May 12th is ME/CFS awareness day. So lots of us are blogging about our experiences today.
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?
I am not very good at dealing with illness. I have got better, mainly because I had to. It has been a difficult journey though with many contributing factors.
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.
But as I’m trying to study I’m falling asleep on my books. I’m getting enough sleep but I’m 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 (no special treatment, remember?) and eventually I fainted from exhaustion after one of my exams. So I went to the doctor.
You have post-viral fatigue syndrome she said.
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.
And then I had to realise that the church looks at people who have post-viral fatigue syndrome as unreliable.
So I made myself much worse trying to prove that I wasn’t. 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.
The scariest thing was how it began to affect my mental health. I began to have panic attacks – usually because I’d fall asleep, but wouldn’t be properly asleep. I’d have flashbacks or wake up with all my muscles feeling seized up and find it difficult to breathe. So I’d start to panic. Which of course made it even more difficult to breathe. I’d hyperventilate and start shaking. Which made me feel sick. Which freaked me out because I thought I’d be sick. So then I’d start blacking out.
And so a few times I had paramedics called out. I twice ended up in A&E because of that. 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.
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 Edinburgh friends, they didn’t say a word about how scarily thin I looked until much, much later when I started to put it back on.
Things turned around when I finally lost the plot and went to a GP that had really helped one of my friends with an ongoing problem that kept taking him to A&E.
“How can I help you today?” said the kindly doctor
“You can start by reading my file from the last year…because I’m fed up” I replied in a semi-irate tone.
He first was shocked, told me to come off half the prescriptions as there was no need for them (I agreed and told him I already had long ago) and then said…it’s obvious that you just have Chronic Fatigue Syndrome.
Sweet relief. I didn’t have asthma, arthritis or any of the rest of it at all.
And he gave me the advice I needed to cope and get better.
I went home to Edinburgh that summer, and ended up with a job working for a Christian-run respite centre for adults with learning disabilities. I became a valued part of a team there and we had each other’s backs.
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) and had a BMI of 17.8 (Normal range is 18.5-24.9).
So working in the respite centre I was using up a lot more calories, so I needed to eat almost constantly through the day to start putting the weight back on. By the end of the summer I managed to hover around 8 stone. Phew.
When I went back to university I began my Junior Honours year of my Health Science degree. I returned with a new work ethic.
I only worked Monday-Friday. I went to uni at 9.30, did my seminars in the morning, had lunch and then worked until no later than 5 p.m. Occasionally if I had a big essay due in I might work on a Saturday afternoon. I always got 8 hours sleep.
On Saturdays I didn’t set an alarm – I woke up when I woke up…this way I had the chance to catch up on sleep if I needed to. I would have a chilled morning eating breakfast sprawled out on the cushion pile watching One Tree Hill and The OC on Channel 4. I would do housework on that day, but that was my chill-out day.
On Sundays I was up to go to church – the girls who lived nearby would come round and then we’d walk or go in Cassie together. We would either stay in church for lunch or go out to a cafe/pub for lunch – all the young adults together en masse.
We stopped going to church every Sunday evening when we realised we were getting exhausted from our Sundays been so crammed full, that we’d wake up on Monday shattered and not in the best place for beginning our uni week.
I kept that system up all the way through to my final year – even during finals & my dissertation. I always had one rest day a week with NO uni work (often I had 2), and I didn’t pull a single all-nighter.
And I watched the quality of my uni work improve as a result.
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 think the toughest part, bizarrely has been recovery.
I was better, I am better…but I’m still not totally free of CFS.
I know that if I have a night of disturbed sleep and don’t catch up on it, I’ll come down with a cold or something within days. It’s like my whole body shuts down and starts malfunctioning.
I know that when I’m around kids for prolonged periods of time (like in church and in schools) I very quickly pick up their germs…and the joints start aching, my throat is sore, and I’m falling asleep everywhere (on the bus, at work, at my friend’s house…). And if I do get ill, it takes me longer to shake it off.
It has been tough, and I’m still learning to find a balance with in that. Not to live life in fear of getting ill, not to have a victim mentality…not to let CFS define who I am or stop me being the woman that I was created to be. At the same time I know that prevention is better, and most people will tell you they’d rather make a few sacrifices to prevent getting ill in the first place because you regret it if you don’t.
It’s also important to have understanding, supportive people around you. I’m very lucky to have that especially at work, and 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.
And it’s because of them, that I’m still here…keeping on keeping on, and getting better.