It's a funny thing. And a topic that I write about from time to time. It's always there, following me around like a shadow.
There have been a few conversations in person recently that have made me think about writing about fatigue again. Just because I remember what I've written about in the past and the words and emotions used, doesn't mean that others do.
This isn't going to be a whinge or a rant. More of a reflection I suppose as I was talking about this at Bloodwise last week, and it’s been quietly circulating in the back of my head since. So I’m doing what I do. I write about it and put it on the internet. I'm not upset or angry (anymore) about comments made in passing. So much of it is said without a thought of the impact. Because normally I don't react in the moment how I want to. Because it wouldn't be nice for the person.
I was saying to someone recently, I can’t remember when, a week or two ago, about how I have to have, ideally, 10-12 hours’ sleep and go start going to bed around 9pm. Their reaction – ‘lucky you! I'd love to have that much sleep.’ No. Not really. It's hugely restricting on my life. I don't see friends because I have to go to bed. I can either do work in the day so I can pay bills or socialise. I am constantly walking a very fine line between exhausted and able to get up and do what I need to do that day, and to not be able to.
Because I look fine, people don't realise the impact fatigue has on me. And the emotions I feel towards it because I only have it as it's a side effect of the chemo that I take. It's why I'm so desperate to come off treatment. If I was cancer and chemo free, I would be fatigue free.
Fatigue is such a hard thing to explain. People try to sympathise and say I know how you feel. No one does really. Unless they also have it. The heaviness of your head and body. The scratchy eyes. The way you feel like you've been punched in the face. Or at least. How I imagine it to be; I've never actually been punched in the face. The way you have to mentally psyche yourself up to stand up. Get out of bed. Do whatever you need to do. Mentally coach yourself through the day. You can do this. You can do this. Just one more hour. Just 5 more minutes. Nearly home time. One more email. One more research paper. One more task to do. One more cup of coffee. A little bit of chocolate. Another mug of coffee. This is, more often than not, what's going through my head.
I try not to think too much about how I will actually find the energy to do what I need to do. The moment I do that. It's too overwhelming. It's too much. I can't do it. I hate my life. The life that has been given to me. The loss of what I used to have. The fact that I'm so f***g restricted every day.
And I cry.
And I smile when people ask me how I am and say. 'I'm ok thank you'.
I'm not really. But no one would talk to me if I said how I actually felt when they asked me.