Fatigue - The Invisible Side Effect
Fatigue is sadly something that is often with me. It comes and goes. I don’t know when it will really hit me. I’ve had such a bad time with it that I have been on every treatment available for chronic myeloid leukaemia to try and find one that doesn’t destroy me so much. It got so bad that I was offered a stem cell transplant for quality of life reasons. And then I was able to access a trial drug with compassionate use as I can’t tolerate the standard dose, so can’t be in a trail, and it was magical! I felt like me again. I had my energy levels back.
Fast forward a year and a half
My energy is crashing again. This happens when I switch drugs. The impact is accumulative, I never know how long it will take. With this drug though, I’ve had the longest space of time feeling ok with my energy. And it was beginning to get really challenging again and then I was told that if I keep my results, which have been consistently really good, until November, I can come off treatment! So I am keeping going. Even though it’s 6:30 pm and I had 10 hours of sleep last night and I’m exhausted, and I’m really struggling with focus at the moment because I’m tired all the time. I’m going to put up with it.
I’m 35 and I’ve basically spent the last 11 years exhausted and unable to live my life properly. I’ve needed between 10 and 12 hours of sleep every night just to get through the next day, well to the next afternoon. I can’t stand up for long periods of time. I worry in social situations about if there will be somewhere that I can sit. Everything takes effort because everything is an effort. And I’m finding it hard to remember the year and a bit I’ve had on this new drug feeling good.
Learning to allocate my energy
I have to balance every minute of every day. I have to plan everything. Things coming out of nowhere can really unsettle me as I haven’t planned for it. I haven’t allocated energy to it. I don’t know if I will be able to do that as well as everything else I have in the diary for that day. I’m not very good at last minute things because I need to know what the week is like before it happens. So I know how much, or rather, how little I have to do at the weekend to recover so I can get through the next week.
And people don’t understand why I am like this. They aren’t that forgiving when I question what social plans to find out exactly what time to meet, or where, or how long whatever it is we are doing will last for. What time it will end. What time I might be in bed so I can calculate how many hours sleep I will get and the impact it will have on tomorrow.
In our 3rd Annual Blood Cancer in America survey, over 8 in 10 of respondents reported having experienced fatigue as a symptom of their blood cancer; 93% of those surveyed experienced symptoms in the past month, fatigue being the most common - and this person across the pond gets it. It’s sh*t, I won’t deny that. But I just try and focus on the good days and knowing that when it’s really bad and I’m aware of my eyeballs, can feel every blink, and every cell in my body feels heavy. Tomorrow could be a better day and I just focus on getting into bed at the end of today.
Do you worry about relapse?