I knew my wheelchair was falling to bits!

Two posts in one day? I must be on a roll! Said roll came to a scary stop earlier when I lost a nut from one of my wheelchair’s front wheels! I was volunteering for RNIB again today, and got into the department just fine; in fact, I got out of the department just fine as well, but when I turned to go toward the bus stop, I noticed my chair was tipping quite dramatically. Thinking I’d run over a stone that was caught in the wheel, I leaned over and nearly fell out, as the front wheel on that side was hanging off. I called my mum, saying I didn’t know if I’d get home, as I was in the next town and my bus was imminent; luckily, my colleague helped me out–or tried, as between us I had my sticks, she had her guide dog, so pushing a chair on top of that wasn’t really working! I ended up using it like a Zimmer frame to get to the bus. Mum was picking me up at the other end anyway, so I didn’t have to use the chair again. I know I’m very lucky I could get up and walk to the bus, otherwise I’d have been somewhat stranded! I don’t actually know where I lost the nut; we think it was possibly when my sister and I hit a pothole recently. My dad has a garage in the garden where he does a lot of mechanic work, so we’re sure he has a nut to fit. I’m absolutely fine; it was just quite a big fright! I’m glad it happened as I slowed to turn a corner and I leaned down to investigate. I don’t want to know what might have happened had I been going down a hill or something! (At least I was outside a hospital, haha.)

This week has actually been quite busy for me, which is good! My mood’s been a bit all over the place, and to be perfectly honest, as I tweeted recently, (CN: self-harm)I probably would have relapsed with harming by now if I had more physical ability to clean up the mess of it. Lupus is good for something! Not being able to clean isn’t going to delay it indefinitely, but I’m thankful I’m still at that wibbly-wobbly stage. I feel much better today again, so I think I’ll still be swinging around a lot before it comes to a full-blown relapse, if it does. (end CN: self-harm) So, I’m quite happy to be keeping busy and getting out to keep my mood up just now.

I still have more to go this week. I have a voucher for a restaurant which expires tomorrow, so it looks like my sister and I are going out for food tomorrow! Only if I can manage though, because I do need to keep spoons for Saturday as I’m taking my niece and her sister to our local library for some activities that are on. While it’s nice to be busy, it’s very exhausting. The sooner I get motorized, the easier it will be, at least!

Independent advocacy visit

After mentioning my DLA (disability living allowance) appeal on Twitter, which I had about this time last year and was unsuccessful, a friend very kindly found out for me about the independent advocacy organization in my town. I wrote them an email which was effectively a self-referral, and yesterday I had an appointment to see one of the advocates.

I had an advocate from the local council at my appeal, but to be perfectly honest, I felt that she was fairly useless. I was very overwhelmed by the whole thing, especially when the panel made very dismissive comments about me, but she neither spoke up nor asked me if I had anything to say but was too nervous to speak up. Anyway, I’ll write about all that stuff at another point, as I do plan to write a post about my experience with benefits (DLA/PIP and ESA). So, as I may well end up going to appeal again this time round, I thought it couldn’t hurt to talk to this organization.

The woman was really nice! Although there isn’t really anything they can do at the moment, we had quite a long chat about my situation anyway. I explained that I had written to PIP months ago, yet they haven’t replied yet, so I called them; the woman who took my call said the benefits people would be in touch within 48 hours, but that was nearly three weeks ago now and still nada. I told her that I have some issues with the phone, so it took me a while to gain the courage to call them in the first place, and then I spent that day quite anxious of when they were going to call me back; at least when I make the call, I can decide when to do it. And it was for nothing, because of course they didn’t phone.

Basically she is going to close my file for the moment, until I get a date for the PIP assessment, which, truth be told, could be next year. I’m going to chase this up on the phone or get my sister to do it for me; this is just to get a copy of the application form! Then, as I did with my ESA form, I’ll talk to Citizens’ Advice who will help fill it in and then I’ll reconnect with the advocate to prepare for the assessment.

I ended up yapping away for so long, and apologized quite a few times for it! She didn’t mind though, saying I was very interesting and that she could have listened to me for hours! I talked about my long road to the lupus diagnosis, some things about my mental illness, and about my possible Asperger’s (self-diagnosed while various doctors and my psychologist agree but don’t necessarily want to “pathologize” it by going down the diagnosis route…) seeing as I was very much talking far too much, so it was a bit relevant there! She began to say “This might be cheeky but…” and I thought, “Oh, God, what crap is she going to come out with?” as though it was going to be something problematic about disability from a non-disabled person. Actually, she explained she has a course going in May where she trains new advocates, and she would like me to come to speak to them to give them a first-hand experience of living with disabilities and some of the problems that people will run into, like public transport access. I was quite flattered! I agreed, and so we will reconnect around April to get it going. I’m not really used to making such an impression on someone in a first meeting, and if I can help new advocates see a point of view they hadn’t considered, that’s great. As I said to the advocate, and she fully agreed with me, even with the best intentions and working in the field of disability advocacy, these people still don’t have a first-hand experience of disability! When I was in there talking about access in some fashion, she stopped and said she hadn’t considered that. (I think it was talking about when even a “low” drop kerb is not flat enough for me to get up on my own in the manual wheelchair, then I’m stuck on a road.)

I’m pretty happy and I’ll be glad to have her help in the assessment and/or appeal, even though they can’t actually add anything themselves; their job is basically to make sure I’m picking everything up, understand what’s going on, that I have said all I want to say, etc. As well, it’s the support aspect of having someone by your side. Medical assessments can be very daunting, and the appeal process definitely is. Knowing that someone is there with you doesn’t make you feel so small on the other side of the panel.

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.

Latest wheelchair adventures

So, as time goes on and on, I’m discovering more and more how the world is totally NOT adapted to wheelchair users, and that I can’t last much longer with a manual chair, with my upper body also affected by my conditions. It’s hard enough finding the physical strength to push myself, but my shoulder joints in particular are not feeling good, acromio-claviculars (where the collar bone joins the shoulder). I’ve been holding off on steroid injections in my shoulders until I’m desperate, but propelling myself in a manual chair is not exactly beneficial for the poor things.

A few weeks ago when I went for the interview for the RNIB position was the first day I had a proper day out alone with the chair. Usually I have my twin sister there to push me, although I’ll go around on my own in the shops or sometimes I manage around town while I’m waiting for her to get off work, for example. This trip was all on my very own from start to finish, so I was quite nervous how well I’d manage. Luckily, I can walk with my sticks, but obviously it’s not easy to push the wheelchair from standing and use the sticks at the same time, but I did manage just pushing, seeing as (funnily enough) my hospital is up a hill that I could never propel myself up. I managed the bus journeys fine on my own–I folded up the chair and sat in a seat, first to give my poor bum a break and also to sit facing forward on the journey. Traveling backwards is fine for local buses, but not for a whole journey to another town, even without my nausea. The biggest problem with the buses is the pole they have beside the wheelchair berth; it makes it very difficult to maneuver in and out of the space and I often get myself somewhat stuck.

The big mistake I made that day was getting the local bus into town and overdoing things. First of all, I made the journey backwards, and oh, of course, my nausea was so so bad that I spent the whole journey screwing up my face to hold back from throwing up. Lovely! Getting around town wasn’t too bad; I went to the mall to get myself a Subway and to have a look for some Christmas gifts (I know, I want to pretend it’s not happening, but I’d be ecstatic this year if I actually manage to get the few gifts I’m buying sorted well in advance for once!). In Subway it’s always quite tight spaces, even without a chair, not only in between the tables but going around the queue as the standing space is bordered by tables on one side and then the toilets at a very tight corner. Not exactly intelligent design. I got my chair round and when they asked if I would be sitting in, I joked “If I can find a table!” I did hear one of the workers asking another if there was a particular table free as she had a customer in a wheelchair waiting, but I never heard anything after that, so I actually ended up sitting just outside the restaurant area in my chair and called my sister to chat until someone close by finished up and I managed to get a table at a more spacious area.

The mall was generally good, nice smooth floors and elevators as you’d expected. The only issue was some fairly steep gradients; gradients in grounds and floors don’t seem much at all until you’re rolling up or down them, let me tell you! The slightest incline in a pavement can make it virtually impossible for me to keep in control of the chair. One in particular was a challenge to get up, and partway up a child stepped in front of me; I had to keep going or I’d be rolling back down! (Obviously he got out of my way. :P) As for going down inclines, I thought a few times I’d end up on the heels of people in front of me, so I often waited for a bit of free space. Just little things like that you don’t consider would be a problem, and maybe they’re not for many manual wheelchair users with good upper body strength, but they were exhausting for me.

When I was getting the bus back to the hospital in order to catch the bus back home was when things really went to pot! A guy I’d got talking to in one of the shops ended up bumping into me at the bus stop and before long we were chatting again like old friends, which was nice. What wasn’t so nice was him telling me to get a particular bus and others at the bus stop agreeing it would get me back to the hospital. First, I missed the one that came because there was already a wheelchair on it–a third guy came along and had to be turned away too, so he and I had a bit of a moan about it. It’s frustrating that buses will only carry one wheelchair. There must be people who go out with other people in chairs–then they must take extra buses? As the guy was saying to me, they could make at least another wheelchair space, especially as there’s often extra space for buggies which could go into a designated wheelchair space.

Anyway, when I finally got on the next one, I got settled in and then the fare man came to sell the tickets. I asked for the hospital and he just said, “You’re on the wrong bus, mate.” I was like “Are you serious?!”, explaining people had told me this one! He was really helpful and got me off at the next stop and gave me directions to the bus stop I needed. Unfortunately it was up a hill. I could not manage at all and had to push my chair up the hill again. Then when I got the chair onto the bus, I was still standing when the driver started driving and so I went flying! On top of that, when we got to the hospital, I had to wait ages and knock on the driver’s booth to get him to get the ramp because, in his words, “I forgot you were on board, pal”. Charming!!! I should mention that this whole incident with the buses was even more stressful because my sister had told me the last bus home was at 16.10 (which it wasn’t, by the way!).

The same trip to Dundee this week was not as bad because I didn’t go into town, but the bus home did break down, so we had to get onto another one on the motorway. The driver made sure in advance I’d be fine, and when the passengers were disembarking, at least three asked me if I needed any help; one woman offered to carry my backpack. I thought it was really kind, but I got an insight into why so many disabled people find it frustrating to be constantly offered help. I thought, the third person would have heard me refuse the first two, but still asked me as though I’m not sure of what I can and can’t do, which is annoying, to be honest, but I was grateful for the offers. We disabled people very often feel torn between being grateful for offers of help but resenting something in it at the same time. I know people mean well most of the time, but there is an underlying issue sometimes.

Anyway, I didn’t have too many dramatic problems, thankfully, although I really do struggle in the manual chair when I’m on my own. In preparation for returning to uni to do my Masters, I’m setting up a fundraiser page so I can get myself a motorized chair, yay. A manual chair is very stressful on many of my joints due to hypermobility. Fingers crossed! One problem I did have was in Home Bargains, where the wheelchair trolleys were being used by employees to stock the shelves. ¬_¬ I did complain to them on Twitter at least.

But as every day in a wheelchair teaches me again, the world has a long way to do in terms of accessibility.