Happy birthday to me!

My followers might be glad to hear that one of my New Year’s Resolutions is to actually post here more frequently! I keep thinking something in my head is not worthy of a blog post, and then end up writing so much on Twitter, which can come out quite clumsy! But I need to remind myself that there isn’t really such a thing as a post that’s too small. 🙂

I have a few ideas for posts, but just now I just want to make a general update, as usual. Unfortunately, I think I’m on the brink of a lupus flare; certainly things have been particularly bad over the last few days, I’ve been more or less bed-bound and I’ve been out of the house only once since Christmas Eve, which was to go food shopping when I should have been in bed! As my chronically ill fellows will know, it’s not always the easiest thing to have regular showers and keep on top of hygiene when you’re feeling rough, and last night I’d been in the same pajamas since Christmas Eve. I did bring new pajamas down to use my last spoons for an overdue shower, but chose to go food shopping instead, because if this does turn out to be a full-on flare, I won’t be able to do either! As I Tweeted, I was dirty but at least I had food! Choices like this are a frequent thing for lupies or anyone with chronic illness, really. We have to pick and choose what we can manage, and often I have to “sacrifice” body parts for the sake of others, e.g. injuring my shoulder more using the manual wheelchair to give my poor hips a break. I’m quite envious of those lupies who get remission periods, but unfortunately I’m not one of them!

I’m still volunteering in the charity shops, but it’s getting difficult. I often think “It’ll be fine; you can sit down at the till all day”, forgetting just how strenuous it is to fold and pack people’s purchases. The staff are absolutely fantastic and give me as many breaks as I need, but still. It’s also tough with Sjögren’s syndrome to interact with customers all day. I’m tired of gum, but water on its own isn’t enough! In the New Year, I’m taking a few weeks’ break from the shops, which will be unavoidable if this does become a full flare.

Thankfully, I’m doing really well in the admin officer job for RNIB (Royal National Institute for Blind People); however, I do have to commute 20 miles to the next city, and as I’m on my own, it’s a hard choice between propelling myself in the manual chair or taking my sticks. Also, the hospital link bus that I was taking has been canceled and replaced by a coach service very inconvenient for the disabled and the elderly, who comprise most of the passengers of the link bus. But that’s another post altogether, which I will hopefully write in the next week or so. But the work really is a lot easier for me, being computer-based, and the women I work with are so lovely. I also enjoy meeting the patients. I’ll be keeping this up while I take a break from the shops, health permitting! It’s easy enough for them to replace me on the till, but I’m the only admin assistant!

CN: mental illness, self-harm
Mentally, I’m not sure how I’m doing. Well at this current moment, but I’ve been a bit all over the place the last few weeks. I relapsed a few times with self-harming, and I don’t know if I’ve worked it out of my system again or if it’ll be another full blown relapse. I’ve been finding things easier to cope with because I have a great support system in many of my Twitter friends and my twin has been amazing as usual. I’ve been having anxiety about a few things, mainly PIP, getting the money for my motorized chair, and sorting out uni. I’m not usually anxious but recently I almost went into full panic that none of this was going to work out. It was a strange time for me. I’m just taking each day as it comes, to be honest, and not guilting myself over the self-harm.
END: mental illness, self-harm

I don’t think there’s much else to tell. Today’s my 24th birthday, but I’ve never really enjoyed New Year’s Eve! I’m mainly teetotal and only usually have a few drinks at this time of year. I’ve a bottle of rosé from Christmas and a red wine, and I’ll probably have most of that left tomorrow! I hate parties and get nervous around drunk people. I think my little sister wants to swap birthdays with me! Thankfully, I usually just do a family thing with my parents and the grandkids, on the computer, reading, writing, the usual, with some food. For New Year’s Resolutions, I mainly just want to organize my life a lot more, my bedroom, my inbox, my files and folders, and make sure I do some hobbies more often, such as art, playing keyboard, as health permits. Silly me is also planning to add new languages to my studies!

That’s about it; I’ve had to take so many breaks typing this post as my arms are not having it! I see my rheumatologist next month and will hopefully go another step toward sorting my sinuses. I hope everyone who celebrates had a great Christmas, happy holidays to all, and a Happy New Year! See you in 2015. x

Apologies for lack of updates!

Hi, everyone! I’m just popping on to apologize for the lack of posts recently. I’ve often had moments of thinking I’ll get on and update but it’s hard to find the spoons for it with everyday life going on too! As my worst episodes of mental health usually occur around the bad weather, generally somewhere from October to March, I’ve been trying to keep busy for the sake of mental health, but because of that I’m overdoing things physically quite a lot! The positive is that I’ve finished 90% of my Christmas shopping and can get the last few bits online, so that’s a massive relief. This is my first winter with the wheelchair and I’m in it more or less full time if someone can be with me the whole day out, so I’m dreading any crowds, snow or ice! Thankfully I’m fundraising for a motorized one so that I can attend uni again and just gain a lot of independence in general. It certainly doesn’t help my mental health to be stuck in the house but physically I have no choice! I’ll post a more thorough update hopefully soon, but right now I just want to go into hibernation, haha! I plan to not leave the house until at least Wednesday for volunteering again! If anyone wants to check out the fundraiser just now, it’s at http://www.youcaring.com/lupuswarrior I know not many have money, especially around the holiday season, so any shares would be thoroughly appreciated! I’m hopefully going to get going on crocheting again soon, as my arms allow, to sell some items locally to raise money. Fingers crossed, eh? 🙂 I hope everyone’s doing as well as can be, and I hope to pop in soon with a more thorough update.