I used to run in the wind, splashing through muddy streams, feeling my lungs bite as I grabbed breath after breath. I used to box, and lift weights, and enjoy the burn across my shoulders as I pushed the limits of my muscles. And yes, I even used to be a personal trainer. Keeping fit was my life, my work. I relished being a human. I loved those times, whacked out on endorphins, feeling each fibre twitch, each pump of my heart.
And then everything stopped.
I was diagnosed with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, commonly known as CFS/ME, two years ago. My job as a personal trainer meant that I was teaching fitness classes as well as training before and after work most days. I didn’t have much notice, (although my increasing consumption of ever-more creative concoctions of creatine/caffeine/aminos just to get through a class should have given it away, in hindsight) – one week, I just couldn’t do it any more. It wasn’t a mental feeling of not being able to cope. It was a pure, physical stop. My body physically shut down – and by shut down, I mean I didn’t have the energy to even lift my arm. I came off the rails and crashed.
Turned out I was deficient in Vitamin D (a surprise, being a ginger), but after I’d taken the vitamins, I still felt more fatigued than I’d ever felt before. CFS fatigue isn’t just feeling tired. It’s running daily at 1% battery, trying to muster up the strength to get just one thing done before you run out of juice. It’s sleeping 16 hours and waking up feeling as though you’ve been raving for 3 days straight.
The utter exhaustion is almost indescribable – I can actually feel it in my bones. My teeth are tired. My brain is tired. My muscles are tired. My soul is tired. Breaking down (yet again) at the doctor’s, I couldn’t understand why one minute, I’d been fit as a fiddle – the next, I was struggling to even get downstairs.
I was referred to the CFS/ME clinic at Leeds, and subsequently diagnosed. I didn’t know how to feel – I was in part relieved that I wasn’t going crazy, but frustrated that my condition has no known cause, no cure, and is lifelong. And, pertinently, exacerbated by exercise. I was going to have to get used to a whole new lifestyle. Saying the words: ‘I have CFS/ME’ was so uncomfortable. I kept it quiet, attended my occupational therapy sessions, and tried to just carry on.
Fast forward a few years, and here I am. I am lucky in the fact that I am not severely affected – the #millionsmissing campaign, along with the documentary Unrest, document the experiences of those with severe ME. But I’ve had to process the grief of losing my old lifestyle. Now, a run is out of the question, and a long walk sends me to the sofa for a good few days afterwards. I struggle to lift a bag of spuds. My brain is a constant mush – I can’t think of words for things, I can’t remember my own name, let along where I’m supposed to be and with whom. I hear myself slur my words when I’m really tired. Anxiety, overthinking, and mental illness tire me out just as much as physical activity. It’s a bummer.
Research around CFS/ME is varied. It is possible that CFS and ME are two different conditions. They may be caused by a virus, they may be caused by persistent stress (hello, old job), that sustained fight or flight response, over a long period of time, buggering up the immune system. There may or may not be genetic markers. No one really knows. And that’s the problem.
Continuing research into CFS/ME is so important, not only to help the public understanding of a disease that has in the past been wrongly regarded as that oh-so-helpful phrase ‘all in the mind’; but to give those suffering from it some glimmer of hope. Nowadays, it is known to be a real disease, with biological markers – but we’re still so far away from a full understanding. It’s so frustrating.
Personally, it’s been really hard to accept this condition. I’m incredibly impatient – pacing my activities does not come naturally to me. It’s a condition that’s hard to explain, and so I tend to downplay, or just not mention anything about it. I suck it up when told by family to ‘just SAY WHAT IT’S CALLED’, only to dissolve in angry, frustrated tears later on, because I physically can’t find the word for ‘door’ or ‘chair’ or ‘bookshelf’ and haven’t the energy to explain it. I plan free days before and after meeting people for coffee, to a) build up some energy reserves beforehand and b) recover afterwards. Will I get better? Will I get worse? I just don’t know.
It’s weird talking about CFS. I find myself more comfortable talking about mental health issues than my chronic illness. Some part of me hopes that just by ignoring it, maybe it’ll go away, maybe it’s all a mistake. Other parts of me are slowly beginning to accept it. I hope by talking about it, people begin to become more aware of what is actually involved. It’s not just being tired. Far from it.
I’d like to talk more about living with CFS/ME on the blog in the future, if only for myself – writing about it seems to help! And you can find out more by having a look at the links below. 🙂
Fab CFS/ME Blogs: