A friend contacted me recently asking me about Chronic Fatigue Syndrome. It isn’t something I talk about so much anymore, and it got me thinking. Do I still have CFS? What does it mean for my life now?
Part of the problem is, I don’t think many doctors know how to help patients with CFS other than diagnose them. I loved my GP in Aberdeen. After GPs diagnosing me with everything from arthritis to PMS to asthma and none of it working, it was a relief to finally have a label for this thing that made me full of energy one day and waking up paralysed the next. However diagnosis was the only thing they gave me – they just kinda shrugged their shoulders at me when I asked what to do about it!
What it seemed to mean was that I became unreliable, because I never knew when it would suddenly rear its ugly head and stop me living my life on a particularly day (or few). It seemed to mean that all of a sudden I caught every snotty cold under the sun. By 2007, I learned that working full-time was not something I was able to do for extended periods of time. What I’ve tried to do over the last few years is manage my time better, and build up my stamina in the hope that one day I’ll be able to have a normal life with a full-time job and live in my own home again.
Something I’m struggling with now, is the discovery that I’m not a part-time student. I’m a full-time student but only for half the year. And that’s not quite the same thing.
I do a lot of things with my life. I work. I volunteer with Girlguiding. I’m involved with Soul Surfers. I’m blessed with lots of friends.
But all of those things were part-time. It did mean there were occasional mental weeks (which usually involved me having a good week to recover afterward). But usually I had days in between to recover. The flexibility of my job for the last 6 years has meant that I’ve been able to switch around my days accordingly. I would have my ‘manic monday’ but it usually meant I’d be off on Tuesday, giving me time to sleep in, catch up on housework and so on. Then I’d be ready for working on Wednesday and Thursday. On Friday I’d do guiding admin or my counselling course or catch up with a friend or other work.
I am beginning to realise that the battle is beginning as I try to work out this new life. For the first three weeks I’ve gone to work, guides and uni…and nothing else. In fact the first week, I had a lot of takeaway meals because I didn’t get to the supermarket and had no energy to do that, cook and eat. One day I did organise to meet up with friends and they turned up 30 minutes late. I won’t lie – I had some ungracious thoughts because I was so tired and it had been so much effort to do that.
Last Tuesday, I had a migraine when I came home from uni.
This Tuesday, I came home with a very upset stomach when I came home from uni.
A lot of that, I think, is tiredness and having to fight through on university days. Not having a day to recover before going into work makes it tougher. This morning, it took me 2 hours before I could get out of bed. I kept having to sit down and take a rest as I got dressed, showered etc.
Many of my friends have young children, and I know they get very sleep deprived, so I feel very guilty if I complain a about not getting enough sleep. Sleep deprivation for me though, usually means I’ll get sick very quickly.
For example, in South Africa, I didn’t get enough sleep the whole time we were there. We got to bed around midnight, and were up about 6 hours later. Every second day I was running to and from the bathroom. Part of this was eating the beta-carotene dyed food, but it was also likely due to not having enough rest.
When I was in Cornwall for the CS UK gathering, I came down with a cold within a couple of days of arriving home.
For me, I have short bursts of energy. I usually can’t spend more than a couple of hours walking around before I feel like I need a wee nap or stop being able to properly engage in conversation. My friends who have been to London with me, will notice that we’ll do something for a few hours and then I’ll suddenly start sitting down at every opportunity. I often struggle at work or uni staying awake, because my body just wants a nap by about 2 p.m.!
I’m now try to work out how to manage things in this new era. Do I try to read on the train because it’s a good opportunity, or do I use that time to nap so perhaps I’ll not feel so unwell when I get home? Do I continue trying to get to Soul Surfers when in reality, I haven’t made a single week from feeling so unwell by the time it gets to about 7.30 p.m. on a Tuesday night? How much do I try to study when I’m feeling so exhausted? And should I have put this down as some kind of ‘disability’ when I enrolled at university?
These are all questions that I cannot yet answer – because I simply do not know.