Whew, I’m going through quite a flare just now, which is partly why I still haven’t been very active on social networks, etc. Nothing too dramatically new has been going on – in my health nor life in general – but I just wanted to check in here. On Fiverr, I got a fairly long-term transcription order from a client, so I’ve been working on that along with my usual work on languages and translation, etc. One thing I have been neglecting, however, is my language blog (polyglotscot.wordpress.com if anyone is interested) as I do my actual learning on paper or offline on my computer with the translation projects, or practice via websites like Lang-8 or Vocaber; I hope to work on putting up some more articles and vocabulary lists there especially as the blog recently hit 1000 views. Yay!
As I massively overdid things last Wednesday, I took a week or so off from the fitness plan to recover–it wasn’t an intention to stay off for so long, but I simply hadn’t fully recovered by the Wednesday after! Unfortunately, it meant I had saved up quite a lot of errands for the one day which would have probably meant a repeat of massively overdoing; however, I didn’t even have the strength for this, and I only made two stops: the dentist and then just up the road to the library.
Happily I did manage to go grocery shopping; I think I’ve seriously only managed to get to supermarkets fewer than five times in this whole year as it’s just too taxing. So I used a store wheelchair that you can hook the cart onto, and ohhh, it was soooo much easier! We have been considering getting me a wheelchair for a fair amount of time now, especially as my sister and I had planned to go down to England for a short trip and we wanted to ensure I would manage. So today we’ve ordered quite a lightweight travel chair that I can propel myself, and I’m quite excited.
There is a mental block in moving up from unaided walking to sticks to wheelchairs, for sure. I remember how weird I felt when I was only using my sticks for the worst days. There was a kind of self-consciousness if my family saw me. This year I’ve been pretty much using them full-time, so I’m used to the idea, although some days I still think “bloody hell, I’m only 23 and using these full-time, when I was managing a lot better barely two years ago at uni, and things are only likely to get worse as the lupus progresses”. But in general, I have to not dwell on prognoses, the possibility of becoming very seriously ill as things progress, the possibility of dying. I think I’ve found a happy medium of not dwelling so much on these issues yet still acknowledging everything to a certain point, because staying in denial is just as unhelpful. And life has been much easier since being more able to admit when I need help, that I do need the sticks, that I need the wheelchair, etc.
(Incidentally as an aside: my sister handed in an application to the store with mine at the same time, and she got a call for interview barely half an hour later! I haven’t heard back, so I assume nothing’s going to come from it. I will keep looking for low hour part-time positions, and also to get more substantial options for loans etc. for going back to uni.)
I’m hoping things improve soon for me. From using the sticks so much, my upper body joints are very bad just now as well as the lower, and my sinuses are also playing up mightily. I’m getting even more intense headaches when I lie down. I’ve also fallen over more than usual recently. My balance is bad as it is, but the falls are just getting ridiculous! 😛 Yesterday it was quite bad, and one of those times where I’m half down before I even realize it. Luckily at home my sister’s there to try to catch me, haha. My cardiac symptoms are giving me that horrible fatigued feeling of “grayness” again, so I’ll probably be taking it easy for a bit.
I just want to throw in a special thank you to all the followers here. I value each one of you, whether you’re a lupus/chronic illness sufferer here for solidarity and information, or someone here to learn more about lupus in particular or chronic illness and disability in general. I reached 50 followers recently, which is just mindblowing to me! I know I often write a lot of crap, haha, and I still haven’t written the posts for my symptoms page to talk about each in more detail. At least with the goals pages, I know I’ll get on at least once a week and update in general! 🙂 I just value this space so much for myself as a space where I can write this stuff in detail, and not worry any more about whether people think it’s “bragging” or something. While I haven’t explicitly shared it on my FB – mainly because I have more vague acquaintances on there who don’t exactly need to know every little detail; it’s nice to preserve some semblance of normalcy, haha – I do share it frequently on Twitter, because I think it’s important for people to know just what we got through with extensive systemic diseases, with treatment from other people based on disability, the struggles that we go through related to chronic illness and disability but not a direct symptom of it, such as how we cope with it, how we relate to family and friends over it, etc. Thank you for reading!