Fairly bad day today, with extra salt for wounds.
Mum had wanted me to go to her house so that I could supervise her decorating. That sounds kind of daft, but the thing is she's not in the best of health herself, so we have this agreement whereby she doesn't go up ladders and so on if she's alone in the house. The days are gone where I can go up the ladder on her behalf, but at the very least I can be in the room, pass her things, help or call for help if some sort of accident should happen, and indeed be a little bit of company... it's a little bit of usefulness I've still got.
Except on days like today where I was audibly yelping as I tried to move first thing in the morning. I had to phone and let mum know I couldn't get out of the flat, and doing that always feels like such an admission of failure.
A full burst of painkillers and some meditation let me get into a hot bath for a soak. I'm lucky that my bathtub at home has grab rails on the side, so most days, with a bit of effort, I can get in and out of it unaided. That said I have given myself some nasty scrapes and bruises doing this, and even knocked myself out a couple of times, so I always have my mobile phone on the bathroom floor in case I end up having to call for help. Showers are beyond my capability, I can't stand up for that long.
(By the way, please excuse the detail I go into about my day-to-day lifestyle and difficulties in these early postings. I'm trying to lay the foundations, if you see what I mean.)
Wrapped up in a towel, I needed a sleep to recover from the exertions of having the bath, but by 2pm I was air-dried and feeling mobile enough to shuffle over to mums, where I got my cup of tea and mumsykins made her way up the ladder to start removing curtains with an air almost of joy. And all was okay with the world for about ten minutes.
Then my sister phoned.
She'd finished her shift at work and was going to spend the lovely summer afternoon in town with her best friend, my best friend, and their respective babies.
Now please don't misunderstand me. On a day like this, if I'd finished work at 2pm, I would want to enjoy the weather with friends. I'm pleased for my sister that she can do this. Just like I'm pleased for her that she can have a job, earn her own money, dance, go out every night, learn to drive, all the things normal girls our age do. This is not me having a problem with *her*.
However, no matter how noble I try to be, there is a bit of me kicking and screaming and shouting "It's not fair! What about me?! Why are you always doing things without me?! Why do I always have to be left out?! I want to be part of the group! I want to enjoy friends and sunshine! Where did my life go?!" Sometimes I'm a smidgen from vocalising it, except it would upset her no end and that's the last thing I want to do.
I made some jokes about how both her friends had dependents to push and now I had my own wheelchair, if she felt left out she could borrow me, we could get me a dummy but I wasn't wearing a nappy for anyone, etc etc etc blah blah blah... got off the phone and burst into tears.
They don't mean to reject me, but they do, again and again. And these are the people who still find time for me now and then - there are many people who I have tried to keep in phone and email contact with who know where I live and keep saying they will come round some time, but haven't, not since I got ill.
Mum understands, I think, for a lot of it. Her own health problems mean she can relate to a lot of the disability issues. But even for her, she went to university, she drove all round various parts of Europe in her little VW Beetle, she worked, she got married and had kids, before things really impacted on her lifestyle. I've yet to find someone who can relate to the exact nature of suddenly getting an unexpected long-term illness that utterly turns your life upside down when you're only just turning 23. One minute, life ahead of you. The next...?
So this afternoon, while my sister and my best friend hung out together in the sunshine, I walked slowly and painfully from my mums house to my flat, stopping at the chemist to pick up another carrier bag of prescription painkillers, and now I'm alone, in bed, as usual.
NICE PEOPLE TODAY:
- The man in the Capps Food van who was stuck in traffic and smiled at me as I walked past.