The enduring legacy of my CLL is that my immune system was shot to pieces. it's over three years since my last bout of chemo now and I would have hoped that I'd be getting back to normal (whatever that is).
Alas, it seems that I succumb to every little sniffle going around . I had the flu jab last autumn and so I haven't gone down with flu, but when I get a cold of cough, it's as if I had flu.
I'm able to manage my health by taking it easy as much as possible, but there are time when I get tired or stressed and that's when I get hit. My Crohn's kicks in, and although it's not as bad as ulcerative colitis, the stomach pains and flatulence keep me on my toes. I can't stray far from a WC- just in case it's more than wind.
I don't know if you've heard about Spoon Theory but here's a link
Some days I don't have enough spoons to get out of bed. That's today. I know exactly what brought it on and I'm doing all I can to manage it. You see, since I had the all clear I've been making up lost time by recording albums of my songs. One album in the future may be released posthumously- but hopefully not for a while yet. This week I've been playing some local shows and going on local radio to promote my album "Hard Times" and it's amazing how just sing and talking takes it out of me.
On Saturday we went to Corby and we were interviewed and we played three songs. By the time I got back I was out of spoons. On Sunday I rested all day ready for our feature set at a pub in Moulton. We went down really well, but today- yes you guessed, I'm totally wiped out. I've been in bed sleeping most of the day. I'm going to have to do the same again tomorrow ready for another show on Wednesday (assuming I still have a voice, because this head cold is a killer)
Then the same on Thursday before a trip over to Cambridge to play a couple of songs at the Folk Club. I have another day to rest up on Saturday before rounding off this week of playing with a show in Corby on Sunday night.
A few short years ago I would have laughed at this schedule. Before I was diagnosed we were driving hundreds of miles to perform all over the UK. Alas, those day have gone.
So, what do we do? Sit and mope about all the things we can't do? Or just rejoice that you're still breathing and doing a little- even if you wish you could do more?
If you're interested, here's a link to where you can hear some of my songs and watch some videos.
God bless you