Fatigue Hit Me Like A Bus
It’s been really rough recently. My energy levels have been declining. I tried to ignore it, to not focus on it, to hope that it was just because I was doing too much. But no. My fatigue has been back and it’s made me feel like I’ve been hit by a bus.
Trying to cope with extreme fatigue
The worst part for me was not sleeping for 10 hours every night for a week and still being exhausted by 11 am. It wasn’t feeling my eyeballs for every moment of the day or being aware of every blink I took. It wasn't feeling so heavy, without any motivation and as a result, not getting any of my work done. It wasn't crying on the tube because I just couldn’t cope. Or that it took me half an hour in the evening to talk myself into standing up to going to bed or not wanting to do anything and just feeling. Well, I don’t really have the words to describe what fatigue feels like.
All of those things, I could sort of cope with. What was worse was having to put my ‘please offer me a seat’ and 'Cancer On Board’ badges back on when on the tube. This to me felt like I'd given up. I had given in. I was letting fatigue win. To control me and that f***ed me up beyond belief. It made me so angry and upset. Like I had failed. My body had failed. And I hate that.
I started tweeting about it all. How sh*t I was feeling. That I didn’t want to put my badges on. And as always, my wonderful friend James came to the rescue. Or rather, he came with sensible words that I would have said to him.
Taking charge of my fatigue
I wasn’t giving up or giving in. This was the entire reason that we turned the Cancer On Board badge into a charity. This was the reason the badge was born! It’s for those days when life is just too much and you need a seat. So I shouldn’t feel like I’ve failed for wearing it.
What also got to me was that I had to wear it every day for a week. And then I decided at the end of that week to stop being an idiot. To email my consultant and tell her how I was feeling. To truly admit to myself that it was the drugs and after an amazing 8 months (ish) I think, that the proper fatigue was back. And this was also very upsetting. The drug that had been so magical was, in fact, like all the others. And because she is amazing and naughty, she emailed me back even though it was a Sunday evening, and told me to reduce the dose down and see how that goes. And you know what? Within a few days, I felt better again! The debilitating fatigue has lifted! And the badges are off again, always with me in case I need them, but not on.
I hope that this isn’t a stopgap of time before the side effects build-up and the fatigue comes back. I hope that the dose I’m on now continues to be good because as far as I know, I can’t drop it down anymore!
So as always, I hope...
How long did it take to be properly diagnosed?