A few years ago, I came down with a flu-type virus one Christmas. I’d never had anything like it. I felt dreadful for a whole two weeks. Zero energy, a sore throat, coughing, spluttering, nose running, feeling hot then cold… Just dragging myself out of bed was a chore in itself.
The new year didn’t get much better. The flu-type bug gradually disappeared, only to be replaced with recurring sore throats and colds. A lack of energy had set in too. It wasn’t just tiredness, it was something more. By Easter of that year, I’d had enough and took myself off to the doctors.
Several appointments and several rounds of blood tests later, I was diagnosed with Chronic Fatigue Syndrome.
Since, I’ve had numerous blood tests and appointments and I’ve been on a Pain and Fatigue Management Course at the local hospital, but there’s no cure.
As a result, I’ve had to down to just 4 days a week at work. I’m thankful that I work for an understanding company, but I hate that I still need days off from time to time.
Chronic fatigue is not just being tired. It’s a whole new level of tiredness. How would I describe it to someone? The feeling (exhaustion and pain, but not the exhilaration) after running a marathon, the grogginess of coming around after general anesthetic, having flu day after day after day. Do you get the gist?
Energy just disappears. Sometimes just getting out of bed is an event in itself. I’ll fall asleep while reading or watching a film. Going out shopping can take it out of me and have consequences for a day or three afterwards. I used to love going to concerts and queuing up long enough to get to the front by the barrier, but I can’t cope with that now. It’s too painful and I don’t have the energy to stand for that long anymore. If I go to a concert now, I generally need a seat to lean against and sit down on from time to time.
If I am feeling good and go out for the day or go off for the weekend, then I know I’ll feel the effects of it for days afterwards.
There’s the “brain fog” too. Not being able to think properly, forgetting words, using the wrong words, forgetting what I was saying mid-sentence, feeling confused, forgetfulness, difficulty concentrating… Simple things become that bit more difficult. I hate the brain fog, especially when it descends mid-conversation making me look stupid.
Then there are the aches and pains. If I walk too far, I start hobbling and slowing down. Having an OAP overtaking you whilst out shopping or walking can be a bit embarrassing! But then being sat down for most of the day has the same effect, especially at work. So I try to keep moving and finding excuses for not being sat down constantly.
It doesn’t seem to matter if I sleep well at night or not. I still feel more tired in the morning than I did when I went to bed. Sleep is rarely refreshing for someone with Chronic Fatigue.
CFS/ME is very much an “up & down” illness in that some days (or even weeks) are good and some are bad.
I have mild Chronic Fatigue, but I’m well aware there are people who have it much worse than me. Some people who have CFS/ME are bedbound and it frightens the life out of me that things could get that bad.
I’ve recently had another couple of rounds of blood tests, seen a rheumatologist and have been diagnosed with a vitamin D3 deficiency. So it’s an ever-changing situation.
Do you (or someone you) know suffer from a chronic illness?