Weird Times

I’m having a bit of a weird time of it just now. I feel really exhausted. I slept 12 hours last night and still wanted to nod off when I was having my ECP. It’s so challenging to have a tiredness that resting doesn’t improve but that you also can’t shake off. When other people say to me “ooh I’m so tired” I just nod and smile and think if only you knew what this invasive exhaustion was like. Never mind. Worse things happen at sea!

Despite my exhaustion and aches and pains the high dose steroids are helping in some respects. I don’t have that awful stomach pain. Just the occasional dull ache which is nothing compared to how it was. Let’s hope that as I ween off the steroids that the pain stays away. It’s also nice to have an appetite. Not something that happens to me often.

The other thing that is getting to me is the weakness in my legs. I’m really struggling now to get up my flight of stairs. I’m having to haul myself up on the banister. I also get really out of breath. I find myself sighing often and taking long deep breaths. It’s weird. As a chorister, I’ve noticed my breath control is poor and I’m not getting to the end of the line. I’m utterly convinced a 95 year old has run off with my body and is having a great time. The only problem is she has left me with her dilapidated body to make the most of.  I shouldn’t complain. At least I’m still breathing.

My full blood count is pretty good just now. This is also weird as last month it looked like my transplant had failed and there was talk of me needing a second transplant. I like to keep everyone guessing. Whats causing me grief is my U&Es and electrolytes. It seems my kidneys are not happy and need an eye kept on them. The other thing I’ve noticed is my blood sugar level is a bit high. Maybe it’s my lunch. Will see what it is tomorrow morning. It’s currently 11.7. The last thing I need is diabetes on top of everything else. Let’s hope it’s just a blip.

For now I’m gonna pretend everything is fine and dandy. Whatever will be, will be.

Have a good weekend one and all wherever you are at. I encourage you all in the philosophy of preparing for the worst, hoping for the best and living in whatever the reality is. I’m especially holding in the light Nick and Marley and all those who watch and wait.