Yes, that's how you spell 'deep peed off sigh'…
God it's hard this weird half life. Where everything would be great if I could just feel 'like me' again. But where every day I wake up in pain, turning over gingerly to assess what's hurting, where and why and how much..
I caught a glimpse of myself walking to the bath last night – Christ, what a shocker. Bent forwards, leaning like a bloody gorilla, my knuckles will be dragging on the ground soon at this rate. My lovely friend Mark even noticed as he came with me to the tube after a lunch last week. 'Did you know you're walking incredibly badly?' He said, and he was totally right. At least tomorrow our car is due back from France and I can rescue my back support out of it….
So my current plan is to have 6 facet joint injections and an epidural on the 5th July, which may or may not work as I've had various previous junctions but am hoping that going for 'quantity' plus the epidural will do something to make my back happier. This is with my 'third opinion' back consultant so I'm not sure gong for a fourth would be a good idea, if this doesn't make any positive difference, but we will see.
And on the tiredness front, I continue to be knackered all day. I used to wake up thinking 'what am I going to eat today?' And now I wake up thinking 'when can I get a sleep today?'. Not great to pass out 3 or so times a day as soon as I get on the sofa… I started thyroid tablets today but they can take 2-3 months to make a difference, if that is really even the problem. Have to go for a pituitary gland test as well, in case that is not functioning fully and is making me tired, but that has to be two weeks after steroids, which I had today as it's my monthly joyous chemo day, and Thurs & Fri. So you can see how stuff just drags on and on… I have taken off the pain patch as that risks causing tiredness, so am now seeing the pain chap tomorrow to discuss alternatives as without it my back is definitely more sore….. blah blah blah, the never ending saga. Endless appointments and cock all progress.
And it's almost July, I thought I would be more than up,and running by now, but am stuck in a medical rut and dearly wish I could be released.
It's like jumping through every hoop, being a good dog, wagging your tail eagerly and then not understanding when you get left in a dark place away from everyone else. Just wishing you could be one of the gang but very much being different. And different massively sucks.
Still no idea when I will broach the world of work. H and I are off to Croatia – all being well – a week on Friday, so very much hoping we get away and all goes smoothly. Low expectations indeed, but in our world, no longer things we take for granted. We will see x