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 Twenty Six. How Having ME Has Affected My Mental Health.

I would like to warn you that this post may be triggering to those who have experienced suicidal thoughts.

I feel like this post is a bit all over the place. I’m currently struggling to put my thoughts in order, and I keep going back for further edits. I have so much to say, and so much I’m scared to say, but I feel that it’s important to be honest about how having ME really affects me. I often feel I’m a failure for succumbing to depression since having ME, but the more I share, the more I hear from others who are in the same situation, and that makes me feel like I’m maybe not quite so crazy after all.

I’ve become used to sharing details about my life with ME, and I want to become used to sharing details about my depression and anxiety too. They all have stigmas attached, they needn’t and they shouldn’t, but they do, and the only way I can see to remove the stigmas attached to these illnesses is to normalise them, and that means talking about them, and how they affect me. I love what Geroge Monbiot said in a recent-ish article in The Guardian about his prostate cancer diagnosis…

“There are, I believe, three steps to overcoming fear: name it, normalise it, socialise it. For too long, cancer has been locked in the drawer labelled Things We Don’t Talk About. When we call it the Big C, it becomes, as the term suggests, not smaller, but larger in our minds. He Who Must Not Be Named is diminished by being identified, and diminished further when he becomes a topic of daily conversation.”

I love that, “name it, normalise it, socialise it.”. I think that can be applied to ME, depression and anxiety, and any stigmatised illness. The attached stigma, the misunderstanding, the shame, the mystery, will diminish when it becomes a topic of daily conversation. So I plan to do that, here and in person, no matter how uncomfortable people are to hear it.

It’s not at all uncommon for people with ME to develop depression and/or anxiety. I always feel quite amazed when I hear from someone with ME who hasn’t had it impact heavily on their mental health. I would be one of those people if I could. But just as I can’t ‘just stop’ having ME, I also can’t ‘just stop’ having depression or anxiety. This seems to be a difficult concept for some people. They can say they understand, but then their lack of understanding can jump out at me during conversation. When talking to people about how my depression or anxiety is affecting me, I’ve been told “you just need to not let it upset you” or “you just need to stop worrying about that”. But would the same people say, about my ME symptoms, “you just need to not let that migraine hurt your head”? I don’t think so. ME gives me symptoms. Depression and anxiety also give me symptoms. That’s how it is.

Right now, one of my main obstacles (symptoms) is, what I call, the nervous dread. It’s the feeling of fear that I often get, and is the exact same feeling that I had as a child when I woke up terrified after a nightmare, except now, the nightmare is my life, and the feeling can last for days at a time. What comforted me as a child, when I woke up after a nightmare, was to crawl into my mum and dad’s room, make a little nest on the floor with my quilt and go to sleep there. That helped me because I knew I was safe, that I had someone looking out for me and that I wasn’t alone. This feeling of dread is often how my anxiety and depression manifests, and I (and my counsellor) believe that it basically stems from the same place, the fear of being alone, forgotten or abandoned. I don’t just mean the literal isolation that I live in, or the fear of being abandoned and forgotten by the people in my life, although that affects me deeply too. I’m also talking about the general lack of understanding about ME as a whole –  the lack of funding for biomedical research, the lack of support from our healthcare providers, the lack of recognition by our governments and our media that ME is a serious, disabling and life-threatening illness – this too all makes me feel abandoned and forgotten, invisible.

It’s not just ME, depression and anxiety are vastly misunderstood illnesses too. I used to be one of the people who didn’t fully understand depression, but I’ve never disbelieved anyone. When someone told me how their depression affected them, I can’t say I always understood it, but I believed them, because why on earth would someone lie about that? I’ve had people confide in me about suicidal feelings, before I ever felt such things myself. The first time I had no idea what to say, I just had to wing it, I sensed that my friend needed to talk, so I let them talk. I think, I hope, I handled it sensitively. I always think about what my words mean to others, I never want my words to hurt anyone. Importantly, I didn’t tell them how they should be feeling. I never tell people what they should feel, people tell me what I should be feeling, a lot. When I tell people about my fear of never being well again, for example, I’m told I should be more positive and feel hopeful. Why? Why, for a moment, can I not just feel what I feel? Are people with incurable illnesses, who are unable to live the life that they want, who have had everything stolen from them, never allowed to feel despair, or grief, or sadness, or frustration, or anger? Sometimes it seems, apparently not, and when we do, we must keep it to ourselves.

I have a huge amount of fear about never being well again. I do not want to live the rest of my life as I am now. Most of the time I keep it to myself, but sometimes I want to talk about it, and cry about it, I want to be able to talk about what scares me. But more often than not I’m met with ‘but there will be a breakthrough one day’ or ‘they will find a cure’. Really? You know that for sure? You’re 100% certain about this? The fact is, not all illnesses have cures. Not everyone who gets ill, gets better. People die from illness all the time, sometimes quickly after an aggressive illness, sometimes slowly, after decades of a malingering chronic illness. To reach some sort of acceptance about my life with ME, I need to accept all the possibilities, and one of them is never getting better. To be shut down when I try to talk about this only adds to my isolation, and loneliness, and as a result, my depression worsens.

When people insist that I will get better, it can be really hard to hear, it makes me feel so much pressure, because if I don’t get better, then somehow it must be my fault. I would love it if people, when saying this, would also acknowledge, in the same conversation, that I might not get better. Being hopeful is fine and good, but also be realistic, acknowledge my life, don’t erase me, my suffering or my fears. No one knows if I will recover or not, no one. It’s entirely possible that I will not, and when I talk about that, it’s my attempt to try to normalise it, to accept this, it doesn’t help to then be shot down. Once I’ve accepted it, then I can work on making my life, as it is, as meaningful and fulfilling as possible. I cannot spend my life clinging on to a potentially false certainty that a cure will be found, because if that doesn’t happen, I won’t be able to handle the devastation. I’d much rather learn to live my life, as it is, as well as possible, and one day, hopefully, maybe I’ll be surprised with the news that there is a cure, or a treatment that works, but I cannot pin all my hopes on that, it’s simply too much pressure for me to cope with.

How I feel (mentally) is often, unfortunately, and unhealthily (I think), at the mercy of other people. My illness has caused a lot of the people in my life to drift away. I’ve been left with very few people I feel close to, and I’m constantly worried about losing them too. Because of my anxiety, and due to living in this bubble, with too much time to think, any perceived (by me) slight from one of these people is magnified by a million, I obsess over it, to a scary degree. If I extend an invitation to someone to visit me, for example, and it’s ignored, the reasons why will consume me. My paranoia will take hold and it will eventually lead me to a very dark place. But it is important to state that no one is responsible for me feeling like this, it’s not even me, it’s the illness. I don’t want anyone to feel they have to distance themselves from me, for fear of triggering my mental health problems. My depression and anxiety will find a way, when they want to, and they often do pop up with no obvious trigger whatsoever.

People are also what I need, when I’m at my lowest, in order to survive. I can’t speak for everyone, but, there’s this myth that you can’t speak about suicide to someone who has suicidal feelings. Like, if you mention it, it will suddenly give them ‘ideas’, but the thing is, those ideas are already there. The word ‘suicide’ itself, does not make me suicidal. I only feel that way when my depression is at its worst, at the moment, it’s happening roughly twice a month (I think severe PMS may play a part). The rest of the time, I can feel low, without feeling actively suicidal, but I do spend a lot of time thinking about my own death, and hoping for a natural death, my escape from ME. When I am thinking about doing it myself, and wishing I had ‘the guts’ to do it, it becomes overwhelming, and what helps me get through it, is talking about it, in that moment, that’s what generally diffuses it. Sharing how I’m feeling, however ugly, scary, upsetting or uncomfortable, with someone who cares about me, whom I trust, who can make me feel less alone, is what helps me through it. I think people worry that they won’t know how to respond, that they won’t have a solution, that they won’t know how to ‘fix me’. But they don’t need a solution, I’m not asking for a solution, or to be ‘fixed’. Just be there, just listen, just let me talk about how I feel, tell me you’re here for me and that I’m not alone, let me cry, let me feel I’ve been heard, tell me that what I’m feeling is ok and that you understand. I need people who will willingly give me their time, who will accept me and all the elements of my personality that make me ‘me’, people who can be patient with me, especially if I need to go over and over the same conversation, people who can be kind to me when my depression and anxiety are making me be unkind to myself.

Ultimately I try to remember that when I feel this way, I must not make a permanent decision based on what is likely a temporary feeling. With that and the fear of it going wrong and ending up worse off, and the thought of someone having to find me afterwards, is what has stopped me so far. But it’s an incredibly painful battle each time, it’s the worst thing I’ve ever experienced in my life.

What I just said about needing people to accept me and all of the elements that make me, ‘me’. This would include not telling me, when I’m in a pit of depression or an anxiety spiral, that I’m ‘too sensitive’, for example. I am a sensitive person, but I’ve come to learn that that’s not a bad thing. I’ve grown up with people telling me that I’m ‘too sensitive’, and it’s always come across as accusatory, or derogatory, so I used to think it was something to feel ashamed about, that it made me weak. But this is actually a really important part of who I am, and I wouldn’t change it. I’m able to tune into and understand my feelings, and it helps me tune into the feelings of other people too, it’s what gives me empathy. I would like it if this sensitivity didn’t impact as heavily on my anxiety and depression as it does, and this is something I am working on with my counsellor. For example, I’m very sensitive to how my actions affect others, when I find out that I’ve hurt someone, it hurts me, deeply. My anxiety will then take hold of me, I’ll agonise over it for days, weeks, months or years (I can still feel anguish over things that have happened decades ago), and it won’t let me move on until I have resolved it. It’s exhausting, it prolongs the upset, it keeps my body in a constant state of fight or flight, and that impacts heavily on my ME symptoms.

I asked my counsellor recently, in desperation, how I could stop letting things that upset me, upset me. This led to a conversation that actually resulted in me feeling a lot better about who I am. I can’t just change the things that make up the elements of who I am, and I certainly wouldn’t want to erase my sensitivity completely, not if it meant losing my empathy. I like empathy. I think it’s a highly admirable quality, and it’s the quality I value the most in others. I’m not suggesting that I’m better than anyone else, or anything. But I have always considered what my actions, or my words might mean to another person. One of my faults is that I tend to expect the same from others, and I judge them for not living up to my high standards, and the only person who gets hurt by that, is me.

Anyway, It’s not surprising how frequently people with ME develop depression and/or anxiety. We’re grieving for everything that we’ve lost, and the grieving process works the same way whether it’s due to the loss of a loved one or the loss of your health. I’ve grieved for people, I know what that’s like, I still feel pangs of grief when I think about my dad. When it’s unexpected, like when I come across an old photo, or I have a dream about him, I get a jolt of emotion that rushes through me, often picking up other memories and feelings on the way. I can think I’ve been doing ok, in terms of my dad grief, but I can very quickly turn into a panicked sobbing wreck when triggered unexpectedly. And he died ten years ago (it was ten years on 4th June). I’m still a newbie in the ME world, four years in, and I’m still very much dealing with the loss of my old life, and the loss of everything that I thought my life could become. I can be having an ok day, where, despite the sheer shittiness of my illness, I can be feeling fairly calm and content with what little I have. But then, BAM, something comes along that triggers the grief and throws me off course. I’m talking panic attacks, hyperventilating, the nervous dread and when it becomes too overwhelming, and when I feel that I’m dealing with it alone, suicidal thoughts. Sometimes the grief makes me curl up into a ball and just cry and cry, sometimes I just want to tear the room apart with pure rage and anger, sometimes it just renders me numb, flat, completely emotionless, and sometimes it makes me want to die.

For a while I really thought I was doing so much better, in terms of accepting my illness. But I’m not doing well, not at all. It’s kind of been compounded recently due to the payback I’ve been suffering since Iceland and also with my current PIP (Personal Independence Payment – a UK disability benefit) application. At the moment I’m trying to cope with the knowledge that this particularly bad relapse is probably due to my own decisions. The trip to Iceland to see Sigur Rós, going to my mum’s house for three hours to spend time with my family for a belated Christmas celebration only four days after returning from Iceland, then the screening of Unrest just thirteen days after that. The trip was at the end of December, and I still haven’t returned to my pre-Iceland levels of ME, and I don’t know when or if I ever will. Some ME relapses are permanent, and right now, I’m trying to deal with the fact that I may have done this to myself. This has caused what I can only describe as a shitstorm of emotions and symptoms; grief, anger, guilt, hopelessness, anxiety spirals, panic attacks, and suicidal thoughts. All of this emotional over-exertion of course impacts on my ME, and causes those symptoms to worsen. When this happens I wish I could talk my way out of it, but I just can’t. It’s actually entirely rational, to grieve over the loss of ones own life, whilst still being alive. I do believe that feeling these feelings will help me on my way to acceptance, more so than repressing them anyway.

My PIP application. I’ve put this off since 2015, my first attempt was just so traumatic, but I need the money, and I am eligible, it’s just a matter of convincing the people at the DWP. I haven’t received the ‘How your disability affects you’ form yet (I requested it two weeks ago) but in the meantime I have been preparing for it. This means I’ve spent a lot of time thinking, in depth, about how my illness affects me, which is the exact opposite of how I usually try to cope with this. I’ve lost my independence and my freedom, I do not live my life as I want to, I don’t even live where I want to. My entire life is now entirely about compromise and adaptations, based around my ME. I’ve made so many adjustments to my life in order to manage my illness. I’m used to the fact that I now only wash once per week, rather than once per day, as I did pre-ME. I’m used to the fact that I only eat twice per day, rather than three times per day, as I did pre-ME. I’m used to the fact that I can’t leave my house every day, as I could pre-ME. My day-to-day life is now built around my limitations, and sometimes, I feel quite proud of the way I’ve adapted. My life now, while completely unrecognisable when compared to my pre-ME life, is simply, my life. It is what it is. But now, as forced by my PIP application, I have to really think about how my illness affects me, and not in a ‘I’m proud that I’ve adapted’ kind of way, but in a ‘bloody hell this is thoroughly depressing, my life is total shit, I can hardly do anything anymore’ kind of way. I used to manage sixteen hours of non-stop activity during a day, now I struggle after fifteen minutes of activity. My capacity for doing stuff is now around 10% of what it was before I was ill. When writing it down for my PIP form, and explaining why I can only wash once a week, and how it affects me, it’s nothing to feel proud of, it’s depressing. When I write about why I can only prepare two meals per day, it’s depressing. When I explain why I can’t leave the house every day, it’s depressing. I expect this has a lot to do with the current state of my depression.

I mentioned the isolation. This is a huge factor in the state of my mental health too. I’m an introvert, I enjoy my own company and before ME came along, solitude was a choice for me, a luxury, even. But my depression and anxiety have turned me into someone who fears to be alone. When I get this nervous dread, I panic at the thought of having a day without human company. But I also have severe ME, so I don’t have energy to interact with humans every day, when I do, my ME symptoms worsen. So it’s a constant unwinnable battle between my ME and my mental health. Even with my introverted tendencies, I/humans need interaction with other humans, real life interaction. Social media is great, but it doesn’t compensate for the lack of real people in my day-to-day life. Add in the fact that I spend my days in the dark, because I’m sensitive to light. I also spend my days in an artificial silence, always wearing either noise cancelling headphones or ear plugs, because I’m hypersensitive to noise (and I currently have some rather loud neighbours, human and canine). I’m either huddled alone in bed, or alone on the sofa. Maybe I could cope with it a bit better if I could get lost in a book, but I have brain fog, I can no longer follow a story line, I can’t retain or process new information. I tried audio books but I can’t cope with them either, I simply don’t possess the required levels of concentration, my wreck of a body cannot produce the energy needed. Who knew, before I had ME, that reading, something I did every day, getting through roughly one novel per week, could one day be an impossibility. I have loads of TV shows and films in my Netflix and Amazon Prime watch lists, but at the moment I can only watch what I’ve seen before, because I can’t keep up and follow new story lines. I have a few TV shows that I keep on reserve for easy watching –  Grey’s Anatomy, The Big Bang Theory, 24, Parks and Recreation, Gilmore Girls, Little House On The Prairie, Gossip Girl, Friends… Re-watching these shows, as well as helping me to pass the time, I find it comforting, the familiarity of the characters. It’s the closest thing I have to going to work with the same people every day.

I’ve mentioned before that I’m a member of Dignitas (a Swiss non-profit members society providing assisted/accompanied suicide to members of the organisation who suffer from terminal illness and/or severe physical and/or mental illnesses). Dignitas, for me, is a separate topic, it’s not about depression, I actually became a member before I had depression. It is not based on fleeting suicidal feelings or fluctuating depressive episodes, it isn’t a knee jerk reaction, it’s not something I can’t understand, it is not something that scares me. Even when I’m feeling at my best, both in terms of ME and my mental health, Dignitas is still an option, and a rational option at that. If I decide to go this way, it will be based on rational and careful thought and discussion with my GP and counsellor. I won’t even get the provisional green light from Dignitas if they don’t trust my decision and believe me to be of clear and rational mind. Knowing that that Dignitas is there gives me comfort. The application process is daunting though, in terms of the paperwork, and it’s expensive. Just to make the initial request, that may be turned down, costs over £2000. Some people make that request and pay the money, get the provisional green light, but not follow through. Apparently, gaining that initial green light, can provide an additional layer of comfort, that allows people to keep going, knowing they do now have that option. That might be an option for me too at some point. I do think, when/if the time comes that I simply do not want to carry on with my life as it is, Dignitas is a much better option that suicide by my own hand, and so much easier on those who are left behind. Ideally, assisted/accompanied suicide will one day be legal in the UK, or Scotland, but I can’t see it happening anytime soon, the UK are rather behind, when comes to some things.

At the moment, in terms of ME, there is a feeling of potential change in the air. The film Unrest and the charity #MEAction have done so much for the awareness of ME worldwide. My mum attended the Invest In ME Research annual conference last week and heard some of the most prominent scientists in the field of ME research speak, she said there was a feeling of hope in regards to the current biomedical research. The NICE (The National Institute for Health and Care Excellence – the UK Department of Health organisation who provide guidance on the appropriate treatment and care of people with specific diseases and conditions) review of the ME guidelines is on the horizon, and will be completed by 2020. My fellow #MEAction Scotland volunteers met with the Scottish Parliament Petitions Committee today to discuss our recent petition (online and on paper we ended up with around 7000 signatures!) in which we are calling on the Scottish Government to review the level of support for people with ME in Scotland, in terms of biomedical research, education for healthcare professionals and specialist care for patients (the link to watch this is at the top of the NEWS section below). Some MP’s, including Carol Monaghan, recently put forward a request to the House of Commons Backbench Business Committee for a full debate about ME in the Main Chamber at Westminster. This has now (kind of) been granted, not for the Main Chamber, but for a three hour debate about ME treatment and research in Westminster Hall. Hopefully this will lead to a debate in the Main Chamber of the House of Commons in the Autumn.

So there are people doing things, and I want to feel hopeful, but so have the people who have been living with ME for decades, and seen no change. It is possible that biomedical research will find the cause of ME, to then find there is no cure. It is possible that the NICE review won’t in fact change everything, or they may change the guidelines for the worse. It is possible that the Scottish Government and Westminster will continue to neglect people with ME. We still have a long way to go and I want to be able to hang on, but I don’t know how long I’ll be able to. I don’t want it to, but I’m currently living knowing that my depression may one day ‘get me’. At the moment I’ve told myself I can’t go anywhere before the NICE review in 2020. I like to give myself a date, something firm in the diary to cling on to. The NICE review might just change things for the better for people with ME in the UK, and I at least need to live to see what happens there. Hopefully by then, I’ll have found something else to live for, I’ll have managed to find meaning in my life, I’ll have found somewhere to live that makes me happy, comfortable and settled (and with less need for noise cancelling headphones), and hopefully I can keep that going, and keep pushing back that date in my diary, at least until I’m an old lady with lots of cats.

When I do die I want my body to be utilised for ME research. If you live in the UK, this is how you can help progress ME research after you die. The ME Association is the only ME charity involved in the collection of post mortem tissue samples from people diagnosed with ME/CFS in the UK and their aim is to establish a national ME/CFS Post Mortem Tissue Bank where greater numbers of samples can be collected and stored for vital research. Learn more here:

http://www.meassociation.org.uk/research/current-research/post-mortem-tissue-bank/

Follow these links to mind.org.uk to learn about depression and anxiety.

Depression

Anxiety

 

NEWS

The Scottish Parliament Public Petitions Committee hear evidence from Emma Shorter and Janet Sylvester of MEAction Scotland and Professor Chris Ponting, Chair of Medical Bioinformatics at Edinburgh University and Deputy Chair of the UK CFS/ME Research Collaborative.

https://www.scottishparliament.tv/meeting/public-petitions-committee-june-7-2018?clip_start=10%3A10%3A46&clip_end=10%3A55%3A21

Futurism. Scientists are now calling the link between depression and inflammation caused by a faulty immune system definitive. Whether it’s causal or not, the connection opens up new avenues for treatment, and new hope for sufferers. 

https://futurism.com/researchers-depression-may-be-a-physical-illness-linked-to-inflammation/

ME/CFS Research Review. A team led by Edinburgh University’s Professor Chris Ponting has won funding for a PhD student who would follow up and expand on remarkable recent findings made at Stanford University, where Dr Mark Davis may have pinpointed a major issue in the immune system in ME/CFS.

https://mecfsresearchreview.me/2018/05/31/a-plan-to-replicate-mark-daviss-remarkable-findings-of-immune-activation-in-me-cfs/amp/?__twitter_impression=true

The ME Association. Inquest Ruling: Young drama student Merryn Crofts killed by ME.

http://www.meassociation.org.uk/2018/05/inquest-ruling-young-drama-student-merryn-crofts-killed-by-m-e-18-may-2018/

The Times. ME sufferer who was dismissed as hysterical vindicated in death.

https://www.thetimes.co.uk/article/me-sufferer-merryn-crofts-who-was-dismissed-as-hysterical-vindicated-in-death-lq9j2lc7w

Health Rising. The Migraine Drug Explosion Begins: Could Fibromyalgia and ME/CFS Benefit?

https://www.healthrising.org/blog/2018/05/19/migraine-drug-explosion-fibromyalgia-chronic-fatigue/

 

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 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 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