#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 โค 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.

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! ๐Ÿ˜›

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 clichรฉ. 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. ๐Ÿ™‚ 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? ๐Ÿ™‚ At least it gives me time to think, work out some questions over my novel projects!

This week’s bite-size goals (8-14 June)

O.k., so it’s technically Monday the 9th by now, but I’ve been meaning with the past few Sundays to get back into writing up weekly goals, so here I am–it’s 2:25am, so I’m not toooo late with them!

1. Tidy or organize something, anything! (My sister and I are still working on organizing our room; two 23-year-olds squeezed back into one bedroom with too much stuff makes it quite hard to organize around our things! Hopefully soon I’ll get all my things ready on my desk to work there again with the drawers organized too.)

2. Do some physio. (Because of my recent flare, everything’s pretty much been at a standstill. I’m going to volunteering for just 2 or so hours a week to build back up, and not doing my walks–least of all because I’ve been using the wheelchair a lot, so I’m not really able to do daily walks! In time, I’m going to build up a bit more indoors or in my garden so I can simply stop when I need to and not have to somehow make it home!)

3. Work more on the Animals 2 lessons on my language blog. (If anyone’s interested, it’s polyglotscot.wordpress.com.)

4. Work on my novel! (It’s been at a standstill for a bit–this seems to happen with each project. I think it’s a combination of not wanting to finish and not having things laid out enough for the next project.)

5. Reach five translations on each of my X–>English. (I had this one already but haven’t done it yet; I’ve been too busy working on other combinations. I have left to reach 5: 1 Dutch, 3 Czech, and 1 Slovenian.)

Flare and wheelchair travels

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

I did pop into the shops I volunteer at while we were in town–while they weren’t too happy to see that I’d declined this bit further, they were happy to see me. And in one of my shops, they had done an Easter draw for the volunteers, and for a change, I had some luck and won the vouchers, which contributed toward an electric toothbrush (easier on the arms!). We went for a walk around one of the inches here (basically a big green park), and it was lovely, although a bird did do its business on us!!! Well, I hadn’t laughed like that in a while, anyway! ๐Ÿ˜›

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

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

One point about using aids that are so much more visible is that my illness is a lot less invisible to my family now, which overall is a good thing, I think, although I do have days where I just want to be “normal” as I’m sure we all do, without having people be able to see our disabilities. But actually, ultimately, it’s a lot easier in so many ways when it does become visible with closer family and friends. Mum has been asking quite a bit about lupus more regularly now, and while I’m sad to have to give bad news in the answers, such as the likelihood of progression rather than getting better, to have them actually interested after so many years makes me feel happy, validated. For so long I went without a diagnosis, yet when I finally got one, I hadn’t felt like they invested much interest in the condition. But things are getting there. ๐Ÿ™‚ At least they’re not being nasty about it! (Which I’ve certainly had from family members when I was undiagnosed, and I think they as well as the doctors thought I was rather a hypochondriac.)

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

Mainly babbling!

I haven’t checked in for a while, not even to do my goal list for the week. No matter! I’ve been a bit all over the place health-wise, but I was happy to get out of the door today; alas, it was to the dentist for an extraction! So while my face comes back to life, I’m trying to resist keeping my tongue out of the gap. ๐Ÿ˜›

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

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

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

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

Otherwise, I’m just getting on with my usual stuff, mainly translating, and working on transcribing interviews for a client. It’s my older nephew’s thirteenth birthday today, so excuse me while I feel ancient with a teenage nephew! It’s hard to think that I was quite a bit younger than him when he was born! I plan to get to the Ancient Egypt exhibit this month in my local museum before it ends, and on the same note, I need to get round to getting my new tattoo, which is Ancient Egypt-themed (Mum was meant to pay for it for my graduation… I’m such a procrastinator in browsing tattooists in this town!) O.k., I’m logging off before I babble on even longer. ๐Ÿ™‚ I hope everyone’s well.

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

This week’s bite-size goals (27 April – 3 May)

1. A repeat from last week that I failed to do: sort through clothes and choose which to donate.

2. Work on coding the template for the “Family” lessons on my language blog.

3. Solve requests on LyricsTranslate.com to reach 100; I had 10 to go but as I did one today, I have 9 from the time of writing this post.

4. Translate my current little blurb text into more of my languages for practice in writing in them. (I’ve done German, Russian, Italian, and French for this one.)

5. Work on my novel.

Goal review (20-26 April)

Well, this week was a write-off! ๐Ÿ˜› I only completed one goal, which was number 2. I completed a Czech and a Swedish translation. For number 1, I forgot to take note, but anyway I think I only worked on my Polish project. Ah, well, I have been not very well this week, and hopefully I’m better at the coming week’s goals.

1. Work on three separate translation projects.

2. Work on lyrics translations to bring Xโ€“>English up to at least 5 each. (Dutch: 2 remaining, Czech: 4; Slovenian: 3; Swedish: 2; Latin: 5. All other languages have more than 5 complete.)

3. Register for PIP! And also phone my doctor in Glasgow to rearrange an appointment that I missed, and so I can meet up with a friend! ๐Ÿ™‚ (And cry when I see how much I miss living there!)

4. Work on music theory.

5. Sort through some clothes and donate those unwanted to make space.

This week’s bite-size goals (20-26 April)

1. Work on three separate translation projects.

2. Work on lyrics translations to bring X–>English up to at least 5 each. (Dutch: 2 remaining, Czech: 4; Slovenian: 3; Swedish: 2; Latin: 5. All other languages have more than 5 complete.)

3. Register for PIP! And also phone my doctor in Glasgow to rearrange an appointment that I missed, and so I can meet up with a friend! ๐Ÿ™‚ (And cry when I see how much I miss living there!)

4. Work on music theory.

5. Sort through some clothes and donate those unwanted to make space.

Goal review (13 – 19 April)

This is technically a day late as I didn’t really do much on the computer yesterday; in fact for a while I’ve only really switched on to listen to music and access my translation projects. I have felt rather “meh” for a while about interacting with the online world, so I’m still on a sort of break, just concentrating on my hobbies for the moment, and I’m sure I’ll get back on checking Twitter etc. in time, as usually happens eventually. The tendinitis in my right hand is flaring up anyway, making typing rather annoying just now!

1. Complete and actually make a record of each part of โ€œStage 0โ€ณ of my fitness plan, i.e. walking to and from the nearby shop each second day, completing one set of my core physio every day, and volunteer once a week. (In the run-up so far, Iโ€™ve just been doing as much as I can, but not necessarily taking a record.)
I did well in the first half of the week, when I did my walks, kept up to date on my pills, and went volunteering; alas, the day volunteering on Wednesday was strenuous enough that I’m still recovering! I’m hoping tomorrow to get a walk in before volunteering again on the Wednesday, on which I also have the dentist. Progress is slower than I hoped, and it doesn’t help that the occupational therapist has moved my appointment forward by a few weeks; in any case, I’m just trying to keep it up as much as I can, trying to remember that it’s not just a means to some end goal, but to remember that any level of fitness I can achieve is an improvement to my life.

2. Work on my novel โ€“ I have to get this one in every week, haha!
I didn’t get much done, but it was something! More time was spent on reading to confirm details for an upcoming scene.

3. Make the phone calls I need to, i.e. register for PIP (disability benefit) application, make an appointment at the opticianโ€™s, and cancel this โ€œfree trialโ€ thing for my mum before they take a payment!
I made the phone call to cancel the free trial – although it was meant to be a local UK number, I seem to have reached a women in the US so we’re not looking forward to the next phone bill! I went in person to make the optician’s appointment, and still didn’t register for PIP yet.

4. Finish and hand in job applications for part-time jobs. (Iโ€™ll post about it separately.)
My sister handed in the applications today – and she herself got a phone call for interview merely half an hour later! I’m still hoping to hear back myself but will keep a look out for other low hour jobs.

5. Work on any translation project.
I really went for it a few days ago and did 1500 words of Russian in one day as I was approaching the end of the short story I was working on, one of the longest in the book. I also did a bit of Polish which is a lot slower going!