Yoga and vegetables – NOT a cure-all for chronic disease

In the wake of Bernie Sanders’ suggestions that chronic illness patients simply replace their use of opiates with yoga, my ongoing frustrations with non-disabled people’s ignorance of disability and medication in particular is running rampant. I and most other disabled people I know are frankly tired of being shamed for the medications we take, for our quality of life, often to actually keep us alive, because non-disabled people have decided that they now know everything there is to know about pharmacology (and let’s be honest, it’s often based on fearmongering posts full of ignorant rubbish spread on sites like Facebook. Or at least in my experience.)

Believe me, disabled people have probably heard all your suggestions for an “alternative to medication” before. I’ve been told it’s my meds poisoning me, to do yoga, to find Jesus… So I guess a first point to make is stop believing that you are the first person to give us this “amazing” life advice to eat more vegetables and do yoga to cure our diseases! (We *have* tried going unmedicated before, you know.) You probably mean well, but do you know how much it bores a person down to deal with uninvited advice on “cures” that 1. don’t work, 2. we have heard a million times before?

Aside from the ridiculousness of suggesting that yoga could possibly take the place of opiates and be just as effective, people seem to forget that some of us can’t actually do yoga, whether simply physically unable or because yoga and such exercise exacerbates our conditions. If you’re thinking “well, exercise usually hurts at first, but the more you push through, the fitter you’ll get and the easier it will become”, you’re probably able-bodied and assuming that disabled bodies react the same way as yours. Here’s a clue: they don’t, always. I have internalized a lot of ableism based on the “lazy scrounger” rhetoric, and often think “Are you really doing as much you can physically?” One day of pushing myself, even with a motorized wheelchair, can put me in bed in agony for days to come. I know my own body and I know its limits. I have spent years trying to keep up with able-bodied paces and limiting my medication as much as possible. All that does is decrease my quality of life, exacerbate my mental illness, and restrict my life. So forgive me if I want to do whatever I can to avoid that scenario.

The pharmaceutical industry has its problems. You’d be a fool to believe otherwise, in my opinion, but that is hardly a basis for denouncing every single aspect of medicine. There is also this widespread belief that doctors keep patients medicated in order to profit from them as returning patients. Well, there is actually a shortage of specialists to the number of patients who need them, so doctors aren’t going to run out of patients any time soon.

Yoga can help many people, but if you think that’s a universal cure-all for any disease and that we can give up our medications in favor of it, then I’ll be frank: you are wrong. If it helps you or someone you know, great! But I beg you, stop shaming those of us who it doesn’t help. We’re not just being stubborn: we have tried these things. Just because we have a pride in our disability doesn’t mean we don’t do everything we can to increase our quality of life. It’s not a coincidence that people with my main disease lupus now survive much longer with drugs like immunosuppressants than we used to, when the life expectancy was closer to 40 and the rate of serious complications was much higher. In the 50s, people could expect to live about 5 years following diagnosis. This is my 11th year with this disease, and although mine continues to progress, my medication has slowed down that progression much more than it would have been otherwise.

This unorganized post basically comes down to this: disabled people know their bodies’ limits and limitations. You don’t. Most of us have found that without medications and aids, our quality of life is just too low. Many of us also find that one of the hardest issues to live with day-by-day when you’re disabled is the ignorance and ableism of other people. We are tired of unsolicited advice from people who barely know us or our conditions. Supporting us does not involve shaming us for the things that we do to have the best quality of life we can. Many people successfully incorporate more natural remedies with their medications or even manage to come off their medications altogether; this is great, but by far this is not even a choice for most of us. If you want to truly learn about disability and disabled lives, listen to disabled people, not non-disabled people spreading inaccurate and accusatory rubbish on sites like Facebook, where you read things like how “miraculous” it is when a wheelchair user stands up, or even walks (i.e. they’re faking), when the reality is that most wheelchair users are not paralyzed and *can* stand or even walk for a time.

Honestly, the “bitter crip” stereotype is a thing precisely because non-disabled people have decided they know more about our lives and needs than we do. To support us, listen to us. Nothing about us without us.

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Lupus cystitis confirmed (~Nov 2015)

(Whoops! I accidentally posted this as a “Page” in about November, haha, so here it is as a “Post”! I’m well overdue a general update as well, so I hope I get round to it soon. Probably my “symptoms” and “medication” pages need updated too, so I hope to do it after my upcoming deadline for uni is over with.)

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I need to get better again at writing here. (I feel like a broken record saying that now!) Anyway last week I had my cystoscopy, and, surprising no one, lupus cystitis (interstitial cystitis) was confirmed. I’ve had quite bad luck all week last week (including getting stuck in a lift at uni when someone knocked against my wheelchair and the power wouldn’t switch on!) and so can’t say I was too surprised when the appointment had a lot of complications!

As I’ve mentioned before, my symptoms were mainly high pressure and pain in the bladder, but not being able to pee easily even then. Often it seems I can feel the urine inching along slowly before minutes later coming out. Often it comes in spurts and dribbles, or if the stream is strong, it will abruptly cut out and start again numerous times. It’s very difficult to sleep when your bladder feels full and painful and you can’t pee!

In the last post, I mentioned the problems I had at the last appointment doing the flow test and so I kind of expected similar issues. I got there and couldn’t go for the flow test, so as usual they gave me jugs of water to drink. I went to try a few times, staying in the toilet for a good 10-15 minutes each time to no avail, so came out again to be faced with more water. So far, so usual for me!

However, I think I had about a liter of water and still no result. The pressure in my bladder got high and I became very uncomfortable. A short while later, unfortunately it backed up and my kidneys were in agony as well as my bladder, I broke a massive sweat, was swearing, praying, and was nearly crying, tbh! The nurse asked the consultant how to proceed, and did the ultrasound anyway to check if my bladder was actually full. I can tell you it’s very uncomfortable having an ultrasound probe press down when you have half a liter in your very painful bladder!

Unfortunately it got to the point where there was no other option but catheterization. You’d think it wouldn’t be so hard just to go to the hospital and pee in a special toilet without much ado, but I guess the point I was there is because of bladder issues! They took me round to the recovery word and the nurse was amazing, even though she had a lot of trouble getting the catheter in and had to get a second nurse in to help–apparently the anatomy of my urethra isn’t that straight forward! (I had a similar issue when getting my ears syringed–the shape and path of my ear canals is an anatomical variant so the nurse had trouble getting to my eardrum!) The catheterization was painful at times, but by this time my bladder and kidneys felt like they were about to rupture so I didn’t really care about much else but the relief!

They finally managed to drain most of the urine–they couldn’t get it all because of the position I was lying in, and then after a rest I finally got to see my consultant! He was very reassuring as usual–he’s always very sweet to me. He too had trouble getting the cystoscope in, but thankfully he didn’t find anything overtly abnormal like stones, massive shrinkage, tumours. Unsurprisingly, the damage is from the lupus. They’re going to teach me how to self-catheterize to avoid the build up on my kidneys, which will damage them more. (Thankfully, the damage from lupus on my kidneys is minimal at this stage, with some proteinuria.) My blood glucose has also not been great, so he told me to keep on the lookout for symptoms of early diabetes, whose risk is increased by lupus anyway. I’ve had a lot of incidents with symptoms of hypoglycemia so I will be vigilant.

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Urology appointment

I’ve had bladder issues for a while now. I’m notoriously bad at keeping track of time in any context, but I know a few months ago, it had been at least a year as I had mentioned it to my rheumatologist. It seemed to be just another symptom I had to deal with. Things worsened over the year, and so recently I got a referral to urology to get to the bottom of the issues. My doctor was concerned that I was having such a tough time so young, as he would expect symptoms of this severity in someone much older. (Then again, that happens quite a bit with diseases like lupus, doesn’t it? Haha.)

Mainly my issue is feeling the urge to urinate a lot, but then when I actually get to a toilet, nothing comes. Sometimes I am there for an awful long time trying to go as my bladder feels very uncomfortably full or sore, but it’s often just a little dribble every few minutes, or nothing at all, or I finally manage to go after feeling like I can feel the urine inching along very slowly along the urinary tract. Often, when it does come, it’s in spurts rather than a steady stream. When it flares up to its most intense, I can void fairly small amounts many times an hour, probably six or seven, so not as severe as I know some people with bladder issues have it, but very frustrating as I am dealing with the discomfort and pain of a full bladder all the time and can’t relieve it. Some TMI perhaps: I keep a bucket upstairs during the night for times when I’m going so frequently; it’s not easy for me to go up and down the stairs anyway, never mind so often. It’s very hard trying to get to sleep as well when you feel you need to pee so desperately. I’ve had many urine tests but they all come back clear.

I finally visited the urologist yesterday. I had been afraid that when I went, things wouldn’t be too bad (as can often happen when you have appointments for symptoms with a disease that can vary a lot from day to day), but actually, it was even more ridiculous than usual! I was to do a flow test before seeing the urologist, which should be a “simple” thing of peeing in a special toilet that can be moved up or down as you need it, and you can use a commode-style seat over it if you need. I spent about ten minutes in there the first time, before telling the nurse it just wasn’t happening, although I’d been happy on the way up because I felt like I needed to go (and hadn’t been since the morning). She gave me some water to drink as it’s not too rare an occurrence that someone can’t go. I had literally eight plastic cups of water, spent about another 15-20 minutes across two more trips in the toilet, and still nothing. I was meant to have an ultrasound after the flow test to see if any urine had been retained.

The nurse was great, and she asked the urologist if he’d see me now without the flow test results. He did, and did an ultrasound anyway, which was pretty uncomfortable pressing down on a very full and tender bladder! That and my intake/output chart didn’t bring up anything particularly abnormal. He explained to me a few things he suspects might be the case, such as bladder stones. I guess he thought it was reassuring when he mentioned cancer to say that he thought it unlikely as I’m young and have never smoked, but to be honest, it hadn’t even crossed my mind so it was a bit unnerving to have him mention it in the list of possibilities so casually. (A colleague of mine was recently diagnosed with cancer when no one was expecting it to be the result of the investigations, so it’s quite fresh in my mind!) However, both I and the urologist are pretty convinced it’s interstitial cystitis. As it’s an inflammatory condition, it is comorbid with various other autoimmune diseases, including lupus, of course, as well as some secondary conditions I have, such as Sjögren’s syndrome and IBS. It fits my symptoms and seems the most likely culprit.

The urologist doesn’t want to start me on any medications for my bladder yet until I have a cystoscopy to see what’s going on. When I go to the hospital for that, I will have the flow test repeated and finally have the ultrasound to check for urine retention. I’m hoping we get some answers from the cystoscopy, which I’m sure I’ll blog about at the time. The urologist was fantastic and very reassuring, including patting my hand, haha! Happily, I will get to see the screen as the cystoscopy is done, which is perfect for an anatomist, right? 🙂

Anyway, currently I’m off to try to pee, haha!

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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)

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I’m still around!

Whew, where to even start? Things have been pretty busy since I last wrote here–and as usual, I definitely didn’t intend to be away from this blog for as long as I was! I definitely need to update my symptoms and medication pages here, and I’m thinking that I’ll probably forget something fairly important to mention here in my updates!

Uni
The main thing is definitely uni! I finished my undergrad in anatomy about three years ago now, and have been at a bit of a loss as to what to do next because of my health. I was quite a bit healthier during my undergrad–I didn’t use my wheelchair, for example–and so in the interim, I’ve had to deal with things getting quite a bit worse. Anyway, a few months ago I applied to do a Master’s in biomedical science, but was inexplicably rejected for “not being qualified” when I definitely was. A few weeks later, and I’m sure it was weeks, my friend, knowing my aversion to phones but knowing that I’d have more chance to resolve it during a phone call than an email, got me to call up and see what was up. As it turns out, they were really confused as to why I’d been rejected on that basis, and got the course director to reconsider my application. Well, he did, and I’m in!

So, the next big issue was sorting out getting my motorized wheelchair, as the uni is about 50 miles away, thus I’d be going alone without any family member to help me. As I can’t self-propel outside as a rule–and even struggle inside–if I didn’t get a motorized chair, I simply wouldn’t have been able to study. But more about that in the next section! I was also panicking about finances; we’ve never had a lot of money and my parents went bankrupt putting my twin sister and me through our undergrads, as we were the first in the family to go to uni. Because I am only studying part-time, at least the tuition costs were spread across two years. While I thought I’d manage the first year’s costs, I didn’t know how I’d manage the second year’s or what I would do for living costs, commuting costs, etc. (All these people who say to poor people “just go to uni and get a better job and break out of your social class”?!)

Yesterday I got the most amazing news: I have been awarded the tuition scholarship I applied for, which will cover all but £500 of my tuition. We were ecstatic enough, but what had my sister and me screaming was that the organization also awarded me a bursary for living costs! Such a burden has been lifted from my shoulders and I know I am so blessed.

Wheelchair fundraiser
I think I had posted here about my fundraiser for a motorized wheelchair. Friends, family, and strangers have been so generous and I have been very touched. As I got closer to my goal, my family and I set up a local cycling fundraiser with half of the proceeds going to LupusUK and half to my wheelchair fund. Disappointingly, we didn’t have as many riders as was planned, so it ended up more or less just the family, but it was great fun and we made over £300 for LupusUK, so I am very happy! If I post any photos, I’ll let you know.

So, this week I was able to go for my assessment to customize the wheelchair before I order it and I’ve now paid the deposit. It should arrive in about three weeks, upon which I’ll pay the rest of the costs. Happily, we’re only about £100 off now and I’ve had some friends offer to pay when they get their pay checks. I can’t even explain how ecstatic I am. The thought of being able to leave the house on my own again, without having to rely on family, without damaging my joints, particularly my shoulder, any more by self-propelling… It’s just wow.

Health
Finally, of course, health. The biggest news is that recently they found patches of inflammatory damage in my lungs so this week I went for a CT scan so we can see the extent of it. In the last few months, my breathing issues have been quite bad, so I can’t say I’m too surprised, but of course I’m hoping the damage is quite minor. Otherwise, I’m waiting on a referral to urology for a cystoscopy because of bladder issues that are driving me up the wall! My doctor is very surprised that it’s at this extent in someone my age (24). My rheumatologist has diagnosed “sterile cystitis”, which I need to confirm if she means interstitial cystitis (I imagine so), but in any case, the cystoscopy is to check for any ulcers (hopefully not!) and just to see what’s going on in general.

I did have my rheumatologist confirm that my “joint hypermobility syndrome” is indeed Ehlers-Danlos type 3 (by medical consensus, they are the same diagnosis, but I’ve heard it depends on the professional who diagnoses as to what precisely they mean sometimes!). So I’m now an official bendy. Actually, EDS3 makes sense of some of the symptoms we’ve just said “blame lupus”!

Re autism, I have been in contact with my local services, who have offered to help me through the process of a formal diagnosis. I am very apprehensive, despite agreement from various of my doctors including my psychologist that I am autistic. I have been interacting with the autistic community particularly on Twitter, where those with self-diagnosis are welcome and more common than I’d thought. The more I read about autism, it’s like finally finding myself and coming home, but I am terrified of that being taken away from me, although the professional validation will help me, I think, as every so often I swing from being 110% sure and then thinking am I really “autistic enough”? So that’s still ongoing, and I’m hoping to get advice from the disability service at uni too. My main reasons for wanting a formal diagnosis, apart from personal validation, is possibly needing accommodations in school or work, and access to local services. Otherwise, I think I’d be content. Because of my health issues though, both physical and mental, I am also wary of family and friends just thinking I’m a hypochondriac despite autism explaining so many of my idiosyncrasies that they have noticed over the years, so a formal diagnosis would also give me more confidence to disclose to more people in my face-to-face life.

Anyway! I think that’s enough for this post. I must promise to keep updated more often! Generally, I’m still getting on with my hobbies and still volunteering with RNIB and loving it! You should hear from me again soon! (Someone hold me to that, haha!)

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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!

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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.

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Inaccessible bus service

So, I’ve been building up to this post for a while now, since the local bus company in my town thought it appropriate to exchange an intercity bus link between two hospitals, a spacious bus with a low step onto it and with multiple spaces for wheelchairs, Zimmer frames etc., to a barely accessible coach with only two accessible downstairs seats, stairs about a foot high each to get upstairs, when it’s a service that only runs once an hour.

Since I started volunteering with RNIB in the hospital in the next city, I’ve used the intercity hospital link bus every week to commute. It was so convenient for various reasons; my local hospital is just up the hill for me, so it’s not far to go to the bus stop; there’s enough space for me to stay in my wheelchair if I want and also for others in chairs or with frames or buggies and so on; getting on and off the bus was easy for me as it was a low step, so I could get out of my chair and gently bump it up, or stay in it and have my sister or mum (if they have dropped me off) or the driver get me on. It stops at the hospital in the next city so I don’t have to travel far to get into the department. For a few weeks, it was absolutely ideal.

One day my mum took me up and it was a different bus there altogether. Instead of the style of the local city buses, it was a double-decker coach with a different route code on it. I asked Mum to ask the driver if he was replacing the hospital link that day and he informed us that it didn’t exist anymore. Basically, a coach service with a route throughout most of Scotland had been changed to include this route. The company has lauded the coaches because they have better Wifi and comfy chairs… Yes, the seats are much comfier, I’ll grant, but I’d rather have a bus I can access rather than a padded seat… And I say this as someone with impacting hip joints that give me a lot of pain on sitting down!

The coaches that have been used 99% of the time, and I think this is the new type and the exception was an older one, has quite a big step to get onto in the first place even with the suspension lowered. Then there’s the backrest for the wheelchair right next to the driver’s box and so there isn’t a lot of space to get in and pay. The only two accessible seats without taking stairs are situated directly behind the driver’s box; there’s not much space in them at all, especially when you have sticks to deal with. I was traveling with a man who had a prosthetic leg one week, and there was not enough space for him to have his leg up; he had to sit on the side with his leg hanging into the aisle. Also, the floor space is so high that a man who I regularly sit beside on the journey can’t actually lift his legs high enough to sit straight ahead, so he too has to sit hanging off the seat. On the older coach, there were stairs to get on regardless, and to get on in my wheelchair, I had to take the very slow chair lift, which was frustrating and quite embarrassing. Everyone’s waiting to get going, and we have to wait while I board the bus and have my chair strapped in and so on. Whether people are thinking along those lines or not, I did feel like a spectacle and it was fairly humiliating. Disabled people just want to get on and off the bus reasonably quickly like anyone else.

With the service only running once an hour, it means that we can afford even less to say “Oh, it’s o.k., I’ll get the next bus.” I’ve actually had to go up the stairs at least twice. It was very difficult, painful, and awkward. The first time I was already in the access seat next to an elderly man, but a woman came on with a shattered ankle, and I felt that out of the three of us, I had the best chance of getting up the stairs. It was either that or say to the woman “No, sorry, you’ll have to wait another hour for the next bus”. I know I didn’t strictly have to, but I didn’t exactly have a good choice either way. The second time I think a couple was already in the seats, and I didn’t want to presume and ask them to move. However, a few stops later, they did come upstairs for someone else to get the access seats, so maybe I should have asked, but I don’t know if they only came up as I had because they felt someone else needed it more. Unfortunately, I’m getting to the point where I am just going to have to tell people sorry, I can’t move. It’s none of our faults but someone has to lose out.

I have to say though, the drivers have been faultless. Whether making sure I’m managing to get on board and in the seat, loading and offloading my wheelchair in the luggage space (which I do every time now, as frankly it’s just easier and I realize I’m lucky to have this option because I can get out of my chair, which some can’t), or getting me on the chair lift as the one driver did. Fellow passengers have also generally been so helpful; when I get out of my chair and leave it folded outside, people sometimes realize what’s going on and offer to put it in the luggage hold for me, or someone in front of me will let the driver know. I’m getting to know quite a few of the drivers now as it’s the same crew on shifts and I guess I’m fairly distinctive as passengers go!

I know many of the drivers have not been happy about the change, and they do realize how hard it is for passengers with mobility issues. Unfortunately, they can’t really discuss it in depth with us passengers as they could lose their jobs. A few weeks ago, someone told me that there was going to be a meeting about the coaches because so many passengers had complained, but unfortunately it seems nothing has come of it. A few days ago, I read that the bosses aren’t worried about the concerns as they’re making more money on this service than ever… Lovely ableism there of dismissing the concerns of disabled people trying to access a bus to a hospital because they apparently have enough abled passengers paying for comfy seats!

I just feel very dismissed. It’s despicable that a bus company thinks it’s acceptable to have only two accessible seats on an intercity hospital link bus that only runs once an hour. It’s used a lot by pensioners as well. It’s utterly ridiculous to assume that only two people with mobility issues, visible or invisible, will need this bus at any one time. And frankly I don’t have many polite words for the company that thinks the concerns aren’t valid or worth acting upon because abled people without access issues are managing to use the bus… Unfortunately, I’ll have to deal with it each week in the foreseeable future and hope that greedy companies will start listening to our needs. It doesn’t alienate abled passengers to include access for disabled ones, but it certainly alienates us by restricting our access and not listening to our complaints. Life in an ableist world, eh?

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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.

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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. :/)

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