurts to swallow, I feel faint and dizzy, I’m weak, I feel like I have a temperature (ok, I just checked it and I do have a temperature) and my brain is absolute mush. I remember feeling like this in the past, but it was easier to cope with when it was self-inflicted through an excess of fun and alcohol. All it took on this occasion was three hours of pleasant conversation the evening before.

This was the first party I’ve attended since 2014, and the first situation I’ve put myself into that I knew would involve constant interaction and conversation with people. I knew it was a risk. This is the worst payback I’ve experienced for quite a while. It’s made me realise that up until last night, I’ve actually been fairly good at pacing and managing my activity to avoid PEM (post exertional malaise). I hope in one evening I haven’t undone any progress I may have made so far. When this bout of payback is over will I go back to how I was doing pre-party? Or is this the beginning of a new phase in my illness? I have no idea. But this is something I have to think about with every single decision I make. I have to weigh up the pros and cons of everything I do. Will the boost to my mental and emotional health outweigh the potential negative and possible long lasting impact on my physical health? I don’t know. It’s impossible to know. I go into everything I do blindly.

While I’m punishing myself for my stupidity and desire to be ‘normal’ for an evening, I can at least take comfort in the fact that the charity, Invest In ME, who campaign for biomedical research into ME, will soon have over £1000 to invest into ME research. This is on top of the money raised by my friends and family in the past few weeks. I have great people in my life who are going out of their way to raise awareness of ME and who are raising money for much needed research.

I’m also quite sure that after this bout of payback fades, that I’ll only have fond memories of a lovely evening. My mum still lives in the house I grew up in, it’s a wonderful and beautiful Victorian house full of lovely memories. It was really lovely last night to see the house and garden so alive with people, chatter and music. The children played on the garden wall and surrounding trees, my niece waited on the guests in style with her bow-tie and flowery Dr Martens. The food was excellent, the wine was flowing (not in my direction obviously) and the live music was a lovely touch. And above all I’m so touched by the incredible generosity of my mum’s friends who donated their time and money, and my wonderful mum, who donated her birthday to help find a cure for ME.

Post Twelve. How You Can Help.

People often ask me what they can do to help me, which is lovely. Within the texts and the emails I receive from my friends I often see ‘I wish I could do something to help you’, or a variation of the same sentiment. Generally speaking, I don’t expect help, no one has any duty nor obligation to help me or make my life easier. But, I have to admit to the fact that I can no longer do everything myself, I do need help. I need to accept help, and what is harder, I need to ask for help.

I’ve known this for a while, but what really brought it home was my recent experience while in week two of my tonsillectomy convalescence. There were a few days when my mum was very ill with a cold, she had a temperature and really had to stay at home and rest. She wasn’t able to do the things she normally does for me, she was just too unwell. For four days I was alone, with ME, post-surgery and with a cold too. I was running out of things that I needed but I couldn’t go to the shops, I can’t even do that on a normal ME day. I felt incredibly lonely, and the isolation made me feel very low in mood. I couldn’t bring myself to reach out and ask anyone to pop by for a visit or to go to the shops for me. I need to be able to ask for help. I really don’t know if my inability, apprehension, discomfort and/or fear of doing so is a normal chronic illness thing, or a Phoebe specific thing. Anyone?

Now, I had already planned a blog post about how my friends and family can help me in terms of raising awareness and fundraising etc, and I’ve decided to expand on that. So this post is to let you know what you can do to help me, should you wish to. There is no pressure and there are no expectations on my part. I’m being very honest and upfront about the variety of ways in which people can help me. But I know people are busy, people have families, and jobs, and worries and stresses of their own, and my needs shouldn’t come before your own. I will however be asking something of you, it’s a big deal, and it isn’t easy for me. But I have to, it’s probably the next step before I one day, maybe, need to hire a carer.

The ways in which you can help me basically boil down to the following…practical support, emotional support, raising awareness/campaigning, and fundraising.

Practical Support

Most of my practical support comes from my mum. She empties my bins, she washes my dishes, she changes my bedding, at the moment she does my cleaning because I’m currently without a paid cleaner, she does my shopping, she washes my hair when I’m too weak and she drives me to appointments. When my mum has been on holiday I have a friend who has stepped in and done some of these things for me, but she really had to push me to accept that she wanted to do these things. Obviously to be able to offer me this kind of practical support you need to live locally, I have friends and family far and wide who I know would help me with the practical stuff if only they lived closer.

My recent experience of suddenly being without my mum for a few days made me realise that I need to put something into place, should this happen again. What I need, I think, is a pool of people who would be happy to be on stand-by for situations like these. Someone who I can text asking if they could fill my prescription, or go to the shops, or put my wheelie bin out etc. But for me to be able to ask this of someone, I need to know, explicitly, that they are happy to do so. A vague offer of ‘let me know if I can do anything for you’, will never result in me asking you to do something for me. Maybe that’s a bit twisted, maybe it’s really weird of me, but that’s how I need it to be. The ‘let me know if I can do anything to help’ offers are kind, but I just don’t know, under such vague terms, what would be too much for me to ask. I think that’s the crux of the matter.

So, if anyone, who lives locally, who I know personally, would be happy to receive a text from me, should I need assistance with something, please let me know. It’s very likely you will at some point receive baked goods in return.

Emotional Support

While my geographically far away friends and family can’t help with my chores they can, and they do, keep my spirits up by keeping in touch via email. I have a few friends and family with whom I keep in regular contact using email, Facebook messenger or text. They check in regularly, they send recipes, articles or music that they think will interest me, and they simply keep in touch, just like they did before I was ill, or more so. I think many understand just how much more I need that, now that I’m so isolated and withdrawn from ‘real life’. Importantly they also understand that there might be a delay of a few days, or weeks, before I can reply, there’s no pressure for me to push myself to reply when I don’t have the energy or strength. I also have a few lovely friends who frequently send me incredibly thoughtful gifts, cards and letters through the post. This is seriously going above and beyond, but it’s always extremely appreciated. It’s a cliché what people say, that during the hard times you learn who your friends are, but it’s true. It really can bring out the best in people, and there’s the opposite, but let’s not dwell on that. At the moment I want to celebrate those who have helped me through this, because I couldn’t do it without them.

What also keeps me going is receiving visitors, this is what I live for. I like catching up with friends in person and chatting over coffee and cake as much as I ever did. Unfortunately with my circumstances being what they are, I have to limit how frequently I can see people and I have to put a time limit on each visit. Scheduling visits can be tricky, and despite my empty life, my calendar fills up remarkably quickly. To help you understand…to avoid PEM (post exertional malaise) I need to rest between activities, so I make it a rule not to schedule activities on consecutive days. Activities can include GP appointments, hospital appointments, Sainsbury’s deliveries, a friend visiting, going for a drive with my mum or counselling appointments etc. So lets say my friend who I maybe only see once or twice a year wants to visit but she can only do weekdays. Well, I have counselling every Wednesday so Wednesday’s are out, I need my rest day before and after counselling so that means Tuesday’s and Thursday’s are out. So we’re left with Monday’s and Friday’s. But if I already have plans for that Saturday then Friday is out, or if I have strayed from my plan and have a GP apt on the Tuesday (because it’s all she had available) then Monday is definitely out. I also try to stick to only one additional activity per week, on top of counselling. More than two activities per week is really pushing it for me, and from past experience I’ve learned it is extremely unwise, no matter how much I want to. Do you see why, despite my empty life, it can become tricky to schedule in a visit? It’s not because I’m living a full and exciting life, it’s because I have to plan everything, meticulously, around my illness and what is best for my health. I am learning, for the first time, how to put myself first, and it doesn’t come naturally to me. I understand that my lack availability might be off putting for you, I might come across as flighty, or like I don’t really want to see you, or like I’m making excuses, but I promise you, I want to see you. We both need to accept that it just might be a few weeks or months away, and that’s ok, it gives me something to look forward to, and I like that.

Raising Awareness and Campaigning

Raising awareness is incredibly important, because no one is going to fund research for an illness they are not aware of. Some people may think they are aware of ME, but the amount of misinformation out there is staggering.

What I want, is for ME to have the same impact as any other serious and life-altering illness/disease/condition. I hate that the world of chronic/serious illness is seemingly divided into cancer and not-cancer, but people ‘get’ cancer, they understand the seriousness of cancer. When you hear that someone has been diagnosed with cancer, you immediately feel the full impact of the horror of that disease. When you hear that someone has been diagnosed with ME, you possibly think they are just a bit tired, that a bit of rest will cure them, that it’s all in their head, that they just need to exercise, that they need to change their diet, that they’re lazy, or you might make a joke about yuppie flu. I’ve heard all of these. What I want is for people to understand the horror of ME. I want people, when hearing that someone they know has been diagnosed with ME, to ‘get’ it. I don’t expect non-sufferers to understand the intricacies of having ME, just like I don’t know the intricacies of having cancer, I’ve never experienced it, but I get the gist. I know that it destroys lives, it can tear families apart and it desperately needs a cure. So does ME; and people, our government, our health care workers, they all need to know that. Understanding would go such a long way in achieving the health equality that we, the 17 million people with ME, deserve.

This is probably the easiest thing I could ask of anyone. If you have a Facebook or Twitter account you can easily spread awareness by sharing any ME articles, or blogs I post. You can sign and share the petitions I share. You can follow the ME pages that I follow. Just by liking what I post on Facebook it will show up on your friends newsfeeds. You can also share my own blog. There’s bound to be at least one of your Facebook friends who thinks that ME is nothing more than ‘being a bit tired’. If sharing articles or my blog posts on your newsfeed can put that one person right, then that’s a job well done, the next time they hear a ‘yuppie flu’ joke they can put that person right. This is how you spread awareness, people power! Spreading awareness is one of the biggest and most meaningful things you can do for me, besides you know, finding a cure.

ME Awareness Month

You may or may not be aware but May is ME Awareness month. I can’t mention everything that is happening this month, this post is already pretty long, but I want to bring the #MillionsMissing movement to your attention.

#MillionsMissing is a movement to raise awareness for ME, which as you know is an underfunded and ignored illness. On May 12th 2017, ME Awareness Day, thirteen cities in nine countries will demand change. We ask for increased government funding for research, clinical trials, medical education and public awareness. I’m delighted to tell you that there will be a protest event in Edinburgh this year. This will be on Friday 12th May 2017 from 12:00 PM to 14:00 PM outside the Scottish Parliament Building. People with ME, their friends, families and carers will be there, and maybe a MSP or two. But there will also be lots of empty pairs of shoes with tags attached, these will be representing the #MillionsMissing. The millions of people with ME who are missing from their jobs, their families, their communities, their lives. Please join in if you can, and tell people, or if you pass the protest and can’t stop, take a quick photo and share on social media, with the #MillionsMissing hashtag. Click on the #MillionsMissing link above and scroll down to the blue section to find your closest protest.

Unrest

I’d also like you to look out for the documentary film, Unrest. Director Jennifer Brea was a journalist and academic studying for a PhD at Harvard. Months before her wedding, she became progressively ill, losing the ability to even sit in a wheelchair. When told by her doctor it was “all in her head,” her response was to start filming from her bed, gradually deploying crews globally to document the world inhabited by millions of patients that medicine forgot. I’m in communication with the Edinburgh Filmhouse to have the film screened there on it’s general release in the autumn, but it will be screened at various film festivals before then. You can also watch Jennifer Brea’s poignant TED talk ‘What happens when you have a disease doctors can’t diagnose’, here.

Please visit my About page to see which additional charities/movements I’d encourage you to follow on social media.

Fundraising

ME is a vastly underfunded illness, especially when based on the impact to the life of a person with ME, when compared to other illness. I couldn’t find relevant information for the UK, but, here is an article estimating the disease burden of ME in the United States and its relation to research funding. It’s pretty grim reading.

Donating money is an easy concept, for those with the financial ability to do so. Fairly recently, I think it was after I wrote Post Nine, a few people got in touch and asked me what my preferred ME charities were, in terms of donating money. If you feel that you would like to make a donation, these are my preferences…

Invest In ME

Invest in ME was formed in 2005 by patients and carers of children with ME. It is run by a small team of dedicated volunteers, the charity has no paid staff and keeps all costs to a minimum. They campaign and fundraise for biomedical research into ME. They really do so much, it would be a whole blog post to do them justice, please check out their website for more information. Invest In ME are my first choice, in terms of monetary donations.

Edinburgh ME Self-Help Group

Founded over 20 years ago, Edinburgh M.E. Self-Help Group (edmesh) is a support group for people with ME. They are a membership organisation run by a committee of volunteers and have no paid staff. Most of the committee have ME themselves.

#MEAction

#MEAction is an international network of patients empowering each other to fight for health equality for ME. It is not structured like a traditional advocacy organisation. They are a platform designed to empower patient advocates and organisations, wherever they might be, with the technological tools and training to do what they are already doing –better. They were founded with the belief that while we may find it difficult to advocate for ourselves in the physical world, in the virtual world, we can be an unstoppable force. This is exactly what I plan do to with the rest of my life, even if I get better, I’ll never stop advocating for people with ME.

Now for anyone who would like to challenge themselves whilst raising money for a ME charity you might be interested in…

Walk for ME

Friends and family of a ME sufferer do a sponsored walk, run or swim on their behalf, hence the name Walk for ME. The aim is to get as many friends and loved ones as possible to do a sponsored walk or other sponsored event during ME Awareness month in May, although it can be held in any other month. Walk for ME supports Invest in ME and ME Research UK. Both of which fund biomedical research and therefore offer the potential to help millions of people get their lives back. The whole idea is that a friend or family member is doing something that their loved one would love to be able to do but can’t because of their illness.

Something a bit easier…

Use the Easyfundraising website to collect free donations by shopping online. First you select your charity of choice on the easyfundraising website, I chose Invest In ME. To raise money, instead of going directly to the retailer website, log into easyfundraising first and click on the retailer you want to shop with. You’ll then be taken to the retailer’s website where you shop as you would normally. But because you visited easyfundraising first, your cause gets a donation.

Thank you!

Now I have some public thank you’s to give.

My friend Jo recently completed a 5k swimathon for Invest In ME, Marie Curie Cancer Care and the Swimathon Foundation. It’s not too late to sponsor her! Here’s a post-swim message from Jo…

“With your help, I’ve raised £235 online for Invest In ME so far. I completed the swim (all 200 lengths) last night in 1 hour 50 something – I was too tired at the end to pay attention to the time I was told. It’s my slowest time but considering how little training I did it wasn’t bad! I was 2nd in my pool last night out of 6 people doing the full 5km so I’ll just remember that fact! I lost count at 28 lengths, kept going for a good long time and had a break at 112 (I asked my counter), then sped up to 150, another few sips of squash and then to the end. A hat and goggles that were too tight combined with my lack of fitness gave me a killer eye/headache so I’ve been pretty lazy today. Almost feeling back to normal now with just achy shoulders. I know many people, especially my ME suffering friends would be ecstatic with that sort of recovery rate – that’s why I’ve raised this money to go towards researching this horrible disease.”

My friends Gillian and Ritchie are taking part in a 5k inflatable obstacle course, Gung-Ho! this month to raise money for Invest In ME. Please support them by sponsoring them in their bouncy endeavour! In Gillian’s words…

“My dear friend Phoebe has ME and since her diagnosis her life has been drastically altered resulting in her having to give up on most of her life time goals and ambitions. Even day to day life that we all take for granted are a struggle for her. I’m sure if you take the time to read her story you will understand how devastating this illness is.”

My 12yr old niece Amelia, with assistance from her mummy, my sister Emma, held a charity Pamper Afternoon Tea for mothers and daughters on Mother’s Day. They raised £631 which was split between Invest In ME and Amelia’s gym, Astro Gymnastics, which is in need of bigger premises. Amelia wanted to include a ME charity in her fundraiser because…

“I chose to raise money for Invest in ME because it is a charity that is very personal to my whole family. My Auntie Phoebe suffers badly from this condition and is currently unable to work, socialise or have any kind of normal life. So it is the best charity we could raise money for. It affects many people and raising money for Invest In ME could help other people with ME. It also will help raise awareness for ME. It is a very misunderstood illness and more people should know about it. We would love for Invest in ME to find a cure for this terrible illness.”

My mum happens to share her birthday with ME International Awareness Day, and this year she is donating her birthday to Invest In ME! She is holding a fundraising birthday garden party and instead of gifts and cards she is asking for only donations. In preparation she is currently experimenting with methods of keeping vast quantities of baked potatoes hot, and she is having hooks put into the back of the house to attach a tarpaulin, in case of rain. Although, so far in her life it has apparently only ever rained on her birthday twice, so the odds are in our favour.

My friends Chiara and Alex are getting married this summer and instead of gifts they would prefer their guests donate money to a charity, a concept that I love. They have chosen Invest In ME as one of their charities.

I have a few other friends who have floated the idea by of fundraising for Invest in ME, and hope to do something in the future, you know who you are, and thank you to you too.

Lastly, all the people who read my blog, who share it, who visit me, who help me with the boring practical stuff, who read the ME articles I post on Facebook, who sign the petitions I share, who keep in contact with me, who send me the articles, recipes and music you think I’ll like, who send me surprises through the post, thank you. x