I think that the title of this post really sums up the argument that I have with myself on a regular basis, living with myeloma. It would be interesting to know if it is how other people feel too. I sort of imagine it is especially the case for those like me, who are living in a temporary remission.
After I got told that I was in a very good partial remission, we started to rebuild the life that we had sort of put on hold for a while. As I got stronger, post Stem-cell transplant, I started to do things again. I could go out of an evening without it exhausting me, I could go for walks with the kids. Eventually, and still today, I felt normal. I look normal. Everyone else thinks things are normal. And to a large degree everyone is right. I always say to people that I think I’m now at about 95% of where I was before I got ill and started on chemo etc. But there is a 5% of me that can’t quite achieve what I used to achieve. 5% that gets totally frustrated that my husband has to look out for me and remind that I have my limitations. 5% that wishes that when I could for a night out, that it wouldn’t knock me for 6 for the next 3 days. 5% that has to remind myself that I’m still taking maintenance chemotherapy to keep me in remission and that these little while tablets must have some impact on my body.
As everyone reading my blog is aware (and if not, I can’t believe you’ve escaped!), I am trying to take on 40 Challenges before my 40th birthday in January. I’m currently 21 down, but still have 19 to go. One of those challenges, No 5. is to Run 40km in 4 days. Now I’d kept it a little vague but had desperately hoped to run the 40km in 4 days on the trot. That was me hoping to prove that I was living in normality. That I could train like anyone else can train for this sort of thing. But the reality of it, is that it is killing me (not literally) trying to achieve it. I can run 10km at a go, and I’m going to try to run that two days on the bounce. But I know that at the end of that, my body is crying out for a rest. And that if I don’t listen when it says that to me, that I then get ill. And when I’m ill, whilst I suffer, so do my poor kids and Nick. There is also that slightly worrying fact, that if I make myself too ill, I could relapse earlier than I might do otherwise. Hmmmm
I hope that those people who have been sponsoring and supporting me will support this decision. That I will try to run 40km in the shortest period that I can do it…..whilst keeping myself well. I wanted to push myself and I am most definitely doing that. And whilst I don’t love running (in fact I probably have a bit of a LOVE/ HATE relationship with it!), I think I have now got to a stage with it that I wouldn’t give it up. It keeps me fit, gives me some space from everything else I do, and most importantly, allows me to keep eating those crisps and drinking that wine ;-).
There is one other challenge that I have also decided to leave behind me, at the request of family. That is Challenge 31 – To stay awake for 40 hours. I may add it back in if I have no choice, but it is another one where a number of people have told me how worried they are that it could make me ill. And I have to listen to those people, because they are the ones who support me when things go wrong, when I need support with the kids and house. It isn’t fair to make myself ill through the inability to differentiate between normality and reality. So I’m trying to be realistic about the level of normality that I have…and to be pleased too….it is so much more than many of my myeloma friends have, and for that, I am very lucky.
If you would like to sponsor me with my #40ChallengesB440, please either
text ‘DEBG99 £X’ to 70070
e.g ‘DEBG99 £40′ if you want to donate £40