Well, I’m shocked that I haven’t written here for two weeks! I have been suffering quite a flare, and for a while wasn’t able to do much at all. In this time, my wheelchair arrived! It has made me a lot more able to get out and about, thank goodness! My lovely twin sister doesn’t mind pushing me, and we’ve had a couple of days in town; I’ve just been glad to see some of the nice weather! It’s a lightweight travel chair, as we were thinking ahead for possible trips–I think I mentioned this already somewhere. I still take my sticks with me on these days out, but having the chair has been great, and means I don’t have to cut days out so short anymore, and so on. It means I can actually go food shopping and not have to leave the supermarket and wait in the car because I’m not able. Yay! I’d definitely struggle on my own with the chair, particularly on kerbs–I notice how few of them are actually flush with the pavement, which is a problem, and hills are just a no-go. However, when I go volunteering and so on, I should manage on my sticks as there’s not much walking about to be done.
I did pop into the shops I volunteer at while we were in town–while they weren’t too happy to see that I’d declined this bit further, they were happy to see me. And in one of my shops, they had done an Easter draw for the volunteers, and for a change, I had some luck and won the vouchers, which contributed toward an electric toothbrush (easier on the arms!). We went for a walk around one of the inches here (basically a big green park), and it was lovely, although a bird did do its business on us!!! Well, I hadn’t laughed like that in a while, anyway! 😛
Today we took the chair again and went to see the Ancient Egypt exhibit in our local museum, as its the last day. As it’s a small town, it’s a small museum, but it’s always nice for a wee visit. Afterwards we popped into my sister’s old work to see her former colleagues and give them a gift, before going off for some coffee while Starbucks is still doing its happy hour! Nothing too special, but oh, it’s a good feeling to just get out and do these days and not have to labor over every step. Getting on and off the bus with the chair was easier than expected too, so thankfully my twin won’t have to push me all the way into town every time.
It’s just a relief that although my health gets worse, there are aids that help and make it easier. There’s a big mental block when you decline to a new level, I think–I remember how awkward it was for me going from using walking sticks just occasionally to needing them pretty much permanently. Now I’m using the chair occasionally, but we’d been talking about buying a lightweight wheelchair for a long time, and my sister had suggested so many times to use the wheelchairs in the supermarket, but for some reason I wouldn’t. I always think I’ve come to terms with my disability, and then I decrease to a new level and have to kind of accept it all over again! My sister found it rather amusing because recently in a TV show where a character was refusing to get out and about in her wheelchair, I was saying “Ach, just use the chair; you’ll get out; it makes life easier; it’s not such a big deal!” And then when it became my turn, I kind of saw the reservation about it, even if it’s fairly irrational. But I feel good about it now–I know which is the better option out of being in denial while refusing to accept the aids I need and admitting to myself that I do need them, I have gotten worse, then accepting all the help I can get to still have some semblance of normality in my life!
One point about using aids that are so much more visible is that my illness is a lot less invisible to my family now, which overall is a good thing, I think, although I do have days where I just want to be “normal” as I’m sure we all do, without having people be able to see our disabilities. But actually, ultimately, it’s a lot easier in so many ways when it does become visible with closer family and friends. Mum has been asking quite a bit about lupus more regularly now, and while I’m sad to have to give bad news in the answers, such as the likelihood of progression rather than getting better, to have them actually interested after so many years makes me feel happy, validated. For so long I went without a diagnosis, yet when I finally got one, I hadn’t felt like they invested much interest in the condition. But things are getting there. 🙂 At least they’re not being nasty about it! (Which I’ve certainly had from family members when I was undiagnosed, and I think they as well as the doctors thought I was rather a hypochondriac.)
As I think I mentioned a while ago, I’m planning on going back to university to do my Masters in biomedical science. I have to talk with the bank about certain loans, and have to work out somewhere to stay that’s fairly affordable and close to the uni, but I’m applying for a 2015 start so there’s still time. As much as I still have days where I feel sorry for myself and wonder how far I’d have gotten in a career if I didn’t have lupus, I’ve more or less come to terms with the fact that I can’t be wedded to a hectic career such as forensic pathologist as was my dream, but I can still work within the field and find a job I love. Otherwise, I’m just getting on with hobbies, and need to get back onto writing up my weekly goals here! I hope that I become a lot more productive in general as the nice weather sets in.