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 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 Fifteen. Employed to Unemployed.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Post Fourteen. ME and Me, By Amelia.

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

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

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

 

ME and Me, by Amelia.

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

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

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

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

Myalgic Encephalomyelitis

What is it?

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

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

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

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

img_0762Symptoms of ME

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

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

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

· Headaches

· Sleep problems

· Muscle weakness

· Intense pain all over the body

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

img_0763

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

img_0764

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.

img_0766

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.

IMG_8664

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

Glossary

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

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

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

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

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

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

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

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

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

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

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

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

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