I've been saying for a while that I planned to write a "what's life really like" type blog post. This isn't intended to be a moan or a woe is me type post... it's just intended to highlight that which I don't often show and what saying "I'm fine" can really mean.
So far today I have
Spasmed and kicked the shower screen as a result knocking it open. But thankfully the shower was facing away from it and I caught it quickly so didn't flood the bathroom. This happens most times I shower and the screens no longer fit together well.
Needed help to put my left shoe on as my spasticity just wouldn't let me get that one on properly although it would let me get the right one on. Worryingly that's getting to be a bit of a situation normal.
discovered that I can't get into the back of my mum's new car. So little leg room and so tight legs that I didn't even try it.
And that my chair (which we had thought would fit easily) needs a wheel taking off and a lot of jiggling to get it in the boot and even then it's a ridiculously tight fit meaning if there's more than just me and mum in there it's not practical.
Wheeled myself around Reading. This involves being dropped off and picked up right outside one of the shops and skipping some of the places I would usually go due to spoons/distance/extra time needed when in the manual. BUT I will say that I definitely think I'm getting a bit fitter.
Asked several complete strangers to open doors for me, fill up a cup with water from the machine, put rubbish in the bin for me etc
Had to get the shop assistants to put things in my rucksack each time I bought something.
Called my mum to ask her to meet me and help me sort out some tops to try on (knew she was in the same shop I was as we'd just been dropped right outside) due to reaching, not being able to see sizes (height again) and carrying them. She came in the changing room with me as she had a top to try on too and that was easier although I could have managed tops without help.
Been very impressed that I didn't have to wait at all for things to be moved out of disabled changing rooms. And then thought about how wrong that is - most people aren't impressed when they can try tops (1 shop) and bras (2 other shops) on with no fuss, it's what they expect!
Queued in one shop to ask for someone to help me reach the bras and find my size. Which meant I had to tell her my size but thankfully I'm not modest about things like that.
Spasmed so hard that my footplate is knocked out of shape and needs adjusting yet again. This seems to happen every couple of weeks. But this is better than when I snapped a bit off in a spasm a couple of weeks ago (same leg, it's always the same leg) and had to have a replacement part fitted. It's no wonder the last time I called the repair guys I said "Hello, can I arrange for my chair to be fixed please?" and they went "is this Emma?" is it?!
Gotten home tired and achy from shopping and needed to rest to recover.
Resorted to painkillers for my sore hip (probably due to spasticity as it's my "good" leg hurting and the theory is it takes more of the strain when I transfer etc) and achy elbow (likely due to the wheeling). They make me feel a little more tired and out of it but I've not taken everything I can so it's better than it might be.
Drank more than I wanted to as I was worrying I'd not had enough today (a frequent occurrence since I had that UTI).
I'm now going to sit outside and read a book for a bit. I'll transfer into my powerchair to do it because I can tilt it right back which is important as otherwise I'd have spent too much time in the one position which is not good considering I'm at risk of pressure sores.
Oh and when I make some dinner in a bit. I plan to make extra and freeze it for a day when I either don't have the energy or the time to make a proper dinner.