How I’m finding things with my motorized wheelchair

Getting a motorized chair has been the best thing that has happened to me for a while! Being able to go out on trips and outings alone without having to rely on family members to drop me off, pick me up, push my chair, is just … amazing, to be honest. I forgot how much I’d come to rely on others to get out of the house and having regained a bit of freedom has felt really good.

Of course, I still do rely on my family but it’s not a terrible thing. Like many disabled people, I do have many moments of feeling that I’m a burden on family, even though they are happy to help. It’s just nice that if I fancy going to the library, for example, when I’m home alone, providing I have the spoons, I can go without having to wait for transport and a guaranteed pick-up.

This week I started my Masters degree in biomedical science, and without the motorized chair, I simply couldn’t have done it at all. I commute about 60 miles, and as my twin sister, who is my main caregiver, works, then of course she can’t be around for me all the time. I was managing to volunteer on my own using the manual chair (with my mum dropping me off and picking me up at the bus stop), as getting off the bus at the hospital where I work and getting into the department is all flat and fairly smooth, but I was still doing more damage to my shoulder by propelling myself. Getting myself around the city for uni was simply something that couldn’t be done.

With the motorized chair, I have been managing much better than I’d imagined, including having early mornings and 7:00am trains. To be able to get about and do things without so much struggle and pain is great and I’d forgotten what it was like, to be honest. Even when someone was pushing my manual chair, it quickly became very uncomfortable and the pain after a full day in it is unreal, but the motorized chair is much more comfortable for quite a long time.

Of course, there are still access issues, because, you know, that’s how the world is. Some of the positives are that I’m managing on the city buses, even if there’s not a lot of space to get round the corner past the driver’s booth, nor to maneuver into the wheelchair space if the bus is busy, but actually I think I manage this better on my own than I did in the manual. The train service in Scotland is pretty impressive compared to stories I hear elsewhere; I only have to book 6 or so hours in advance for assistance, and actually most of the time, it’s o.k. to just turn up at the station and arrange a ramp. The staff have been excellent, and commuting isn’t turning out to be as frustrating as I’d thought.

Things are going well at uni too, especially as the new buildings of my faculty were specifically designed with wheelchair access in mind; the corridors are extra wide, the lab benches are adjustable, etc. I have a campus map with accessible routes and entrances to buildings, although on my first day I did have a chair lift that wasn’t working–honestly, it’s not even a surprise to me anymore, to be honest!

Anyway, I just wanted to say I’m getting on well. Different people have different needs and preferences, but with my conditions affecting my upper body as well, getting motorized has been the best option for me and I have no regrets! (Well, maybe I regret the heightened electricity bill from all the battery charging! :P)

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.

Conventional success – an unrealistic expectation for many disabled people

Well, friends, I’ve just had an encounter on Twitter with someone spouting some very awful ableist things, leading me to write a lot of thoughts on my personal Twitter page. I thought it might be a good idea to basically get these thoughts out on here too. It will probably end up a fairly disjointed post about ableism, abled people’s expectations of disabled people, and the justification of internet activism and defense of its critics.

Basically, the person in question claimed in less polite words that disabled people who don’t achieve success have simply given up on it. The only difference between those who do and those who don’t is willpower, I was told. Two words = Helen Keller. Apparently because Helen Keller overcame her obstacles, I was told, none of the rest of us really have an excuse. The person did not heed that fact that not everyone has the same disabilities as Helen, never mind the resources. It’s a given fact that rich disabled people usually manage to reach more conventional success than the rest of us, because they have money for aids and resources that we don’t. (Case in point, I would have fewer problems with my upcoming Masters, mainly because I could have bought a motorized wheelchair a long time ago and moved to a city that offered different courses part-time.)

This person did not heed the fact that failing to find the strength to continue life seeking our pleasures is most often a symptom of mental illness, not laziness. Along with Helen Keller, they used themselves as the holy grail of “disabled people who achieved success”, implying that because some can, the rest of us are simply making excuses for ourselves. We’re often called pessimistic or defeatist for accepting that particular activities or paths are beyond our limits, while it’s actually more harmful for people to cling to the idea that they can do *anything* with willpower and injure themselves, mentally and physically, by pursuing something because society will not allow us to step back and say “No, I can’t.”

Recognizing our personal limits and acting upon them to say “I can’t” is not the same thing as just giving up on everything. In fact, we disabled people often can only get through a normal day with sheer willpower and stubbornness. No, it’s not a miracle that a disabled person left the house–we’re not here for inspiration porn–but it’s a fact that many of us have to put so much more into the little daily things that people take for granted. And for those of us suffering from mental illness, sometimes just literally surviving the day is a success.

But abled people have a very one-sided idea of success, going somewhere along the lines of being functionally independent, making lots of money and having a conventional job. For many disabled people, this is not an accessible path. Often if we do manage to get a conventional job, we cannot work full-time, need plenty of accommodations, and such things. Many of us are always going to need a family member, partner, or friend around to help us out with some things. According to society, these “dependencies” are the result of us not working hard enough for our full independence. I don’t understand why we are not “allowed” to seek help; of course we want as much independence as we can, but independence should not involve stubbornly refusing help for things and making ourselves worse because we feel like we must do every little thing for ourselves or we’re failures.

One thing the person literally said was that we’re at fault because every moment we spend tackling ableism online is not spent applying for jobs instead. Wowee. There are a few points in here that are implied to me: 1. that disabled people are not allowed to have “free time” and hobbies; every moment we’re awake we must be *bettering ourselves*, 2. that internet activism is unimportant, futile, and not a measure of success. I don’t know about you guys, but challenging ableism and changing the views and behaviors of people toward oppressive groups is success in my book!

Sometimes, when engaging with ableists, I do get anxious and/or bitter. It’s often the time I simply block them for the sake of my mental health and no longer engage. But, like today, much of the time I’m perfectly calm and civil. Of course the person I’m engaging usually decides I’m the stereotype of an angry crip and uses my apparent anger at my oppression to dismiss everything I’m saying. While this is problematic even if the oppressed defender *is* angry (we are justified to be angry at our systematic oppression after all!), it also demonstrates the infantilization disabled people go through where, if we say anything with passion or emotion, we’re written off as children taking tantrums. Any mention of our disabilities or the obstacles we face, and we’re told we’re “wallowing in self-pity” and that a negative attitude isn’t going to solve anything. Aside from the fact that we’re justified to have days where we do feel sad and bitter about our experiences, it shows that disability is viewed inherently as something that should never be mentioned. If you do, you’re complaining and whining about your experiences. Those of us who are very open and vocal about our disabilities are often regarded as spending our every moment wallowing in our “misfortune” instead of just shutting up about it and getting on with life.

People often believe that any level of engagement with something can be transferred to the equivalent hours in a job, for example, if someone spends some days a week volunteering, undertaking a hobby, or, indeed, writing a blog about disability or combatting ableism online, then “why can’t you spend that same time doing a job instead?” I don’t think I need to go into too much detail about how oversimplified this is. Volunteering brings so many accommodations that are difficult to find in a paid job, such as extended breaks during the workday, extended periods off, deputizing duties to colleagues, working a very low number of hours a week. Re hobbies, we can spend a very long time producing something that may not seem like much at all to an abled worker. I crochet when I’m able. If my job were crocheting (just as an example, haha), I doubt my employer would be satisfied enough with my rate of output to keep me in the job. We often wake up in the morning with no idea whether we can make it in or not. The companies I volunteer for know this, and I don’t need to panic every time I can’t make it that I’ve let everyone down because they don’t have anyone else to do my job. I have extended periods of time where making it in is the rare exception, rather than not making it in. How many employers would pay me for a few hours a week to take long breaks, not do tasks I can’t manage, and when I’m not even able to turn up half the time? Of course I’m trying to find a position that works for me, but it’s a very simplified view of things.

Re online activism: people don’t realize that this is what many of us do in our spare time, alongside rather than “instead of” working, for one. So to suggest that we are wasting our time doing this when we should be working just reinforces the “disabled people aren’t allowed free time” idea. The other massive issue with it is people suggesting it’s ineffective and futile to even try. Ironic, isn’t it, that the same people who call us defeatist for identifying and living within our limits will say “Don’t bother fighting ableism; it’ll always exist, so you’re wasting your time”. Well, out of magically curing my disability and making the world less ableist, I know which one I actually have a chance to achieve. As I said on my Twitter, “No amount of willpower is going to make me able to walk, grow money out of nowhere, and balance my brain’s chemicals.”

In a nutshell, just because what a disabled person is doing with their life doesn’t fit conventional success, that doesn’t make it meaningless or mean that we’re just not trying. It means that “success” isn’t a monolith, and that different people with different obstacles have different goals in their lives. You don’t know how much or how little they’re trying, and you certainly don’t know how much meaning their lives have.

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. :/)

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.

New volunteering position–admin assistant for RNIB

Yet again, it’s been far too long since I wrote anything here. As usual, it’s been a combination of crap health and not having much interesting to say! (Or indeed, me getting little bits out on my personal Twitter about my day and forgetting to collate everything into a post here.) So, I thought I’d write a post generally about my recent days out and the new position I’ve got volunteering for the Royal National Institute of Blind People (RNIB). They were looking for an admin assistant at the hospital about 20 miles from me, and I’ve been looking for admin work, so it’s the perfect combination. I’m hoping later on if I can get a small part-time job to get something in the admin sphere rather than retail, although I’m continuing to work in the charity shops, each one every two weeks. So many allowances and accommodations are made for me in volunteering that are just not easy to find in a paid job right now. I’ll probably write more about the antics with my first proper days out alone with the manual wheelchair in another post.

I went through a couple of weeks ago to Dundee for the interview and met the woman I’ll mostly be working with, Ann-Marie, and also one of the guys who works through in Glasgow, Blessing. The interview was very informal, and I felt I did really well. I’d answered a lot of their questions before they actually came around, haha. I have no previous admin experiences, but of course through uni and just generally computer use, I’ve become very computer-literate and tech-savvy, and am very comfortable using a lot of programs. I’m also learning coding languages. The questions were more based on how you prioritize and ensure patient confidentiality and this kind of thing. I think it also helped I’d done a placement in the orthopedics department at my local hospital, although this work is more behind the scenes with the RNIB rather than the NHS.

The RNIB basically provides all sorts of support for people with impaired sight or sight loss, including general emotional support with coming to terms with sight loss or more focused approaches to finding employment and that kind of thing. You can read more about them on their website if interested. They also have many aids and accessories for sale to help with everyday living.

Later that day, Blessing emailed to let me know I’d been successful, which is great news! I went in a few days ago more to just hand in IDs and got a short introduction to the people around and a look around the department. It’s a fairly small outpatients department, so it can be quite a pain with the wheelchair. The staff toilet is not that accessible either as it has two doors and a corner to get in, so I’m not even going to try with the chair! It’s fine for me as I can use my sticks, but it’s not really acceptable. They weren’t sure how mobile I am so they sorted out making sure I could get my wheelchair under the desk and stuff, but I said I’d probably shift over to a normal chair while I’m there anyway, as sitting in the wheelchair for too long gets very uncomfortable and sore on my hips.

I’ll mostly be working with Ann-Marie and Nina, who is sight impaired herself and brings in her guide dog, Ivy, when she’s in working. I got to meet Nina and Ivy, and it’s very exciting to have regular contact with an animal again, since I had to stop volunteering at the cat shelter. Ivy’s very playful and lovable when her harness comes off, and it’ll take me a while to get used to a boisterous dog! She’s absolutely lovely.

My main tasks are a hodge-podge of things, really, depending on what needs done. Ann-Marie basically needs someone to tackle the piles of paperwork, so much of it will be entering data and doing spreadsheets; I told her I’m one of those odd people who fairly enjoys doing spreadsheets and statistics and entering data, haha. I didn’t quite tell them about my elaborate spreadsheets for my novel writing, my book collection…! But there also some other tasks such as printing Braille stickers on our leaflets so that Nina can get around more easily, organizing and ordering documents, also phoning patients and booking venues for various workshops that they offer. It’s one of these positions where you more or less learn your way around on the job and there are always people around. I met a few of the consultants in the department too.

Pending my references, I should be starting in a few weeks. I’m very excited! Of course, it’s a big undertaking physically, as I have to travel through to Dundee one day a week and I’ll still be doing a day in my local charity stores on top of that. I’ll probably take the wheelchair through most times, just to be on the safe side, even if I end up using my sticks while I’m there. There is a bus link between the two hospitals, so it’s not too difficult for me to push my chair up the hill to my local hospital to catch it. The charity will also refund my travel costs–I don’t claim bus costs back from the local stores, as it feels very rude and unnecessary, but I probably will claim for this as it’s quite a lot of money for the return ticket each week. They know about my lupus, and when I went to hand in the IDs, we ended up just chatting for a while, and the topic did come up so they’ve got some awareness of how it affects me. The great thing about volunteering is that they are usually so much more willing to make accommodations, and of course if you can’t make it one day or can’t do an assigned task, there’s not the same pressure as there might be in a paid job.

So it’ll be good to get me out of the house more often and build up some experience. I’m hoping I do manage the extra load, but I was working back up to doing the two charity shops per week as I was before my surgeries last year anyway. I’m excited to start. 🙂

More wheelchair travels and disappointment

Thank goodness for all the kind Samaritans who help out whenever I go out with my wheelchair. Even with my sister there helping, you realize that the world is so not catered to wheelchair users. We took a trip through to Glasgow to visit a few shops and go to the cinema–it was so odd being back there, in a way like I still lived there and in a way like it was completely different! We took the train, and at least there there were lifts to get up to the footbridges and down again, although it does require somewhat of a detour. On the train, there were two lovely guys who gave us their seat and made sure the wheelchair was secure for the journey; they were very happy to help us off when we got there too, but we didn’t need it so much as I usually just jump up and use my sticks to get on and off transport as it’s easier.

Although I can’t manage for long, when I’m in stores, I like to wheel myself about and just go off on my own for a bit. Outside though, I go so slowly that I really do need my sister to push me; the problem is that she is small in height and weighs less than I do, so it can be a bit of a struggle for her to go up hills for example–and I usually get out and go up the hill on my sticks if I can! Of course the solution to this is that she gets fitter or I get someone stronger to accompany me! It’s a bit of a double-edged sword with using the chair, I think; on one hand, it’s amazing and it means I can get out more and not overexert, but I feel bad for being quite the inconvenience–getting the chair in and out of the car is a pain, having to detach and reattach the feet; having my sister have to exert herself so much to get me around. Also, as I think I mentioned before, there’s a process of getting into that mindset of being comfortable when people go out of their way to help you. It feels good that people are helpful, but there’s a bit of guilt and embarrassment that I don’t want to cause a scene, which I know is ridiculous, because I personally don’t feel put-out at all to help a wheelchair user.

The cinema was a bit of a pain. Although it’s the tallest cinema in the world, the lift was frustratingly tiny! In the actual theater, there was a wheelchair space, but it’s naturally way down at the bottom, and I just couldn’t have sat there and craned my neck up for the whole movie. I don’t know how they could better allow wheelchair access to the upper rows, though–as usual, I went up on my sticks, leaving my wheelchair in the wheelchair space. But the biggest problem–the toilet! The disabled toilet had a long thin hallway-kind of bit after you go in the door, a bit like my bedroom at home, which was fine on the way in, but coming out with the chair was a nightmare. The hallway section was barely wide enough to fit my chair, so I could only approach the door head-on, and it meant that when I grabbed the bar of the door with one hand, I was quite stuck. If I use only one wheel on my chair, then it turns rather than going backwards, but I needed the other hand to hold the door! After managing to scoot back somehow, I lost grip of the door. I was getting ready to pull the alarm cord, seriously. (My sister had joked before I went in that I should take my phone just in case, even though I’ve had no problems with getting stuck in toilets before. :P) I had to hurt myself quite a bit to get out. There would have been no issue if there was a wider space around the door instead of this thin corridor. I mean to write to them about it.

We popped into Mcdonalds for a bite to eat before heading home. Of course this was another issue, with there barely being any space to move anyway. The one we usually go to in Perth is fairly roomy, but this was in the town among the other shops and really wasn’t. We did fold it up and store it as close to our table as possible, but it still meant people had to struggle past. Again, not too bad for me because I got out with the sticks and sat at the table, but I was thinking all the time, what for the people who can’t? They had made the accommodation with the automatic button for the outside doors for wheelchair users, but I guess not really thought beyond that enough. Wheelchair users staying in their chair would simply have to block up the aisles.

On the train back, they were very helpful, very ready with the ramp this time and taking note of where we were getting off to help us then. There was already a wheelchair user on the section, meaning there wasn’t much room for me, which was fine because I simply got out again and sat in a seat. But then there was the issue of where to put the chair–I ended up having to tie it up in the bicycle section. We commiserated a bit with the woman who was already there.

At least in Glasgow, most of the kerb edges actually have flat edges where you can go up! Here in Perth, most of the parts of the kerb that come down are still quite a bump that we struggle up them; if I were on my own, I would never be able to get up them. Makes a bit hard to even cross the roads if there’s no way to get yourself onto the next pavement! There have been sections with such a bump, that other people have had to come along and help us. The council had to make these “flat” areas when they did the paving anyway; I wonder how much trouble it would have been to actually make them flush with the ground. Not much, I’d say. I think I’m going to write to my local paper about it.

I’m happy that so many aids are already in place and strangers on the street have been so kind and helpful, but it’s not enough. I feel like the world makes a few accommodations and then says, “That’ll do. We accommodated for the disabled.” It feels like we just don’t factor into consideration fully for things, like paving the kerbs flat. Making the world accessible for wheelchair users doesn’t really affect the able-bodied, which is the annoying thing. It doesn’t affect them badly to have alternative arrangements in place for us. Too often, it feels that accommodations for the disabled are an afterthought. Part of it is me adjusting to a lot of it, I think, but so much is simply that the accommodations aren’t there in the first place; even people who have been in chairs for a long time struggle. I’ve heard it said that having the disability doesn’t disable you, but the treatment by society does, and in many ways this is true. If the accommodations are in place, there’s no reason why we can’t have outings and do errands, etc., just the same. Yes, life can be hard, but councils and establishments and so on could do more to make sure it’s less of a struggle.

Flare and wheelchair travels

Well, I’m shocked that I haven’t written here for two weeks! I have been suffering quite a flare, and for a while wasn’t able to do much at all. In this time, my wheelchair arrived! It has made me a lot more able to get out and about, thank goodness! My lovely twin sister doesn’t mind pushing me, and we’ve had a couple of days in town; I’ve just been glad to see some of the nice weather! It’s a lightweight travel chair, as we were thinking ahead for possible trips–I think I mentioned this already somewhere. I still take my sticks with me on these days out, but having the chair has been great, and means I don’t have to cut days out so short anymore, and so on. It means I can actually go food shopping and not have to leave the supermarket and wait in the car because I’m not able. Yay! I’d definitely struggle on my own with the chair, particularly on kerbs–I notice how few of them are actually flush with the pavement, which is a problem, and hills are just a no-go. However, when I go volunteering and so on, I should manage on my sticks as there’s not much walking about to be done.

I did pop into the shops I volunteer at while we were in town–while they weren’t too happy to see that I’d declined this bit further, they were happy to see me. And in one of my shops, they had done an Easter draw for the volunteers, and for a change, I had some luck and won the vouchers, which contributed toward an electric toothbrush (easier on the arms!). We went for a walk around one of the inches here (basically a big green park), and it was lovely, although a bird did do its business on us!!! Well, I hadn’t laughed like that in a while, anyway! 😛

Today we took the chair again and went to see the Ancient Egypt exhibit in our local museum, as its the last day. As it’s a small town, it’s a small museum, but it’s always nice for a wee visit. Afterwards we popped into my sister’s old work to see her former colleagues and give them a gift, before going off for some coffee while Starbucks is still doing its happy hour! Nothing too special, but oh, it’s a good feeling to just get out and do these days and not have to labor over every step. Getting on and off the bus with the chair was easier than expected too, so thankfully my twin won’t have to push me all the way into town every time.

It’s just a relief that although my health gets worse, there are aids that help and make it easier. There’s a big mental block when you decline to a new level, I think–I remember how awkward it was for me going from using walking sticks just occasionally to needing them pretty much permanently. Now I’m using the chair occasionally, but we’d been talking about buying a lightweight wheelchair for a long time, and my sister had suggested so many times to use the wheelchairs in the supermarket, but for some reason I wouldn’t. I always think I’ve come to terms with my disability, and then I decrease to a new level and have to kind of accept it all over again! My sister found it rather amusing because recently in a TV show where a character was refusing to get out and about in her wheelchair, I was saying “Ach, just use the chair; you’ll get out; it makes life easier; it’s not such a big deal!” And then when it became my turn, I kind of saw the reservation about it, even if it’s fairly irrational. But I feel good about it now–I know which is the better option out of being in denial while refusing to accept the aids I need and admitting to myself that I do need them, I have gotten worse, then accepting all the help I can get to still have some semblance of normality in my life!

One point about using aids that are so much more visible is that my illness is a lot less invisible to my family now, which overall is a good thing, I think, although I do have days where I just want to be “normal” as I’m sure we all do, without having people be able to see our disabilities. But actually, ultimately, it’s a lot easier in so many ways when it does become visible with closer family and friends. Mum has been asking quite a bit about lupus more regularly now, and while I’m sad to have to give bad news in the answers, such as the likelihood of progression rather than getting better, to have them actually interested after so many years makes me feel happy, validated. For so long I went without a diagnosis, yet when I finally got one, I hadn’t felt like they invested much interest in the condition. But things are getting there. 🙂 At least they’re not being nasty about it! (Which I’ve certainly had from family members when I was undiagnosed, and I think they as well as the doctors thought I was rather a hypochondriac.)

As I think I mentioned a while ago, I’m planning on going back to university to do my Masters in biomedical science. I have to talk with the bank about certain loans, and have to work out somewhere to stay that’s fairly affordable and close to the uni, but I’m applying for a 2015 start so there’s still time. As much as I still have days where I feel sorry for myself and wonder how far I’d have gotten in a career if I didn’t have lupus, I’ve more or less come to terms with the fact that I can’t be wedded to a hectic career such as forensic pathologist as was my dream, but I can still work within the field and find a job I love. Otherwise, I’m just getting on with hobbies, and need to get back onto writing up my weekly goals here! I hope that I become a lot more productive in general as the nice weather sets in.

Mainly babbling!

I haven’t checked in for a while, not even to do my goal list for the week. No matter! I’ve been a bit all over the place health-wise, but I was happy to get out of the door today; alas, it was to the dentist for an extraction! So while my face comes back to life, I’m trying to resist keeping my tongue out of the gap. 😛

Nothing too much has been going on other than the general flare. My bald patches are getting worse accordingly; one is pretty massive by this point. I’m thankful that it doesn’t bother me any more, and I keep my hair quite close shaven usually, which keeps them visible; for most of my first year of uni, I had a hat pretty much glued to my head even in the chemistry lab! One day I just thought “Who cares?”, didn’t put it on, and never looked back! I know it’s a lot harder for people whose looks are more important to them; I’ve had people say I’m brave, they could never do it. To make a sweeping generalization, hair is more important to most women than to men, so I understand a woman in general might struggle more – but hey, even I did at first, and I don’t really care much for my appearance either way. It’s just hard to have visible symptoms whatever they are.

Something I’ll have to bring up to the rheumatologist next month is both my sinuses and the muscles in the back of my head. Long before I was diagnosed with lupus, I was on medication for spasms of the muscles in the back of my head. I notice particularly when I play with my nephew how much it flares up; I don’t know if it’s the bending down, because I can’t bend much! But it’s a very strange feeling, not really like muscle spasms elsewhere in the body. Combined with sinus headaches, it’s just very frustrating, especially as I get quite painful mastoids (the lumps of bone behind your ears). I have pain the upper teeth too because of the sinuses – right now it’s worse than my lower jaw, which had the tooth extracted today! I’ll just have to see what she says. My ears are a pain in the butt too with getting blocked up but that’s because I have anatomically irregular ear canals, apparently, so even syringing them can be a pain.

My fitness plan has rather gone out the window due to this flare up. Unfortunately my occupational therapist brought the next appointment forward nearly a month! So I see her on Monday and don’t have much to report. I’m hoping to ease back into the daily walking by going around my garden a bit rather than walking to the store; at least I can stop whenever I need to without having to wait until I get back home. Oh, how much easier would life be if it was a simple case of persevering and building fitness without any adverse effect! Alas, as it is, as I’m sure I’ve mentioned before, using the sticks all the time is putting so much pressure on my upper body joints, which aren’t exactly in a good state anyway. So it’s a catch-22 with getting out really.

On a similar note, my wheelchair arrived! It’s a self-propel travel chair, and I plan mainly to use it for big outings, particularly if my sister and I get on the small holiday we postponed a few months ago, just down somewhere in England. I used a store wheelchair last time I went to the supermarket, and ohhh, it was glorious. It made shopping so much easier–I don’t get to go often because getting around the store is just such a mammoth task, even with the trolley for support. For a while there was a mental block with using the chairs there, but I’m glad I did! My sister is thankful I can come more because I’m a notoriously fussy eater, and she finds it hard to shop for me when I’m not there, and we do prefer to be there in person to pick out products rather than get it delivered.

Otherwise, I’m just getting on with my usual stuff, mainly translating, and working on transcribing interviews for a client. It’s my older nephew’s thirteenth birthday today, so excuse me while I feel ancient with a teenage nephew! It’s hard to think that I was quite a bit younger than him when he was born! I plan to get to the Ancient Egypt exhibit this month in my local museum before it ends, and on the same note, I need to get round to getting my new tattoo, which is Ancient Egypt-themed (Mum was meant to pay for it for my graduation… I’m such a procrastinator in browsing tattooists in this town!) O.k., I’m logging off before I babble on even longer. 🙂 I hope everyone’s well.

(Oh, one last thing: I have a few people interested to do the Lupus UK fundraiser I mentioned a while back, so if I can get them to confirm participation, I guess I’ll be setting it up! :D)