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!

How I’m finding things with my motorized wheelchair

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

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

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

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

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

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

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

I knew my wheelchair was falling to bits!

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

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

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

Independent advocacy visit

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

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

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

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

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

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

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?

Conventional success – an unrealistic expectation for many disabled people

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

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

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

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

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

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

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

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

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

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

When will my new 2015 life finally arrive?

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

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

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

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

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

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

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

Fundraiser for my motorized wheelchair

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

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

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

Happy birthday to me!

My followers might be glad to hear that one of my New Year’s Resolutions is to actually post here more frequently! I keep thinking something in my head is not worthy of a blog post, and then end up writing so much on Twitter, which can come out quite clumsy! But I need to remind myself that there isn’t really such a thing as a post that’s too small. 🙂

I have a few ideas for posts, but just now I just want to make a general update, as usual. Unfortunately, I think I’m on the brink of a lupus flare; certainly things have been particularly bad over the last few days, I’ve been more or less bed-bound and I’ve been out of the house only once since Christmas Eve, which was to go food shopping when I should have been in bed! As my chronically ill fellows will know, it’s not always the easiest thing to have regular showers and keep on top of hygiene when you’re feeling rough, and last night I’d been in the same pajamas since Christmas Eve. I did bring new pajamas down to use my last spoons for an overdue shower, but chose to go food shopping instead, because if this does turn out to be a full-on flare, I won’t be able to do either! As I Tweeted, I was dirty but at least I had food! Choices like this are a frequent thing for lupies or anyone with chronic illness, really. We have to pick and choose what we can manage, and often I have to “sacrifice” body parts for the sake of others, e.g. injuring my shoulder more using the manual wheelchair to give my poor hips a break. I’m quite envious of those lupies who get remission periods, but unfortunately I’m not one of them!

I’m still volunteering in the charity shops, but it’s getting difficult. I often think “It’ll be fine; you can sit down at the till all day”, forgetting just how strenuous it is to fold and pack people’s purchases. The staff are absolutely fantastic and give me as many breaks as I need, but still. It’s also tough with Sjögren’s syndrome to interact with customers all day. I’m tired of gum, but water on its own isn’t enough! In the New Year, I’m taking a few weeks’ break from the shops, which will be unavoidable if this does become a full flare.

Thankfully, I’m doing really well in the admin officer job for RNIB (Royal National Institute for Blind People); however, I do have to commute 20 miles to the next city, and as I’m on my own, it’s a hard choice between propelling myself in the manual chair or taking my sticks. Also, the hospital link bus that I was taking has been canceled and replaced by a coach service very inconvenient for the disabled and the elderly, who comprise most of the passengers of the link bus. But that’s another post altogether, which I will hopefully write in the next week or so. But the work really is a lot easier for me, being computer-based, and the women I work with are so lovely. I also enjoy meeting the patients. I’ll be keeping this up while I take a break from the shops, health permitting! It’s easy enough for them to replace me on the till, but I’m the only admin assistant!

CN: mental illness, self-harm
Mentally, I’m not sure how I’m doing. Well at this current moment, but I’ve been a bit all over the place the last few weeks. I relapsed a few times with self-harming, and I don’t know if I’ve worked it out of my system again or if it’ll be another full blown relapse. I’ve been finding things easier to cope with because I have a great support system in many of my Twitter friends and my twin has been amazing as usual. I’ve been having anxiety about a few things, mainly PIP, getting the money for my motorized chair, and sorting out uni. I’m not usually anxious but recently I almost went into full panic that none of this was going to work out. It was a strange time for me. I’m just taking each day as it comes, to be honest, and not guilting myself over the self-harm.
END: mental illness, self-harm

I don’t think there’s much else to tell. Today’s my 24th birthday, but I’ve never really enjoyed New Year’s Eve! I’m mainly teetotal and only usually have a few drinks at this time of year. I’ve a bottle of rosé from Christmas and a red wine, and I’ll probably have most of that left tomorrow! I hate parties and get nervous around drunk people. I think my little sister wants to swap birthdays with me! Thankfully, I usually just do a family thing with my parents and the grandkids, on the computer, reading, writing, the usual, with some food. For New Year’s Resolutions, I mainly just want to organize my life a lot more, my bedroom, my inbox, my files and folders, and make sure I do some hobbies more often, such as art, playing keyboard, as health permits. Silly me is also planning to add new languages to my studies!

That’s about it; I’ve had to take so many breaks typing this post as my arms are not having it! I see my rheumatologist next month and will hopefully go another step toward sorting my sinuses. I hope everyone who celebrates had a great Christmas, happy holidays to all, and a Happy New Year! See you in 2015. x

#SamaritansRadar Twitter App – my thoughts on why this is extremely problematic

(CN: discussion of mental health, suicide, elements of self-harm)

This will be another mental health post, this time centered on the Twitter app that mental health and suicide prevention charity Samaritans have launched, called Samaritans Radar. You can read about this app on their website in this link: http://www.samaritans.org/radarpress The basic premise is that a user can sign up to the radar, and it will then scan the Tweets of people they follow on Twitter, flagging to the user if certain keywords are used that imply mental crisis or suicidal ideation. The user can then view their friend’s Tweet and make a judgment call as to whether this requires further action. Sounds good, right? Friends can look out for potentially vulnerable friends and step in when it seems they’re having a crisis. Here’s what I and many fellow sufferers of mental health conditions find problematic about this app. Now, I don’t think I have anything new input that hasn’t already been said by others, but I would like to have my say and add my voice to those of us protesting the issues around this app. I do want to throw in here in case people don’t read to the end that Samaritans is a fantastic charity and offers a lot of great help to people in very acute crises. For many people this has meant they were able to resist a suicide attempt when they might not have otherwise. I’ve read that the app is in no way associated with the volunteers who run the 24-hour phone service, so please do not feel discouraged about contacting them if you need to.

Many of an individual’s Twitter followers are strangers, not friends
The app is based on the Twitter list of the user, not those who may be in crisis. This means that, should I mention suicide or self-harm in my Tweets, any stranger who follows me and also uses the Samaritans app would get an email about this. I find this idea very uncomfortable and invasive, that followers whom I don’t even know would get specific emails highlighting the app’s perception of my mental health state and prompting this stranger to do something about it. You may be thinking that support must be good whoever it comes from, right? Well, no, not really. Support can come from myriad sources, but in general, if I were in a suicidal frame of mind and in acute crisis, the type of help I’d be looking for wouldn’t be from a stranger on Twitter who needed an app to alert them that things weren’t well with me. You might also be thinking “What’s the big deal; they’d see your Tweets if they follow you anyway.” It’s the idea of being monitored by strangers for what they perceive as signs of suicidal ideation, who are then prompted by an app on what steps to take. I think if you need to be altered via an app that I may be in crisis, then we’re not close enough for you to provide the type of help I need, anyway. The app would be much improved if the mental illness sufferer, i.e. the “targets” of this help, were able to provide a definite list of who could and could not be alerted by this app. Close friends and family being alerted of vocabulary that seems suicidal is a much better idea than any potential follower being able to take some form of control over my mental health, an idea which provides a nice segue into my next point.

We must have agency over our own mental health
There is something very unsettling and invasive about the idea of others deciding that I’m suicidal or depressed enough to warrant their intervention and/or the introduction of outsiders without my explicit consent. This is pasted from the Samaritans website, in the link I posted earlier (emphasis mine):

“Twitter’s wider collaboration with Samaritans includes a referral process which works in two ways: Twitter has Samaritans listed within their Help Centre as the go-to organisation for suicide prevention in the UK and ROI. When somebody gets reported as suicidal, the Twitter Trust & Safety team verifies the report and if they deem it accurate, they get in touch with both the reporter and the reported account, to share recommendations and contact information for Samaritans.”

Everyone I’ve spoken with or whose words I’ve seen about this would *NOT* appreciate this. If we are deemed to be suicidal by particular Tweets, when we may or may not actually be acutely suicidal at that moment, someone would “report” this in the name of help and we’d be contacted by outside sources whether Twitter or Samaritans or whoever. This removes agency; we have the right to control over how we deal with our mental health and don’t appreciate this control falling into the hands of strangers on Twitter, who decide that we merit intervention without actually talking to us about it. If you’re not close enough to send me a message offering support or asking how I am, then you’re not close enough to justify the involvement of outside elements. Many of us have different ways of coping with fluctuating severity in our mental illnesses; strangers will not know those nuances well enough and will likely try to involve outside elements when they are not actually needed.

Now, I’m aware that to some extent that the idea is for people who have lost an element of control and may not be able to help themselves in that moment, but you have to remember that these people have entire lives and other contacts, close friends, family, fellow mental health sufferers on their TL. Preventing their potentially imminent suicide probably isn’t contingent on your report if you are an effective stranger on Twitter. You also have to bear in mind that many people without mental illness tend to offer support and comfort via platitudes that actually tend to make things worse, but that’s another post altogether. Maybe I’m overreacting and people wouldn’t go to the extent of “reporting” if they are virtual strangers to the person in crisis. But that doesn’t mean this will never happen. Anyway, the point still stands: Do NOT involve outside elements in someone’s care without at least contacting them first. If you are not a close friend or family member, you will virtually never be justified to involve outside elements without consent, in my opinion.

It’s a “cookie cutter” approach
Using so-called key words and phrases to detect someone’s suicidal ideation is hardly going to be an exact science. People suffering from mental illnesses are a diverse bunch just as any group will be and we have different ways of coping with our health, with changing circumstances and different words we use to convey these issues. Some people are very explicit even when not in crisis, whereas some don’t mention things even if a suicide attempt is imminent. Personally, I think I am less open about mental health in general when I’m struggling, so if I were suicidal, the clue would be that I *don’t* mention these key words. I don’t know for sure; what I do know is that there is no set of clues that a person puts out when they are suicidal. One person’s “normal” might be another’s “in crisis” and vice versa. I know people who might mention that they are considering methods of suicide at a point when they are not in immediate crisis and don’t need intervention. I know people whose key words when they are suicidal are more likely to do with making plans, finalizing something, getting their affairs in order, becoming content or relieved (mostly because they have decided to make the attempt). The app’s approach will not pick up on all these nuances; it will give many false positives and miss many genuine positives.

What people also need to realize is that for mental illness sufferers and mental health advocates, many of these words and phrases are part of our general, everyday vocabulary. I talk about self-harm often, sometimes when I’m doing it/have done it that day, worried I’ll relapse soon, and sometimes when I haven’t done it for a long time. Many of us mention suicide a lot whether we are having suicidal thoughts at that moment or haven’t for a long time. You might say “Well, the user will see the Tweet and realize it’s out of context”, but it’s not as simple as that. If I write “I can’t stop thinking about self-harm”, you have no idea what I mean by that. I could mean I’m fighting the urge from minute to minute and need immediate intervention or I could mean that I’m in a temptation phase where I know I won’t do anything and that it will soon pass. I often have periods of intense fantasy about self-harm and suicide methods without there being a big danger of me actually doing it. Often the imagining itself is a great comfort. So did that tweet need reporting or not? What if it had said “I can’t stop thinking about suicide”?

The potential for abuse
Finally, the lack of privacy concerning the app, which is intrusive and unsettling as it is, provides a potential for abuse. Many people may have a stalker following them or trolls, who would then take the opportunity to harass someone who may already be in a moment of crisis. Also, many people suffer extreme mental distress even in periods where is little or no risk of them actually attempting or committing suicide, and the last thing anyone needs in those periods is being harassed or trolled. Even people with good intentions can make it worse by offering platitudes.

Basically, I and many others feel like they have done very little or no research with actual sufferers of mental illness on Twitter. It seems to have come from “higher up” where they thought this was a good idea without asking the people concerned. The app could be much improved if the people being monitored could explicitly choose a list of those who would be contacted in the instances of tweets suggesting suicidal ideation. Twitter is a place where many of us who suffer from mental illness find we can be open and often already we receive an enormous amount of support. My fear is that this level of monitoring and intervention will make people shut off. I and many people I know have already explicitly stated that we do NOT want any of our followers using this app to monitor our Tweets. If you want to show support to your friends, try sending a message, ask how they are, if they need to chat or vent, if they need support. Many people don’t know what to say to someone in crisis, and that’s o.k. If you are not a mental health professional, then your friends likely don’t expect you to be able to always say the right thing. Sometimes just an offer that you’re there to listen or even just a sending of virtual hugs or a ❤ can be enough. It means we know you care but may not know what to say.

I hope that the better elements of this app can perhaps be developed into something better and it raises awareness of the problems surrounding this kind of thing that people without mental illness may have never considered.