I knew my wheelchair was falling to bits!

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

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

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

Independent advocacy visit

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

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

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

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

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

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

When will my new 2015 life finally arrive?

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

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

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

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

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

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

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

Fundraiser for my motorized wheelchair

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

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

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

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.

TW: mental illness, suicide.

TW: mental illness, self-harm, suicide

I haven’t written here for a while now, but I will get onto the general update posts after this one, as I just feel I need to get this all out. (It ends up quite long, and me somewhat rambling about mental illness in general.)

Most of you have possibly already heard the awful news about Robin Williams, who has apparently committed suicide. As I’ve been feeling on the brink of a self-harming relapse for a while recently, this has really hit home to me that some of us really are “lifers” in depression. We get over episodes and feel good, but down the line we don’t know how bad it might get again. I’m somewhat come to terms with this in general, but it’s still hard, of course. So, I just want to use this space to get out everything I need to, and I hope that people don’t see this as me trying in anyway to hijack and derail this tragedy. I hope Robin has finally found peace and he and his family are in my thoughts. I hope to find strength from the loss of a fellow warrior, and I hope that the rest of you in this fight can too. I just want to write this mostly as catharsis for me, but also to educate people some more on what it’s like to fight this, to suffer from mental illness, because, while I haven’t seen any horrible comments relating to Robin, I know that they’re most likely out there and I probably will come across ignorant comments, some intentionally vile, but some from ignorance. I’m trying to fill that void of ignorance for those who are willing to listen.

I’ve suffered from depression and self-harm since about age 10, and I’m what I call a “lifer”. While therapy, medication, and simply time can help in a specific episode, I inevitably will relapse later down the line. I’m aware of this, it’s been happening for more than half my life, and in some ways I accept it. It’s been easier to deal with knowing that a relapse is inevitable; I feel more prepared and feel I can be more open about it than if I and my family pretend that I’m “cured” after an episode wanes. Right now, I am recognizing the signs, and it may or may not turn out to be an actual relapse with harming; sometimes it passes, sometimes I pass an invisible line without having actually harmed again yet where I know I can’t stop it. Maybe it sounds defeatist, but knowing you’re relapsing with a physical illness doesn’t stop it happening, rather it makes you more prepared to deal with it. And as I often say, I’m a proponent of the fact that mental illnesses are physical illnesses that affect mental processes (and often physical ones too actually).

In psychology, I didn’t find therapy helpful for a long time because we were pretending, basically, that I could end the cycle through changing the way I think alone. Well, part of my therapy was to accept that negative things happen in life, and so by a certain point, I told the therapist that this was also something I needed to accept to be able to cope with it: my mental illness, just like my physical, is incurable. I will have good days and bad days, good months and bad months, but I must always be prepared somewhere in my mind for a relapse. Same with the lupus: I spent a lot of time deluding myself that it wasn’t going to get worse, that somehow someday I’d have my old life back. Well, all that did was cause me more upset and disappointment, waking up to find that I wasn’t better, that I was sometimes worse. Coming to terms with the lupus being permanent helped my mindset a lot, and so did the acknowledgment that I was never going to be completely “cured” of my mental illness either.

If you don’t suffer from any form of mental illness, or not so chronically, it can be hard to imagine being in a state of mind where self-harm or suicide seems tempting. Believe it or not, in my good phases, I also can’t imagine wanting to cut, enjoying that pain. I think of some of my worst wounds and cringe hard. I think “How could someone do that to themselves and be able to bear the pain and the gore?” Because to do these things, it needs a certain mindset to do it. It’s not the case that when you’re feeling absolutely amazing that you just think one day “Hmm, I think I’ll cut or kill myself”, even if it seems that way to outsiders, although episodes can come on so suddenly during what you thought was a good phase: my worst wounds, where I was hospitalized, were inflicted the very day I graduated from uni. But even from the graduation to the harming, a swift change of mindset took place. Darkness had settled in.

People have called those who attempt or have committed suicide cowards. They say things like “man up”, that everyone goes through shit and that people should just hoist themselves by the bootstraps and cope. I’m a believer in optimism, and a good attitude can take you far, but it is not miraculous: optimism isn’t going to magically sort out the biochemical imbalance of my brain or indeed cure my lupus by altering my immune system so it stops attacking my own body. If you’ve thought something along those lines, that suicides or harmers are attention-seekers, cowards, that you think they’re beyond help, try this: imagine a bad day you’ve had, a day where for no pinpointable reason you felt inexplicably sad, angry at life, apathetic, perhaps, where nothing seemed to go right, or even though everything was going right you still felt this way, when it should have been an easy case of you saying to yourself “just cheer up, have a positive attitude”. It didn’t help? Sometimes it doesn’t. Sometimes there’s absolutely nothing you can do on a day like that except let it pass. Now imagine that bad day stretched out over weeks, months, years, with no end in sight, and no matter what you do, that darkness, that cloud just doesn’t let up. Would you be a coward for wanting that to end?

I do have days where kicking myself up the bum helps. I have days where I’m moping about and changing my attitude changes everything. But that’s not what I’m talking about, and that’s not what depression is.

Now, it’s not always so explicably constant for people. Many people with depression have amazing days, have weeks or even months where they are, to all outward experience, just fine. I’m not talking people putting on a mask, although that’s a whole other problem. I mean that even while depressed, people can actually have good days. Take grief for example, which is a kind of depression in a way; people grieving have days even in the midst of their grief where they genuinely enjoyed themselves and generally forgot about the loss. Because people with depression can have those intermittent days, or indeed long gaps between episodes, people often thinking we’re not as ill as we make out. Often when people commit suicide, friends and family will say “But they’d gotten much better”: sometimes this apparent improvement is a result of the decision of suicide, which often takes the weight off someone’s shoulders, removes their burden, but also sometimes someone did genuinely get better from an episode and then relapse, which the family doesn’t recognize because if you’re better, then you’re better, surely?

A friend of mine has recently been feeling generally down and dissatisfied with life. When I suggested to her that she was depressed, she said she had considered it, but she had decided she wasn’t, not because things didn’t point to that, but because she had been made to think that being depressed meant constantly crying, not being satisfied with any part of your life. I told her that personally I never cry for myself–mind you, I think part of that is due to having hidden my true feelings, mental and physical, for so long–and that doesn’t mean much in terms of whether you’re depressed or not. I explained to her that many people go through it for a relatively short time; if she’s depressed now, it doesn’t mean she has always been or always will be. But some of us are lifers, and it’s certainly not due to a lack of strength.

This has gotten very long at this stage, and I’m not positive exactly what I wanted to say with it. I just feel that people who are most dismissive of disease, whether mental or physical, are people who complain most about the little things in their own lives. I’m not saying that people can’t complain, but when you act like the world is over because you had one shitty day and then dismiss people who go through worse every single day, it’s kind of crap. Some people make ableist and ignorant comments based on just that, ignorance, but I’ll know the difference when someone make the effort to listen to me and try to understand and makes an effort to change their thinking about mental illness, their ignorance. So often with disability and ableism in general–in fact, in any social oppression issue, really–I’ve had people who think they are “allies”, they try to support the disabled community, but when one of us comes along and says that they’ve said something ableism or that we find an issue with, they often walk out of the conversation, acting like a rebuked child, thinking it’s unfair because they show support for us and we “pick holes in it” or something. Those people are not true allies. On the other hand, I’ve had people, including my twin sister, who’s been there for all my life through my struggles with physical and mental illness, who say ableist things, and then when they’re called out on it, they apologize sincerely and take it on board to try to adapt the way they think about disability and mental illness, which they have no first-hand experience of.

Basically, I’m just asking people, if you haven’t experienced this first-hand, don’t jump to making ignorant or mean comments about Robin Williams or any other sufferer of mental illness. Read and listen to our words to try to understand what it is we’re going through and how you can help. I understand, it’s awkward for you. I can think personally where I’ve been comforting friends who are going through tough times, and I know that sometimes you don’t know what to say. You’re afraid of saying the wrong thing. Listen to your loved one and try to engage with others’ experiences, particularly online, and if you do say the wrong thing and are called out on it, apologize, take it on board, and don’t make the mistake again. You don’t have to have a degree in psychology or psychiatry to support people with mental illness: mostly we just want to know that people are there for us if we need them. Don’t get offended if people then don’t vent to you or confide in you; don’t get offended if your partner or friend or family member is still struggling no matter how much you help, don’t get offended if you get called out for saying the wrong thing or something ignorant or ableist, no matter your intentions, because out of being told you said something insensitive and being dismissed or hearing a cruel comment when you’re trying to fight this, I think we know what’s worse.

Just remember your own bad days and consider how that must be to cope with, day in, day out. Don’t blame us; be there for us. You wouldn’t blame or dismiss a relative with cancer; you’d probably do whatever you could to support them and make sure they’re comfortable. Well, it’s not all that different, really. The main thing is try, and if you’re wrong, adapt.

I hope that Robin Williams is at peace, and I hope that those of us still here in this fight can find strength. I’m hoping I don’t continue down this slope to a relapse, but I know I might. And I know that even if I don’t fall down it this time, there will most likely be a next time. Yes, I am a “lifer”, and it’s scary to think that at any point in the future, I could go back to my worst place, I could find myself in Robin’s position. And so I believe in being as open as I can about my struggles–that doesn’t mean during my episodes, I can talk to family for example about my thoughts and worries, because I most often can’t, but I won’t be ashamed to stand up and say that, yes, I suffer from depression. Yes, I take medication for it. Because if we’re going to help those with mental illnesses and prevent people from taking the final step in removing themselves from their pain, I believe we need openness and understanding; many of us have hidden our struggles because we don’t want to hurt loved ones or make them angry, and suffering in silence is one way to worsen it, to let it progress, sometimes to a point where it’s too late. Please support your loved ones in this fight, even if you can’t understand it fully. I personally have found the panicking about being caught harming worse or just as bad as the feeling that drove me to it, and being able to say to my sister, yes, I did it, and make sure the wounds are cleaned and uninfected, has helped me beyond words. It doesn’t mean she “lets” me do it, it doesn’t mean it doesn’t upset both of us, but bear in mind that guilt is often the strongest emotion in mental illnesses, and is often the one that leads to suicide, so please try not to produce even more guilt in us by blaming us or getting angry with us.

RIP Robin, and all the other warriors we’ve lost.

This week’s bite-sized goals (15-21 June)

A day late again! I don’t even want to think of goals right now, haha; I’m pretty sick with my throat and sinuses, but let’s not make excuses. 😀

1. Sort out the Christmas presents! *blush* Every year, my sister and I and friends down in Hastings end up sending Christmas presents to each other very late, but this is just ridiculous! Neither of us have sent to each other yet! It’ll be a nice half-year Christmas batch, haha.

2. Work on getting my stuff out of my little sister’s room. (She’s moved out, so we’ve kind of been using her room as a bit of a storeroom for a while.)

3. Work on anything artsy, whether my crochet, drawing, or watercolor.

4. Work on translation in any capacity, whether lyrics or the books.

5. Write up a list of what I want to talk about with the rheumatologist next week. Yes, this early, because I inevitably end up forgetting (or leaving it at home!) and then get out without mentioning something or other!

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! 😛

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 cliché. 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.

Health update

Another reason I like using this blog as a kind of journal space is that I know some friends follow it, and seeing as I’m not very much into social networks again at the moment, at least this way they can see what mundane things I’m getting up to. 🙂 But I don’t want to lose sight of the fact that it is supposed to be a health blog! Maybe I should have put on my goals list to do some of those symptoms post!

I see my rheumatologist this month, so I better start thinking what points I want to bring up with her. (Without fail, every time, I either forget to write a list or remember to write one and forget to take it!) With lupus, there’s so much going on, and also so many relatively minor things that often things don’t stick out, and I leave the appointment before something comes to me that I forgot to bring up!

Using the walking sticks so often has made my shoulders a lot worse, particularly the clavicular joints (those at the sternum and those at the shoulder). My previous rheumatologist was considering giving one of them a steroid injection but as they tend to be limited in the number they give, I wanted to wait until I was desperate. I’m not at the desperate stage yet but I want to see what this rheumy thinks. Every morning I wake up with very painful shoulders–I don’t know what I’m doing to them in my sleep! The sticks are also affecting my wrists and elbows, but not quite so bad; it’s a catch-22, as all these joints were bad anyway, but using sticks to give my hips a break is making them worse.

My sinuses have been driving me crazy. I often get a lot of pain in them, and to even touch my cheeks is so tender. I can’t remember if I mentioned this to the rheumy already, but I think I will this time anyway. I can deal with many pains, but it’s hard to be productive in any fashion while feeling that your face is about to explode! The other day the pain was so bad that my sister thought I was having a migraine. I also don’t know if the mastoid pain is related. Also, I’ve been getting horrible spasms in the muscles in the back of my head–I know I had this when my lupus first started because I remember getting medication for it, but I can’t remember if it felt like this, or as bad as this. Sometimes it’s random, but I notice it intensifies when I’m playing with or talking to my one-year-old-nephew, so I’m working if it’s to do with how I’m holding my head talking to him, but I don’t necessarily notice if it’s only while looking down.

My heart symptoms have been quite bad recently, too. It’s a very horrible “grey” feeling you get when it’s particularly playing up. I’m so thankful that my cardiac issues are more a build up of small issues rather than anything big, but I do have to bear in mind things can develop or worsen, so if I feel things are worse with it in general, it can’t hurt to mention it.

Although the colonoscopy came back fairly clear a while back, I’m still having strange issues in that department! I think I just have to chalk much of it up to the IBS, but because of a lot of the pale colors in the stools, I will have the rheumy check the liver function just to make sure it’s not a biliary issue. Hopefully again it’s just one of those oddities–combined with IBS and lupus in general, just about anything can happen with poop, I guess!

I’ve been strangely neglectful at taking my pills regularly (and I wonder why I flare!). It’s not unintentional; it just slips my mind very easily because my regular pills don’t do anything short-term, so it’s easy to forget if I took them today or not. The doctor is probably wondering why I haven’t re-ordered some scripts for a while! :/ (Which reminds me, I do have one waiting; it’ll probably be outdated by now… I am going to sign up with the pharmacy so they pick up the scripts for me, as it’s beside the charity shop, so I’m at the pharmacy more often than the doctor anyway.) I keep trying to think of a way that I will remember to take them more, such as keeping them downstairs, but then sometimes I don’t go down for hours after I get up–saying that, I’ve got to go down at some point, so at least I’d take them, even if not quite at the same time everyday. My biggest problem is with the night meds, because I have the amitryptiline in there; if I get up late, which is usual, I don’t want to take the amitryptiline too early otherwise I’ll not have much of a day; but if I take them too late, then I’ll sleep in far too late the next day! My GP never did get back to me about the sleep clinic, but I will ask again because I am sure I can’t work on a 24-hour routine, which makes settling into a routine harder, with and without the pills, so I’m up half the night, sleeping half the day, and still awake for a time when I go to bed. I need to try in earnest to ignore the clock and have a trial period where I just go to bed and get up when I feel like it. But often I’m too tired to stay up and do anything, but still can’t switch off. So I think I will ask about the sleep study again, and in the meantime try setting an early evening alarm and taking the pills–they often don’t do much anyway, so I’m still awake half the night, but then I find I’m even more sluggish in the morning.

I need to remember too to ask the rheumy about getting a regular script for opiates. I’ve been staying away from them as much as I can, because I’ve seen family members go through awful withdrawal with them and because I want to keep something for when things get worse! So I was only taking them sparingly, but this year in particular, I’m relying on stronger painkillers. Otherwise I’m pretty much stuck with paracetamol, which I take as a matter of course and which don’t do anything noticeable! My rheumy took me off the NSAID I was on too as she thought it might be causing some of my stomach issues, but I’ve not noticed a difference, so I might go back on them although they too were not doing much tangible for my pain. I at least need to ask her about my options, as nothing lighter is really cutting it, unfortunately. I’m still not sure about going on opiates regularly and long-term, but I’m much more comfortable on them, as you might imagine!

It’s 3:25am, and I probably should go to bed now–it’s hard to ignore the clock and not get guilty. If it’s hitting 4.30/5am, I think, “Oh, I really must go to bed,” or if it’s hitting that time when I’m meant to be getting up, I feel pretty disappointed with myself! Then the guilt over the clock often means my days are cut short, and time I could have spent being up and productive is spent lying in bed awake! If only I lived alone, eh? 🙂 At least it gives me time to think, work out some questions over my novel projects!