Well, I'm Tired... Again
I want to write but I don’t really have the words. I’m tired. Work has gone quiet because of it. Not that I’m worried. Well, a little bit worried. But I’ve just paid this month's rent so that’s good that I managed to do that. And it wasn’t as hard to do as it has been in the past. So that’s good.
When others notice your fatigue
Today, a client asked me if I’m ok because I look tired. Last week, one of my co-working friends asked me if I’m ok because I seemed so tired. So, I suppose in a way it’s nice to know that others are clocking that I’m tired. It’s not just in my head.
It’s interesting...because I’ve been better for so long, my co-working space friend has forgotten that I used to be like this all the time. This was my norm rather than the rarity. I hope that this isn’t my new norm again.
I’ve had shooting pains down my skull again. This isn’t a good sign. It shows how exhausted I am.
So much more is an effort again. I had a busy weekend, which was not quite the weekend of nothing I was hoping it to be. But it’s really taken it out of me. Even though it was 10 days ago. I still haven’t recovered. And this isn’t good.
Getting enough quality sleep with cancer
I need to sleep more. But I have enjoyed being able to do things. I know I need balance but I got so fed up with having to go to bed at 9 or 9:30 in my 30s. I think I’m going to have to start doing this more. Trying to get more sleep. It’s so frustrating.
I filled out a questionnaire for a research study on CML and it asked you to rate symptoms over the last week. I was really shocked to see on paper how bad it’s been. I’m so quick to say I’m fine and everything is ok. The reality is that it isn’t. I really don’t want to be in this place again.
I’m waiting to hear about my last leukaemic rate result. The second result on the lower dose. I hope it’s still ok. I really don’t want to increase my dose.
Dealing with my CML fatigue
I'll be back at the hospital in just over 3 weeks. In a way, it’s good that I can go to this appointment and say definitely that I’m feeling worse. But that’s also not what I want. I had really hoped that this drug was the one I could live my life on. To completely forget about the stem cell transplant option. To not have to make that decision.
This coming Monday is a bank holiday so I’m going home for the weekend. To do nothing. I need it. I haven’t had a proper break in a while. And I really hope that after 3 days of doing very little I will feel better and rested and recharged. That this has just been a blip. That it’s not just going to get worse and worse.
How has blood cancer impacted you financially? (select all that apply)