When will my new 2015 life finally arrive?

(TW: self-harm detail)
Oh, readers. I’ve been a bit all over the place still. I can barely remember what I’ve mentioned here and what I haven’t. Thankfully most of my wounds have healed nicely and there are only a few bad ones–actually, the problem with me healing nicely is that I become very disappointed. I get a perverse sense of satisfaction and achievement out of more serious wounds and the scars they leave; then it means later I swing wildly between hating my scars and wishing they were gone and no one would see them to me being disappointed they’re not as bad as they could be… I still don’t know where I am with it all. The last time was quite bad and had me on my hands and knees cleaning blood in the middle of the night in the middle of a lupus flare. I get very dissociated when the harming gets that bad, and so my personal Twitter account is full of fairly incoherent tweets about it. It’s very odd to look back over it when I’m later lucid and see just how “out of it” I was. It was a good thing about my Livejournal account too that I could look back and keep track, although I get very ashamed for writing such things in such states where people can see. But I guess that’s why I have the blog, for the catharsis.
(End TW: self-harm)

So, yes, this is my first proper post of the year. The title is pretty facetious; I’m not one of those people who seem to believe that somehow the change of an arbitrary calendar system is going to sort out my problems, but part of me does find motivation in there to kick myself up the butt and sort stuff out. But juggling physical and mental illnesses together makes it a million times more difficult. Often I seem to find I have the mental motivation but can’t manage physically, or less often the physical energy but no mental motivation. And often I have neither. What ends up happening is that I let my impulses take over and then do something very taxing such as tidy up the room and then have to pay for it for days after. But sometimes something snaps in me and I just have to get something like that done. Once I rearranged the furniture in my room and ohhh, was I in pain for a very long time after that.

Very conscious of appearing hypochondriac, I wonder if there’s an element of hypomania to my depression. It’s often hard for me to tell what’s a welcome reprieve from depression and a “good day/week/etc.” or something more. I know with the Asperger’s, I can tend to very much focus on tasks and find myself going “overboard” with tasks, accomplishing things very quickly without mental fatigue, but when it’s also accompanied by only needing 3 or 4 hours of sleep (when I’m often in bed for 12+), I do wonder. But to be honest, I think this is probably just me having a good day?

And to continue the hypochondria theme… Lupus has been taking a relatively minor pop at my kidneys for a while now. The rheumatologist is keeping an eye on things for now. The levels of protein in my urine have been somewhat on the border of concern, but nothing too dramatic just now that we’ve found. But I’ve been having so much trouble over the last months with urinating; usually I feel a very strong urge to go but when I try nothing comes for a long time. It’s like I can feel the urine edging very slowly through me until it finally reaches the outside world. Often as well I find I can only push for short bursts instead of a steady stream. Anyway, the point of this preamble was that I was reading about azotemia (nitrogenous waste products building up in the blood due to kidney malfunction) and saw something about asterixia. Now I wonder greatly if this is what’s up with my wrists! It’s called a “flapping tremor” and happens when you extend the wrists back. I’ll have to take a video of mine to see what people think. Unfortunately I missed my rheumy appointment last month (I thought it was in January!) so I won’t see her now until May. 😦 I think I’ll probably see the GP in the meantime and get my bloods updated. I’m not too worried about any of it, to be honest. My twin sister knows that renal involvement is fairly common in lupus patients and she’s preparing herself to give me a kidney in case mine fail! (Jumping the gun a bit, haha. I can’t focus on these prognoses myself; I’ll cross those bridges if I come to them. But she’s understandably worried when reading about the prognosis and stats, and she’s quite shocked at how striking the tremor in my wrists is. So if anything I’ll get the bloods updated for her sake as well as, you know, being proactive in my own health…!)

Actually, I tend to be somewhat cavalier about my health. I am notorious for downplaying things and keeping quiet about things, which was part of my motivation for getting a space where I can actually talk about these things! But after it took me so many years to get the lupus diagnosis and being fobbed off by so many doctors has made me feel paranoid about my own concerns. It’s hard for me to find that balance of feeling validated by my concerns about my own body, especially considering every time I’ve approached my doctors with a specific concern, I’ve been right. But this is what insensitive doctors over the years can do to you, I guess.

Unfortunately it’s getting even harder for me to get out the house and do things. With my shoulder getting even worse, often neither sticks nor self-propelling the manual chair is an option for me. Thankfully I mostly have a family member to help as I’m rarely out more than once or twice a week, but for my volunteering which I commute to the next city for, it’s very difficult as I’m on my own. I keep saying how much easier it would be if only my lower half were affected and I could simply bulk up my arms and propel away! I’m so grateful I’ve reached about £600 in my fundraiser though; also, Nina, whom I work with, has offered to give me whatever money she gets back from her company expenses, which has absolutely floored me with her generosity. Lucy, the assistant manager of one of my charity shops, has offered to bake cakes, as I’m hoping to get up some wee local things. If I don’t have the money by September when uni starts, I don’t know what I’ll do. But again, I’ll cross that bridge if/when it comes.

I have a list of posts to write for this blog, and come Sunday, I’m going to start my little weekly goals again, even if it’s only three. It’s not so important to me whether I actually get them all done or not, but it’s good for a general motivator. Happily, my sister and mum did a massive tidy up of the bedroom my twin and I share; I’m so grateful. This means that next month when my sister has time off work, we can work on organizing our things. We don’t have too many things each, but two adults in one bedroom is not exactly convenient for space! I would certainly like to get my desk space set up again and have a place to work on painting. Right now, I’m off to work on Spanish translation, so at least that’s productive! (Also, I’m strongly fighting the temptation to add new languages to my studies, although I already have 11. :/)

Fundraiser for my motorized wheelchair

Hi, everyone. I’ve mentioned my fundraiser before, but I thought I would give it its own post. I will say straight out that I’m aware many of us are pretty broke! I understand not many people have money to give, and I emphasize that this isn’t about pressuring any of my readers to fork out. I truly appreciate any shares. You can find the fundraiser here: http://www.youcaring.com/lupuswarrior I tried to put a widget on here a few weeks ago but it wasn’t working with the plugins and what not (maybe because I don’t have a paid account) and I thought a link is just as effective, right?!

The issues are summed up on the donation page, and most of you will know the case anyway. I currently use sticks and a manual wheelchair for mobility. Because my disease affects up upper body too, this is very hard on my upper joints. The wheelchair is great for giving my hips a break from the sticks, but unfortunately I’m severely injuring my shoulders and clavicular joints by propelling myself in the chair. If there’s no one to push me, and I’m unable to propel myself or use the sticks, then of course I’m house-bound. I plan to return to university this year to do my Masters in biomedical science. It’s been a few years now since I graduated in my anatomy degree, and unfortunately my mobility is much more limited now than it was then. As I’d be commuting about 50 miles, I will really struggle in the manual, which I can barely manage outdoors anyway; I’ve frequently been stuck, and have lost control on hills and gone out onto roads, luckily without accident. Although there are people in the disability service to give help, I will need help in general commuting and also out of hours, not to mention a life outside of uni, and a motorized wheelchair would give me so much independence back.

Please consider sharing the link to my fundraiser with your friends and family. Even if they don’t have pennies to spare, which I understand, they may pass it on to someone who does. I’m aware my chronically ill fellows are likely in similar positions with needing to raise money, and if you would like to send me your fundraisers, I am happy to share them in a master post and on my social media.

Happy Easter — general update

As I mentioned in the goal review, I’ve been more or less not in too social a mood! 🙂 I haven’t really been checking FB, Twitter, or anything like that. I fairly regularly get to a point like this where even socializing online feels too much for me for a while. I’ve been spending my time mostly reading and working on languages. I’ve been happy to get out when I can, but using my sticks so often means my wrists and elbows in particular are getting worse, so I’m feeling like I can’t much win right now!

I have decided to apply for the degrees starting in 2015 to give myself time to sort everything out. In the meantime I hope to find a small job to get more used to getting out and about, and hopefully I can keep up the volunteering. I haven’t really decided what I want to do with my life yet, but I’m not worried too much about it just now; I do want to work in anatomy/clinical setting in some capacity, even if it’s just a small lab job. Perhaps translation is in my future (right now I don’t feel confident to take money for my work at all!). I do hope to publish my novels, but I know it’s not easy to reach the success where one can live off novels full-time! (Same goes for music, which I’m nowhere near in a position to put anything out anyway.) Maybe a mix of all these. I do some odd jobs on Fiverr, mainly transcribing and proofing, and I’m hoping to add e-book building to it soon; some people do manage to make their money full-time on it. I’m trying to remember too that life is not all about striving to an end goal; I’m trying to enjoy the ride even now and try not to worry too much about it, while keeping options open and having plans at least in a next couple of stages.

Happy Easter – unfortunately we didn’t do our family tradition of egg-rolling this year due to a continuing feud between two of my sisters, so it hasn’t felt the same. We didn’t even miss it on the year that Easter fell on my youngest sister’s birthday and my Dad was having surgery! I think my sisters did take their kids out and do something themselves. So it’s been a bit anticlimactic this year. Still, hopefully as the weather’s getting nicer, we will get out more, for barbecues etc. (I can’t believe that last year at Easter it was snowing here.)

It’s nice I seem to be treating this blog in part as I used to my Livejournal, for these disjointed entries on the not very exciting events of my life, haha.

Something else I’ve been considering lately is a fundraiser for lupus, probably Lupus UK. I was thinking that because Christmas 2015 marks my ten-year anniversary with the disease, by that point I would like to raise a certain amount of money, probably through an online page, which of course would rely more on promotion and the sharing of the link than anything else. I guess it just wouldn’t feel like I did a lot myself, but I can barely get out more than a couple times a week, and the funds would be the most important thing. 🙂 We’ll see. I’m investigating ideas that I could manage.