I missed the opportunity on Sunday to make new goals, but I do plan to start again next week. Even though I’ve been still working on the things I put in my lists, it feels good to have that extra push. However, today, I went into one of the charity shops I town where I volunteer. I used to do 4 or 5 hours when I managed regularly, but now I have only been a few times this whole year and while I’m easing back into it, I do 3-5. Mum said today, “There’s not much point going in at this time!” But until I get some fitness back up, particularly following this flare, I am mostly sticking to shorter shifts.
I got the bus down, which involves a fair bit of walking; in the last couple of weeks, my few outings have been with the wheelchair, so it was nice, albeit difficult, to get some walking in today; the bus stop directly across from my house used to be the stop that takes you straight into town, but now it’s up a hill across from my house, so it’s not too long but uphill. From town, it’s just a couple of streets to the shop. It did mean I was pretty exhausted and hot by the time I got there in spite of the rain!
It’s always nice to see everyone again. When I started volunteering, it was in part for something to do, but a large part was to boost my social skills. (As I’ve said before, some of my doctors suspect I have Asperger’s or a similar condition, which I agree with, but I don’t have an official diagnosis.) It’s also nice to meet people in my city of all ages, because the only people I really knew upon moving back from Glasgow were people I went to school with who hadn’t also moved away–so basically, I had no friends here!
Alas, barely half an hour in, I managed to somehow cut my finger without noticing, getting blood everywhere, on a t-shirt I was folding for the customer! She was lovely about it, and took it anyway. I had been about to point out a stain I noticed on the shirt when I realized it was dotted all over me and was running from my finger! It’s quite a deep slit–we’re guessing it was on a paper ticket on one of the clothes, but I didn’t feel it at all and still can’t, so it’s no big deal, although it gave my manager the chance to break out the first aid kit and wrap it all up fancily, haha, which was quite a hindrance! I have a basic band-aid on now, and still can’t feel it.
I was talking to one of the women who works in the office there, so I don’t get to see her as often as the workers in the shop. We were talking about how my health is worse and my plans; she says I’m very positive about it, and should look into disability support for other young people. She was very impressed when I told her about this blog, which gives me an outlet and hopefully some support for people reading. Next week the shop is having an activity day out in a nearby town, so she was telling me that they will sort everything out for taking my wheelchair. It’s just a craft fair kind of thing, but these days I jump at these events to get me out of the house!
While I was helping a customer with the radio she bought, she saw my sticks and asked what my disability is. It was in a way nice that she asked this way, acknowledging that just because I’m a young guy doesn’t mean it’s a temporary injury or whatever. She has MS, so we were talking for a while about our conditions. As she left, we both said things like “Hope you improve”, “Hope things get better”, then kind of stopped and reflected that even we say those things, although we know our conditions tend to get worse anyway and it’s almost a platitude to say, haha.
I did manage to come away today without any books!!! (Maybe that’s mostly because I didn’t bring a bag, haha!) I did buy some buttons for my crochet projects though–I was talking about crochet with the manager, and she’s asked me to do some crochet flowers for our spring display, which will be quite nice. We recently won an award for the Best Shop Window in town joint with Oxfam, which is awesome!
I’ve been treating this blog as kind of a general journal in a way–I don’t know if people enjoy this way, but I miss having a Livejournal for these kinds of posts, so this blog is the replacement! I do want to paint a picture of life in general with lupus anyway, so I suppose these posts have their place. But soon I want to start working on posts of individual symptoms and secondary diagnoses so I can link them up to my diagnoses page. I’m going to recruit my sister soon to take some photos to display my hypermobility, so maybe that’s where I’ll start.