This week is ME Awareness week. It’s an illness that I’ve lived with on and off for over a decade. In recent months I’ve had a bit of a flare up of the illness that has been a struggle (which I talked about in my last post). But I wanted to write a bit more about my journey with this illness. Some of this is taken from previous posts I’ve written in the past.
ME is the better known initials for Myalgic Encephalomyelitis, and is more commonly known as Post-Viral or Chronic Fatigue Syndrome (CFS).
I’ll be honest, I had my doubts that this disease even existed, until suddenly, at age 19 I realised I couldn’t push through it anymore. Why was I so tired? Why did I permanently feel like I was coming down with cold/flu? Why did I wake up unable to bend my joints because of the pain? Why the sudden weakness in my muscles?
All that happened was that in April 2003, I got a cold. It lasted for a little bit longer than usual. But no big deal. It’s just a cold. It wasn’t like the previous year when I was sick with glandular fever.
But as I’m tried to study I was falling asleep on my books. I was getting enough sleep but still tired. And the morning I woke up not able to move I just burst into tears. I was freakin’ terrified.
I carried on anyway (because that’s what I’d always done in life) and eventually I fainted from exhaustion after one of my exams. So I went to the doctor. Mainly because now my friends were moving from ‘slightly concerned’ to ‘a wee bit terrified’. There was no way I could hide my symptoms to the people who saw me day to day.
You have post-viral fatigue syndrome said the doctor. She said there’s was nothing she could do, I just needed to rest and wait it out for now.
Lucky it was summer, and I had no other plans until university started back up in September.
And so I had to learn to rest. I had to learn to let people help me. I had to cope with needles as they took blood test after blood test.
Because I wasn’t getting better.
And then I had to realise that the church looks at people who have post-viral fatigue syndrome as unreliable and not a good role model. It was true – my body was unreliable. It was failing me. At times my mind was failing me. But what really hurt was people questioning my character.
So I made myself much worse trying to prove that I wasn’t unreliable. Finding it very difficult to cope with feeling better, thinking I was finally recovering, having several good days, maybe even a couple of weeks… only to walk into a lecture sit down and realise I was so exhausted and aching that there was no point of me being there because I couldn’t take anything in. I would be in pain. I would be in tears with the sudden tiredness that hadn’t been there 30 minutes before.
A strange blessing was that I’d put on 1/2 a stone during my second year at uni. Thank God. Because while I was ‘recovering’ and been told by the doctors suggested had a million and one other things (depression, stress, asthma, PMS, arthritis…) and I went back to uni to start a new degree I lost more than a stone. Credit to my high school friends, they didn’t say a word about how scarily thin I looked when I came home that next summer until much, much later when I started to put it back on. I also went to try and give blood for the first time. Thank God I did. They weighed me, and I discovered just how much weight I’d lost – I only weighed about 7st 6lb (104 lb) which was NOT good.
I also ended up in A&E when I fainted in my car – I’d thankfully pulled over because I was feeling weird and shaky. The doctors thought I was pregnant but nope, my body had ‘a virus’ in it. I had no fever, no sniffles… I just slept for a week.
I don’t think I would have got a university degree had it not been for the set up of the Health Sciences programme. It worked really well for me. Every day we had classes until lunchtime that started at 9.30 am (which meant that I was never walking to university in darkness – this helped a lot because I also suffer from S.A.D.). That 30 minute difference from 9 am to 9.30 am was massive. We had afternoons off, which I could use to study and do my coursework. Everything was generally in the same place so there wasn’t the exhaustion of going to and from lectures and tutorials back and forth across a large campus. I also had a day off in the middle of the week which I could either use to do coursework or recover if I was having a difficult week health wise. I didn’t do any uni work on Sundays (ever – not even the day before an exam) and Saturdays were a day to chill and maybe do some chores that I had no energy to do throughout the week. It was all about managing my time and having regular rest slots.
My mantra was – there’s no point in getting a good degree if it comes at the cost of my health. I do my best, I live my life….and if that’s not good enough, I have to accept that.
I didn’t pull a single all-nighter during honours year. Not even for my dissertation. I knew that if I even tried it would likely set me back for weeks.
I did have setbacks, and some other health issues that popped up (not least catching mumps – ugh!) but the course was small and the department were amazingly supportive and kind. I always felt they had my back and I think that in itself helped immensely. Rather than being ready to mark a red pen for being off sick, instead when I crawled my way to uni they would say Are you sure you’re ok to be here?
In a strange way ‘recovery’ has been the hardest part. You think you are better, you start doing more…and then you pay for it and you are right back to square 1 (or worse). When I first moved back to Edinburgh I would catch everything and be ill for weeks. Now I find that my immune system is slightly better and am more ‘fighting it off’ for ages before I finally succumb and get better a bit more quickly. I even managed not to catch a few bugs going around the youth project last year that everyone else got.
Perhaps that why this more recent relapse has felt like a side swipe.
I have to be careful about getting sleep – if I miss sleep I have to catch up with it quickly otherwise it is game over within 24 hours. I’ll get a cold, the brain fog comes (I’ll not know what day it is, struggle to string sentences together and just not be able to concentrate), I will feel nauseous and sometimes dizzy.
I also have to be careful about busy days. If I feel great, the temptation is to try and get lots done. MISTAKE. I’ll get so far and then totally crash. Just because my calendar is free doesn’t mean that my energy levels are. Sometimes an exhausting day is going to happen – like I deliberate took a day off after my sister’s wedding because I knew I would be exhausted. If I’m doing something with Girlguiding on a Saturday afternoon, I probably won’t have ability to be somewhere in the evening.
It’s also important to have understanding, supportive people around you. I’m very lucky to have that at work and especially amongst some of my close friends. I would have gone completely insane without them. They encourage me, reassure me, give me hope when I’m feeling hopeless…but most importantly they accept me exactly the way I am.
What I most love about the friends who have stuck by me, is that 11+ years of knowing me with this illness they get my humour about it. That’s my coping mechanism. When I’ve forgotten what day it is we have a giggle together. They will sympathise and laugh with you when you tell them how you dropped your phone on your face because your hand didn’t have the strength to hold it. They try to smile when I’m laughing about walking like an old lady/John Wayne. They send me pictures of things I like or a simple emoji when I’m stuck in bed. We talk about pyjamas like some chat about designer shoes. As an extravert I love being around people, and this illness really isolates me. So when I have friends that know how much I love being in their presence despite not really being able to participate and they allow space for that – it’s incredible.
To the friends that haven’t. I don’t blame them for not wanting to be friends anymore. It’s tough having a friend whose body can’t be relied upon. People have their own problems and worries and burdens. I really do get that.
I hope that one day we find some actual treatments for this illness. That would be lovely. But until then…we will keep on keeping on as best we can.
And if you are a fellow spoonie, remember that you aren’t alone. There’s people who do ‘get it’. Your experience is likely different from mine. You’ll experience different symptoms. Some of you had to give up university degrees. Some of you can’t walk. Some of you still can’t get out of bed. Some of you are better than you were. Some of you are worse than before. Some of you like me thought you were better and are experiencing a relapse.
No matter who you are or what your experience is…know that your story has value and it matters.
Thank you for being you.