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. Β¬_Β¬ 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.

The issues I feel surrounding “ice bucket” and similar “awareness” trends

Many of you have probably heard about this new “ice bucket challenge” trend, which is to apparently raise awareness for amyotrophic lateral sclerosis, or ALS. Similarly recently there was the “no make-up selfie” campaign for breast cancer. I’ll make this point here at the beginning: 1. This post doesn’t concern everyone who did the challenge and donated or shared information to raise awareness. 2. I’m not ungrateful for the money that these campaigns do raise. I’m not just shitting on people who did this, but hopefully some will see the issues behind it that some of us in the disabled community finds and finds uncomfortable. Others do share my views, but everything in this post is written for my two cents on the topic.

I think my first point is that many people are doing this under the guise of “raising awareness”. Naming a disease does not contribute much to awareness, which is so much than knowing a disease’s name and that it exists. If you’re fundraising, then call it that! Fundraising itself isn’t a bad thing, but it’s not the same as raising awareness. For the breast cancer selfies and various other breast cancer campaigns, what does naming the disease tell anyone? I know many people *did* share information, such as information about the disease itself but also how to check your breasts for any changes and so on. This is good! That is raising awareness! Not everyone who has taken part in these trends comes under the group of people simply taking part in a trend and feeling like they’ve done something.

But some do. Day in, day out, we disabled people deal with so-called allies like this, people who make out they’re “on our side” and are fighting the fight with us, but when push comes to shove, they’re nowhere to be seen. When we tell them that something they’ve said or done is problematic, unlike a true ally they switch off from the conversation and take offense, instead of listening, apologizing, and doing all they can to change the way they think about that particular aspect. They are in it for the “ally cookies”; they do a little bit, feel it’s enough, but then when they’re called out, apparently one disabled person whom they saw as rude is enough to have them give up for the entire community. Not exactly an ally!

There’s no doubt that not everyone doing these trends are ableist or false allies. I’m not saying that, and if you think I am, you might as well stop reading right now. In case anyone would like to derail this, I will state here, in bold, that these campaigns *do* raise both money and to a smaller extent awareness. But to me there are broader issues. Most people, if not all, doing these trends have good intentions, but there’s something in there of people getting their kudos for doing something against diseases but then not actually giving a shit for its sufferers right here, right now. There is a focus on treatments and hypothetical future cures–which of course we all want anyway–but then the same people don’t care for the disabled community as a whole around them. And I think that’s why these things make me uncomfortable. I don’t doubt there are people who have done this challenge who have or will still go on to make fun of Stephen Hawking, who has ALS. Many of us in the disabled community will tell you that while we are disabled by our diseases, issues of ableism make our lives more difficult in many aspects, so there’s something off, to me, about people joining these trends to do their little bit for these diseases, but then continuing on with gross ableism and not actually caring about sufferers or the disabled community beyond that.

If you think this is me not caring about research, then you’re wrong. As both a lupus sufferer and an anatomist, I know how vital research is. I know it’s not just millions of pounds going into vague research ideas about a cure that may or may not exist. My issue is not with the researchers, nor the charities raising money for research, nor the people who do care beyond the trends but who also have contributed to them. If you’re still getting this message, I can’t help but feel you’re plugging up your ears saying “la la la” because you feel you’ve done a good thing by contributing to fundraising and awareness; you have. Believe me, I’m fully aware that there may be no cure for lupus, but I know that research is about more than just a possible cure. If there was a trendy campaign for lupus, I’d be grateful, both for the money it raises and for the awareness, even if small. I’ll spell out again that I’m not saying these campaigns are useless, nor that they don’t do what they’re designed to do, again, even if lacking on the awareness side. The issue to me is people thinking that they’re not ableist or that they’ve done all they need to do by joining a trend and giving a few pound to charity. I’m aware we can’t do everything, we can’t campaign and share information and fundraise for every possible disease.

It’s not that the research shuns the living community in favor of a hypothetical cure. It’s the false allies who do, and it’s the false allyship that I have a problem with. It’s a sad fact of life that disease research needs so much money–big pharma etc. is another issue altogether. I guess this whole thing is less about the trends themselves and more about false allies, or people who don’t actually care about ALS but who just want to jump on the latest trend. <strong>If this doesn’t apply to you, then I’m not talking about you.</strong> I’m not saying we don’t want your money either–hell, I’m grateful for research money wherever it comes from, as, cures aside, research leads to new treatments that greatly improve the quality of life for people suffering all sorts of conditions. But remember that supporting the disabled community goes far beyond giving money for research, and if you don’t care beyond the faceless name of a disease and its possible cure, definitely if you’re ableist in any way and would use the fact that you did donate to derail all of these arguments, then just know that you’re not helping the community as much as you think. In any social justice fight, I’m aware that we do what we can and often that isn’t a lot, but I won’t stand for the way so-called allies try to force us to feel grateful for a tidbit, for scraps, while they continue ignoring the disabled community, people who basically say “but I said something good against ableism, you can’t dismiss anything else I said”, and believe me, I’ve had those. It’s not a case of saying everyone has to suddenly become advocates of every disease and that the general public doing a little bit here and there isn’t effective. It’s a case of the people who shoot us down, derail us, basically tell us we’re wrong about our own experiences while claiming kudos because they fulfilled some trend for some disease at some point.

Caveats. (Fairly intuitive, I’d think, but there’s always someone who misses chunks and will shoot me down for being ungrateful.)
1. I don’t speak for all of the disabled community, obviously, and not for those with ALS.
2. Any offense on my part is not geared toward everyone who took part or everyone who is grateful for these campaigns.
3. I’m not saying we can’t all do our little bit and dismissing you because you’re not a full-time disability advocate.
4. I’m not saying that everyone who messes up and says something ableist is a false ally.
5. Finally, what I call false allies is not always people purposefully just jumping on bandwagons and wanting kudos when they know they blatantly don’t care. Often they have good intentions but again and again derail and silence disabled people on disability and ableism in general in favor of their own views.

Some links about ALS:
http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis
http://www.alsa.org/about-als/what-is-als.html
http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm
http://journeyonwithroyce.blogspot.co.uk/
http://thealsexpress.com/my-blog/
http://health.ucsd.edu/specialties/neuro/specialty-programs/als-clinic/als-resources/Pages/meet-patty-blake.aspx

Recent doc visit + busy week

From last night’s post, it possibly seems that I’m in a worse place than I am. I’m still absorbing the news, and it’s also hard when suddenly mental illness and suicide are thrown into the spotlight like this. I’m doing o.k. just now, feeling that I’m wobbling on top of the slippery slope; it might happen, it might not. So I wanted to give a general update on my physical health now.

Last week was pretty busy for me lately as my health’s worsened. I think I did three or four days in a row out. Monday the 4th was my nephew’s 2nd and my dad’s 52nd birthday, and we had a party in a room at a local pub with a bouncy castle for the kids. Although I didn’t do much physically, it’s quite striking how much a day out can take out of you! Even just using sticks to get around is so taxing. I managed to volunteer the next day too, which was great. I think it was a few days after that I finally snapped and tidied up my bedroom; my sister was changing to half-day shifts that week, but for some reason I just decided I couldn’t bear it any longer. Big mistake! I was soaked to the skin with sweat, popping painkillers, ooh, I felt it badly later. The day after or so I went grocery shopping, thinking because I’d be in the chair it wouldn’t be a big deal, right? Ohhh! Maybe one day I’ll finally learn! I used the store’s chairs, even though they’re not as uncomfortable, so that we’d actually have space in the car for the shopping instead of my own wheelchair. But even the walk with the sticks into the store… ouch! At least I made progress with the bedroom, right?! As I share with my twin, there really isn’t enough space for two people’s stuff, so we’re trying to organize everything, but it’s difficult as there’s just no space. Hopefully this means I can sort my desk out soon though and have a workspace again.

I can’t remember when I went to the doctor, but at least I got everything I needed sorted out. I got my pills changed over from co-codamol to dihydrocodeine, as I just feel the latter works better for me; I wasn’t positive whether it was to co-codamol causing the nausea, but I do tolerate dihydrocodeine better, I think, also it means I can still use the paracetamol as a baseline, even at times I don’t need the opiate dose. Fingers crossed it works out better anyway; the co-codamol wasn’t too much of an issue, though. I’m actually still finishing some of it that I have left. And, because taking opiates regularly and long-term slows the bowel, I got some laxative sachets just in case; recently, I had the worst, worst constipation I have ever endured–pain sweats, agony, thought I was going to faint, the lot! Luckily(?), because of my IBS, it’s not something I have to deal with too often as I usually have the opposite problem of diarrhea! But it’s nice to have the sachets ready just in case. I explained to him about my sinuses, and I’m trying a steroid spray for two months, and we’ll see how it works out. I can’t say I’ve noticed a dramatic difference, but my sinuses had been relatively calm around the time I started with the spray anyway.

Nothing much else to report! I’m getting on with transcribing, translating, reading and accumulating too many books. Very soon I have to start putting everything into motion to getting back into uni for my masters in 2015. And soon I also want to start again in earnest on a physio plan, something small enough that I can manage consistently.

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.

My views on “inspiration porn”

(Please note that whenever I say “able-bodied”, that doesn’t include those with mental health issues. As a sufferer of mental health issues myself, I advocate the view that mental illnesses are physical illnesses that just happen to affect mental functions rather than directly physical ones. Both can be incredibly disabling, and certainly I have days where it’s mental rather than physical issues that disable me more.)

It had been months since I worked in my second charity shop, the animal charity, so when I went yesterday, it was pretty much all new people there. Usually it’s young people, often school pupils volunteering for their Duke of Edinburgh Awards, which is an award for young people taking in part in various things, one of which is volunteering. As opposed to the other shop, the homeless charity where I’m pretty much the youngest but one, in the animal charity shop I’m one of the oldest. I get on with all ages, really; I do find it easier to get on with older people, but it’s perfectly fine with the younger ones too. I usually end up asking them about school, haha.

Anyway, at some point the conversation ended up about me being able to get around in some capacity–I had my sticks, but I was mentioning how much easier my chair has made things, except it’s as independent as I would have liked, partly because my upper body is also affected by lupus (oh, how much easier would the chair and sticks be if it was just my hips that were the issue?!) and partly because my lightweight chair is often pulled all sorts of directions with the slightest incline in the pavements! I mentioned by the side that I have lupus when explaining this issue that it’s not just a case of having awesome upper body strength and so getting around pretty easily.

Not too long into the conversation, one of the boys said I deal really well with my health issues and he’s glad I’m so positive about it. I know a lot of disabled people resent when able-bodied people say this to them, for various reasons. There’s the whole issue of “inspiration porn”, where disabled people are put onto pedestals for able-bodied people to say, “Wow, if he can do it, then so can I”. I too somewhat resent the impersonal side of using disabled people as a group as inspiration, but I’m personally happy when someone tells me I deal really well with my condition.

I try to remain upbeat and optimistic, and find the balance between having a “normal” life without sweeping disability under the carpet; actually, I find that my life becomes more normal and disability less invasive when I do have aids like the wheelchair–while it takes a while to get into that mindset of being disabled, having people go out of their way to help, being treated differently, whether positively or negatively, having the chair for example means that I can do on trips out, and so on, and I am in more of a position to help myself and manage more without being hindered by my disability. When people recognize my optimism, it makes me feel pretty good, even though I think they’re often a bit OTT! πŸ˜›

I think it is different when it comes from friends rather than strangers. I have had friends give me the whole “you’re so inspiring to me the way you deal with your disease and hardship”, and I don’t feel condescended in the same way as “inspiration porn” makes me feel; I think because on one hand people are genuinely responding to your personal situation whereas in the other, strangers are using you as a prop to make them feel better about their own lives, to use the disabled community to inspire and help themselves rather than us. On one hand, I like the acknowledgment that we go through a lot just to live our everyday lives; I know many disabled people resent the idea that we’re so amazing just for going about normal lives, but actually, I think it’s good for people to realize that living an everyday life is difficult when you’re disabled and can require a lot of strength, physically and mentally. I believe in celebrating what seem like little things to able-bodied people, like having a day out, having a shower, managing to go grocery shopping, all these things that people take for granted. Because for me it is a struggle, and by acting as though we are all on the same level living our normal lives is, I feel, dismissive of the everyday challenges that disabled people face, that able-bodied people take for granted.

As with many things, there’s a right way and a wrong way to say the same thing. I guess it’s hard for me to explain what the differences are, but there is a stark difference between saying to a friend that you admire them for facing challenges that their disability brings, for having determination, and by putting disabled people in general on a pedestal as “brave and heroic” for living normal lives. It may be inspiring that we have the motivation to continually push through tasks that able-bodied take for granted, but certainly it’s rarely brave or heroic! Most of us disabled people are living pretty normal lives, and while as I said above I welcome the acknowledgment that our everyday may involve more struggle, I resent being “othered” all the time by comments like that. I feel accomplished when doing some “little” things, as I also said above, yet I can barely described how patronizing it would be for being told “Congratulations”, “Well done”, or “You’re so inspiring” for having a shower or getting into town for the day. And on the other side, if it’s a big achievement in the eyes of both disabled and non-disabled, then giving a disabled person praise for the “being disabled” part rather than the actual achievement can also be dismissive and othering. Often our talents and achievements have little to nothing to do with disability, and we’re thus at the same level as able-bodied people, yet put on a pedestal for the same achievement.

The best way, in my opinion, to share a small accomplishment with a disabled family member or friend is not to excessively laud us nor to sweep it under the carpet, but simply to listen to us and support us if we say we can’t manage something else, not to be dismissive and think or say, “Is that it? You only went round the shop…” I have pushed myself so far so often for the sake of other people because I worry that if I say no, they judge that based on their own physical condition and think you’re just being lazy or some other clichΓ©. Because they have, so many times. With a big accomplishment, simply acknowledge it for what it is. Congratulate a disabled person the same way you would an able-bodied person. If I get a book published, what difference did my disability introduce to that? We have ideas and thoughts like any other person; we can contribute to many fields without disability being an issue.

As much as I accept the compliment from people that I’m very optimistic about things, I invariably tell them that we don’t really have much choice! It’s either get out a live life or sit in a dark room all day feeling sorry for ourselves. Many people say they wouldn’t cope in my situation, but my guess it that most would. It’s hard to separate what was the grief for the loss of my health and what was depression at the time, but I got lupus at 15, and went through some dark times coping with it. My issues with depression started long before this, but what better than an incurable debilitating disease to trigger an episode, right?! But grief is a process, and you get through it. Seven-eight years later, how could I possibly still be feeling sorry for myself to such an extent every day? How could I be constantly complaining every moment, thinking “Why me?” every day? That’s tiring. It’s demotivating. Eventually you get to a point where you just cope. Disability makes my life harder, yes, but it doesn’t write it off! So the implication that the average non-inspiring, non-heroic disabled person is just wallowing in self-pity and bitterness all the time is insulting.

Of course we all still have days where we do feel sorry for ourselves, feel somewhat cursed and think, “Why me?” But so do able-bodied people! It’s astonishing how the pendulum swings so dramatically both ways concerning disabled people; if we cope, we’re heroic, brave, inspiring; if we don’t, if we complain, often if we merely mention our conditions, symptoms, and so on, we’re pessimists, we have bad attitudes, if we just “thought good things we’d cope so much better”, say the able-bodied people who whine incessantly with a cold. I do find it astonishing that a lot of the time, able-bodied people can complain a lot about relatively minor bodily issues, but disabled people mentioning a more severe issue at any point can be seen as “whining”, “showing off”.

This is probably a bit of a garbled mess! And possibly some able-bodied people are reading what seem like contradictions and thinking now they don’t know what to say to a disabled person at all! Anyone can be inspiring, whether disabled or not, but it’s insulting to consistently “other” disabled person and find them inspiring for the mere fact that they are disabled. If someone’s an athlete, or a top scientist, or a best-selling author, of course you can be inspired by them whether they’re disabled or not; but admire them for their achievements, not for being disabled. Without meaning to denigrate anyone in a similar position, but if someone worked a checkout in a shop, lived a pretty normal life with their family, friends, nothing spectacular, then you might see the issue with suddenly proclaiming such a person a brave and heroic inspiration. What have they inspired you to do, to be? I think this is the issue. You admire a disabled person for cutting-edge scientific research just as you would a non-disabled person, you admire someone for overcoming severe anxiety to follow a dream, you admire an author for their gripping plots, you may admire someone for getting through school with good qualifications in spite of missing many lessons due to health issues. But you shouldn’t admire them for being disabled.

I feel this contribution to the “othering” sets up disabled lives as something so diabolically horrendous that able-bodied people feel they could “never like like that”. Now consider someone saying that about your life; sure, it’s hard at times, whose life isn’t? But to suggest it’s not worth living? To suggest that you are a hero because you do live it–against your will, too; we don’t choose to be disabled–is dismissive and insulting. People say they would “never cope” in this life–actually, as I said, most people would. For people who became disabled rather than being born disabled, we have had to adapt from being able-bodied to being disabled, and we cope just fine, because, although difficult, our lives are not an awful, torturous, dismal existence every day just because we have some more struggles. The main point from this babbling is Listen. Listen to your disabled friends and family when they tell you something is insulting, something is ableist; listen to the voices of disabled people in media and take in their message; read blogs about inspiration porn and try to establish how you can express your inspiration from disabled people in a less-insulted way. If you obstinately stick to your “inspiration porn” and say “But I dooo find it inspiring; I don’t care what these disabled bloggers are saying”, then you’re part of the problem. As long as you’re willing to listen, learn, and change, then you can contribute to changing ableist attitudes in society. If you care enough about disabled people to use them as tools of inspiration, then I would think you’d want to listen to them and stop these attitudes that insult and dismiss us across the board.

Volunteering

I missed the opportunity on Sunday to make new goals, but I do plan to start again next week. Even though I’ve been still working on the things I put in my lists, it feels good to have that extra push. However, today, I went into one of the charity shops I town where I volunteer. I used to do 4 or 5 hours when I managed regularly, but now I have only been a few times this whole year and while I’m easing back into it, I do 3-5. Mum said today, “There’s not much point going in at this time!” But until I get some fitness back up, particularly following this flare, I am mostly sticking to shorter shifts.

I got the bus down, which involves a fair bit of walking; in the last couple of weeks, my few outings have been with the wheelchair, so it was nice, albeit difficult, to get some walking in today; the bus stop directly across from my house used to be the stop that takes you straight into town, but now it’s up a hill across from my house, so it’s not too long but uphill. From town, it’s just a couple of streets to the shop. It did mean I was pretty exhausted and hot by the time I got there in spite of the rain!

It’s always nice to see everyone again. When I started volunteering, it was in part for something to do, but a large part was to boost my social skills. (As I’ve said before, some of my doctors suspect I have Asperger’s or a similar condition, which I agree with, but I don’t have an official diagnosis.) It’s also nice to meet people in my city of all ages, because the only people I really knew upon moving back from Glasgow were people I went to school with who hadn’t also moved away–so basically, I had no friends here!

Alas, barely half an hour in, I managed to somehow cut my finger without noticing, getting blood everywhere, on a t-shirt I was folding for the customer! She was lovely about it, and took it anyway. I had been about to point out a stain I noticed on the shirt when I realized it was dotted all over me and was running from my finger! It’s quite a deep slit–we’re guessing it was on a paper ticket on one of the clothes, but I didn’t feel it at all and still can’t, so it’s no big deal, although it gave my manager the chance to break out the first aid kit and wrap it all up fancily, haha, which was quite a hindrance! I have a basic band-aid on now, and still can’t feel it.

I was talking to one of the women who works in the office there, so I don’t get to see her as often as the workers in the shop. We were talking about how my health is worse and my plans; she says I’m very positive about it, and should look into disability support for other young people. She was very impressed when I told her about this blog, which gives me an outlet and hopefully some support for people reading. Next week the shop is having an activity day out in a nearby town, so she was telling me that they will sort everything out for taking my wheelchair. It’s just a craft fair kind of thing, but these days I jump at these events to get me out of the house!

While I was helping a customer with the radio she bought, she saw my sticks and asked what my disability is. It was in a way nice that she asked this way, acknowledging that just because I’m a young guy doesn’t mean it’s a temporary injury or whatever. She has MS, so we were talking for a while about our conditions. As she left, we both said things like “Hope you improve”, “Hope things get better”, then kind of stopped and reflected that even we say those things, although we know our conditions tend to get worse anyway and it’s almost a platitude to say, haha.

I did manage to come away today without any books!!! (Maybe that’s mostly because I didn’t bring a bag, haha!) I did buy some buttons for my crochet projects though–I was talking about crochet with the manager, and she’s asked me to do some crochet flowers for our spring display, which will be quite nice. We recently won an award for the Best Shop Window in town joint with Oxfam, which is awesome!

I’ve been treating this blog as kind of a general journal in a way–I don’t know if people enjoy this way, but I miss having a Livejournal for these kinds of posts, so this blog is the replacement! I do want to paint a picture of life in general with lupus anyway, so I suppose these posts have their place. But soon I want to start working on posts of individual symptoms and secondary diagnoses so I can link them up to my diagnoses page. I’m going to recruit my sister soon to take some photos to display my hypermobility, so maybe that’s where I’ll start.

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! πŸ˜›

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. πŸ™‚ 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.

World Lupus Day – useful links

In order not to clog up the previous blog post even more, I decided to post some links separately if people are interested in reading more about lupus.

Wikipedia entry on SLE: http://en.wikipedia.org/wiki/Systemic_lupus_erythematosus
Lupus UK: http://www.lupusuk.org.uk/
NHS page on lupus: http://www.nhs.uk/conditions/lupus/pages/introduction.aspx
Lupus Foundation of America: http://www.lupus.org/

In addition, I want to include the Everyday Ableism website, where you can get awareness of the bad experiences and treatment that disabled people receive in general from others. It can help you realize when your behavior or speech is problematic and make improvements on it.

http://www.everydayableism.co.uk/

Otherwise, there are many many lupus blogs out there, and rather than linking some at the expense of others, I will simply say that they are easily found out there by Googling “lupus blog”.

Thank you!

World Lupus Day

So, today, May 10th, is World Lupus Day, and I thought I should contribute something, although whether it will be beneficial in raising awareness into this disease remains to be seen! I basically want to talk a little about the disease itself, and also then about how it affects my everyday life.

Lupus is an autoimmune disease, meaning that the immune system recognizes the body’s own cells as “foreign” and attacks them as it would germs. In a way it’s like being allergic to one’s self. There are actually a few types of lupus; this post will be on systemic lupus erythematosus, or SLE as that’s what I suffer from. In this condition, there is no limit on which cells can be misrecognized and damaged–as the name suggests, it is a systemic, i.e. whole body, condition. What this means is that the course of the disease can be completely different in two patients, not only in severity, but in which tissues and organs become damaged. This combined with the fact that symptoms are so generalized through the whole body make it a difficult disease to diagnosis; it is often called “the great imitator”, and many people take around 5-15 years to get diagnosed. It took six or seven years for me.

The effect caused by lupus is mainly inflammation, but this can progress to the point where tissues and organs become quite severely damaged, in some cases leading to organ failure, usually in the kidneys, but as I mentioned, it can be anything. I personally have some damage mainly to the heart, bones, kidneys, and intestines, but also issues with my skin, liver, brain… Luckily for me, most organ damage is at the early stages; no failures for me yet! But also the bones, muscles, and soft tissues are affected. Honestly, pretty much everything. I would find it very hard to point out a part of my body that hasn’t been affected even a little by lupus.

The hardest part of the disease in my experience is its unpredictability; not only in severity and differences between patients, but in an individual’s experience. Many people experiences flares, where symptoms get dramatically worse, and remissions, where they become dampened and even almost disappear for some lucky ones! I am in a flare at the moment, which can last from days to weeks to many months. Unfortunately, I don’t experience remissions as such; things are always quite bad for me, just worse in a flare which will usually keep me completely housebound.

Even day-to-day variation can be quite dramatic; when I was still undiagnosed, family and friends would say, “But you were fine yesterday!” In fact, a very common vicious circle can occur in which we have a good day to the extent where we overdo it, and then we have a long period of “payback”, which can be the next day, or in my case, more often a few days or even a week. My doctors have long told me off for overdoing things on a good day, but I tell you, when good days are rare, it’s very difficult not to take full advantage, even knowing I’ll pay for it tomorrow and so on!

Unfortunately this makes it difficult for me to easily live on a regular schedule, partly because as I said, I don’t know how I’ll be day-to-day, but also building any kind of stamina becomes difficult. For “normal” people, they know the tough days just need to be toughed out, and it should go uphill for them as time goes on, but with lupus, overdoing a day can mean a break for so long that you lose what you’ve gained. Also for me, the pain in my joints etc. is not just because I’m unfit, so it won’t necessarily improve with fitness, and in many cases, by pushing ourselves to build fitness, we can do even more damage to our bodies that gets worse, not better, with time. So the balance is extremely hard to find, and after eight years or so, I haven’t found it yet! I don’t know if I ever will.

Another issue with lupus is that it’s largely invisible. People look at you and can’t imagine that every bodily system is under attack. You just have to look at my symptoms list on this blog to see how it starts seeming very much like no one can have so much going on in so many body parts. This long list of symptoms is what makes it hard to diagnose; not only because it’s very generalized, but because doctors can view you as quite a hypochondriac if you say everything is hurting and nothing comes up on tests! It also affects the way people can treat you; even if they know about the disease and what it does, it’s easy for family and friends to forget just what you fight against every day. They forget that just because you aren’t talking about pain and symptoms, that doesn’t mean they aren’t there. This invisibility can also mean bad treatment from strangers who simply don’t believe you’re disabled, or “that” sick. I’m thankful in a way that I use sticks as a sign of my disability, but even then people don’t realize everything that’s going on behind the scenes.

If you’ve come here to learn about lupus for World Lupus Day, thank you for your interest! If you know someone with the disease, be there for them; remember that just because they aren’t showing or talking about their symptoms, there is always something going on with this disease. When you have such a systemic, chronic illness, it becomes natural to act “normal” even with quite bad symptoms. With my heart issues, I often get quite sudden chest pain and fluttering, but often those around me have no idea because I’ve learned simply not to give any outward signs. This is a combination for me of simply time that has passed, of not wanting people to treat me as though I’ll break (which they would, I’m sure, if I made clear everything that goes on), of not wanting to seem like I’m complaining all the time, or, God forbid, bragging. We will often push ourselves through things and suffer for it, even if we seem o.k.

So my final point is don’t take the unpredictability out on us sufferers, least of all because it’s worse for us than for you to have to cancel plans at the last minute sometimes. We have had to grieve for the lives we used to have and even after many years there are still days where you think, “Why me?”, “Why can’t I be healthy?”, “Why can’t I have a normal life?” I get down some days when it hits me that I simply won’t get a break from this. My sister said to me recently that she felt awful for me because, for “normal” people, the thing that gets them through illness is the thought of getting well again; of course, with lupus, most people get worse over time. I’m only 23, and already most systems are affected; a kidney transplant is very possible for my future, cancer risk is increased in general, and death is a very real possibility for lupus sufferers. But I can’t dwell on that, and you shouldn’t either–provide a space where people can talk about the disease and its symptoms without that black cloud, of being able to talk very matter-of-fact without you drowning them in pity. This is why I try to talk about things more openly, because I don’t think it should be a separate dark discussion but an everyday thing for me to be able to mention something about lupus. Many people say we are not defined by our disease–I think I am, and that’s o.k. What we need is for others not to treat us as the disease–bear in mind that almost every choice we make has to be based on it, but don’t treat me as “that friend with lupus”, or, as someone said once, “that guy who’s always sick”. We have normal likes and dislikes, we can have “normal conversations”. Friends and family also have to find that difficult balance of acknowledging lupus and not overdoing it, having too much pity, or treating us as fragile objects who might break at any time. This blog is part of my effort to work together with those who suffer from lupus and those who don’t, opening a dialogue where nothing is “TMI” and we can learn from each other.

Thank you for your time! (Especially as I went OTT as usual; being concise is not a concept I’m familiar with. :P)

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. πŸ˜›

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. πŸ™‚ 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)