Chronic Fatigue – My Invisible "Friend"
I have someone, or rather something, with me at all times. It’s there when I wake up and when I lie in bed gearing up to get up. It’s there when I make my breakfast, check emails, and get ready for the day. It’s there when I’m working. Seeing friends. Seeing family. It’s there when I go to bed. It’s there every day. No holidays or time off for this "friend" that is with me constantly.
"I never feel like me."
I think I’ve been tired since my diagnosis, well actually, definitely since a week before my diagnosis. Maybe longer than that. I can’t remember. Memory is a funny thing. Things blur and change with time. Things are forgotten so you keep going. I know that for the last 11 years, and definitely the last 8 years, I have been tired. I never feel like me. Actually, that’s not true. On the rare occasion I am given a treatment break, 10 days after stopping the oral chemotherapy that keeps my body in remission from CML, I feel like the true me again. The longest I have been allowed off treatment was 6 weeks before my leukaemic rate shot up enough for my consultant to get twitchy and I had to start treatment again.
I’m 33 and I need between 10 and 12 hours of sleep to function the next day. That’s the day. Not day and evening. I rarely see friends, as I can’t work and see them. So work takes the priority. I can’t exercise, as I can only do that or work. I miss running. I can’t stand up for more than about half an hour before I have to sit down. I can walk, but the longer I walk, the slower I get. My parents who are in their 60s are faster than me.
"...if I said how I really felt, I wouldn't see anyone."
But when people ask how I am, I smile and say "ok." Ok isn’t ok, but if I said how I really felt, I wouldn’t see anyone. They wouldn’t want to be with me. And when I’m told by friends and colleagues that they feel tired... well, in all honesty, I want to punch them in the face. But I smile and say very little. They don’t know what tired is. They don’t know what it’s like to be out, phoning home when standing in the middle of London and crying down the phone because you don’t know how you will find the energy to walk to the tube. They don’t know what it’s like to have to mentally beat yourself up into getting out of bed every day. They don’t know what it’s like to have your eyes burning most of the time because you are exhausted. Or to have shooting pains down your skull. Or legs that hurt with fatigue. Or to wonder how the hell you are going to get your work done because you just can’t concentrate and all you want to do is cry.
I refuse to be an ill person. I am my own worst enemy. I make myself do things. And I suffer for it. But what is life if you don’t have one? Well, I don’t really. Chronic fatigue leaches it from me. But, I do what I can. And hope that one day I will be rid of this ‘friend’.
Have you met another blood cancer patient?