Rheumatologist visit

Nothing too much to report this time, I don’t think. I’m thankful that most of my last few visits there has been nothing major to investigate. My blood and urine results were good last time, which is a relief. Because I’ll never learn to be more organized when it comes to rheumy visits apparently, I scribbled the list of questions on the morning instead of a week or so early as I was supposed to for my goals list! My rheumy is lovely, though, and we end up chatting about God knows what half the time. She was very happy with my plan to do my Masters; she thinks it’s very sensible, especially as I explained how I’ve more or less come to terms with the fact I’m not going to have the forensic pathologist career I want, where I’m married to the job, and do little else! With my health now, I’ll be happy to work in my field even vaguely, with a job that’s not too strenuous and gives me time to work on my hobbies and doesn’t burn me out.

For my sinuses, I’ve to go to my GP to get antibiotics to see if it clears things up–if the symptoms do return, then they’ll refer me to the ENT. I’m hoping they do the job, but with an autoimmune disease, it could be inflammation that is not caused by any bacteria. Fingers crossed! My sinuses have calmed down at least since recently when I got a bit of a cold and really felt like my face was going to explode. Otherwise, I can deal with the day-to-day pain and feeling of pressure, although it is fairly annoying!

There’s not a lot to do for a lot of my joint pain, unfortunately, as much is likely caused by my hypermobility syndrome. I just need to keep up with physio as I can to strengthen some of the muscles groups around my worst joints and give them a bit more stability. It’s a frustrating mix of conditions, as using my sticks to get the weight off my hips a bit and make it easier to walk in general worsens my upper body joints.

I asked her for the opiate script, and she was quite happy to do it. Mostly I’ve been taking dihydrocodeine and co-codamol anyway, so I think she sent it through for co-codamol as I’m on paracetamol anyway (not that you’d ever know it for all it does, haha) so hopefully the combination is more convenient. For a long time I was so wary of opiates; my parents have both been on them for quite a long time for chronic issues, and as they’re quite addictive, I see them go through the withdrawal and that kind of thing. I had my stock of them for when I was “desperate”, but of course, “desperate” has been getting more and more frequent to the point where I was more or less taking them every day anyway for my pain, as paracetamol and NSAIDs weren’t touching it a lot of the time. As time went on, I thought, “Meh, it’s not as though I’m going to get better and need to come off them anyway!” I don’t the point in suffering now for a “just in case” in the future anyway.

As for my calf, the gastrocnemius muscle is shortening. My calves have always been the worst muscles affected, but recently the left calf has been getting tighter and tighter, with the top of the muscle behind the knee becoming even harder than usual. The podiatrist at one point noticed as she was trying to lift up my foot just how resistant the muscle was in that leg. This type of thing can be a vicious circle, so I’m basically just trying to stretch it out on a regular basis, but by this point, it’s almost unbearable to stand with both legs straight, so I’m kind of on tip-toe on that foot which is just keeping the muscle short. So every now and then I’m just dealing with pain of keeping both feet flat to stretch it out a bit.

She hadn’t known about the colonoscopy (see how information so easily is transferred between medical departments here!), so we spoke about that for a while. I’m still having bleeding which we can hopefully chalk up to the hemorrhoids, but I’m still getting very pale stools and that kind of thing. We’ll see if anything comes up on the bloods this time anyway. She was surprised that the doctors had never really bothered about my IBS before–I explained that I was diagnosed very fleetingly while they were still fobbing me off for all of the lupus stuff. So she’s trying me on a proton pump inhibitor to see if it helps with a lot of my gastric symptoms–we stopped the NSAID last time just in case that was contributing to the symptoms, but I don’t see any change.

Happily, she gave me a script for the medicated mouthwash I’m meant to have gotten long ago for my mouth ulcers. It’s so expensive in the shops though. I have a cheaper one just now–which tastes awful, haha–but it’s much easier if I can get the better one on prescription!

Finally, my wonderful sleep issues… I told her I had been getting quite bad at taking the amitryptiline for various reasons, but a lot of it was the hangover it gives you the next day. It’s all well and good to take it and be able to get to sleep reasonably sooner the night before, but not if you can’t get up the next day! We’re trying nortryptiline instead, which is a second-generation tricyclic rather than a first as amitryptiline is. It should give me fewer hangover effects. Tricyclics can also help neuropathic symptoms, so I’ll be glad to have one I can take more regularly.

More wheelchair travels and disappointment

Thank goodness for all the kind Samaritans who help out whenever I go out with my wheelchair. Even with my sister there helping, you realize that the world is so not catered to wheelchair users. We took a trip through to Glasgow to visit a few shops and go to the cinema–it was so odd being back there, in a way like I still lived there and in a way like it was completely different! We took the train, and at least there there were lifts to get up to the footbridges and down again, although it does require somewhat of a detour. On the train, there were two lovely guys who gave us their seat and made sure the wheelchair was secure for the journey; they were very happy to help us off when we got there too, but we didn’t need it so much as I usually just jump up and use my sticks to get on and off transport as it’s easier.

Although I can’t manage for long, when I’m in stores, I like to wheel myself about and just go off on my own for a bit. Outside though, I go so slowly that I really do need my sister to push me; the problem is that she is small in height and weighs less than I do, so it can be a bit of a struggle for her to go up hills for example–and I usually get out and go up the hill on my sticks if I can! Of course the solution to this is that she gets fitter or I get someone stronger to accompany me! It’s a bit of a double-edged sword with using the chair, I think; on one hand, it’s amazing and it means I can get out more and not overexert, but I feel bad for being quite the inconvenience–getting the chair in and out of the car is a pain, having to detach and reattach the feet; having my sister have to exert herself so much to get me around. Also, as I think I mentioned before, there’s a process of getting into that mindset of being comfortable when people go out of their way to help you. It feels good that people are helpful, but there’s a bit of guilt and embarrassment that I don’t want to cause a scene, which I know is ridiculous, because I personally don’t feel put-out at all to help a wheelchair user.

The cinema was a bit of a pain. Although it’s the tallest cinema in the world, the lift was frustratingly tiny! In the actual theater, there was a wheelchair space, but it’s naturally way down at the bottom, and I just couldn’t have sat there and craned my neck up for the whole movie. I don’t know how they could better allow wheelchair access to the upper rows, though–as usual, I went up on my sticks, leaving my wheelchair in the wheelchair space. But the biggest problem–the toilet! The disabled toilet had a long thin hallway-kind of bit after you go in the door, a bit like my bedroom at home, which was fine on the way in, but coming out with the chair was a nightmare. The hallway section was barely wide enough to fit my chair, so I could only approach the door head-on, and it meant that when I grabbed the bar of the door with one hand, I was quite stuck. If I use only one wheel on my chair, then it turns rather than going backwards, but I needed the other hand to hold the door! After managing to scoot back somehow, I lost grip of the door. I was getting ready to pull the alarm cord, seriously. (My sister had joked before I went in that I should take my phone just in case, even though I’ve had no problems with getting stuck in toilets before. :P) I had to hurt myself quite a bit to get out. There would have been no issue if there was a wider space around the door instead of this thin corridor. I mean to write to them about it.

We popped into Mcdonalds for a bite to eat before heading home. Of course this was another issue, with there barely being any space to move anyway. The one we usually go to in Perth is fairly roomy, but this was in the town among the other shops and really wasn’t. We did fold it up and store it as close to our table as possible, but it still meant people had to struggle past. Again, not too bad for me because I got out with the sticks and sat at the table, but I was thinking all the time, what for the people who can’t? They had made the accommodation with the automatic button for the outside doors for wheelchair users, but I guess not really thought beyond that enough. Wheelchair users staying in their chair would simply have to block up the aisles.

On the train back, they were very helpful, very ready with the ramp this time and taking note of where we were getting off to help us then. There was already a wheelchair user on the section, meaning there wasn’t much room for me, which was fine because I simply got out again and sat in a seat. But then there was the issue of where to put the chair–I ended up having to tie it up in the bicycle section. We commiserated a bit with the woman who was already there.

At least in Glasgow, most of the kerb edges actually have flat edges where you can go up! Here in Perth, most of the parts of the kerb that come down are still quite a bump that we struggle up them; if I were on my own, I would never be able to get up them. Makes a bit hard to even cross the roads if there’s no way to get yourself onto the next pavement! There have been sections with such a bump, that other people have had to come along and help us. The council had to make these “flat” areas when they did the paving anyway; I wonder how much trouble it would have been to actually make them flush with the ground. Not much, I’d say. I think I’m going to write to my local paper about it.

I’m happy that so many aids are already in place and strangers on the street have been so kind and helpful, but it’s not enough. I feel like the world makes a few accommodations and then says, “That’ll do. We accommodated for the disabled.” It feels like we just don’t factor into consideration fully for things, like paving the kerbs flat. Making the world accessible for wheelchair users doesn’t really affect the able-bodied, which is the annoying thing. It doesn’t affect them badly to have alternative arrangements in place for us. Too often, it feels that accommodations for the disabled are an afterthought. Part of it is me adjusting to a lot of it, I think, but so much is simply that the accommodations aren’t there in the first place; even people who have been in chairs for a long time struggle. I’ve heard it said that having the disability doesn’t disable you, but the treatment by society does, and in many ways this is true. If the accommodations are in place, there’s no reason why we can’t have outings and do errands, etc., just the same. Yes, life can be hard, but councils and establishments and so on could do more to make sure it’s less of a struggle.

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!

Goal review (8-14 June)

I kind of forgot to specifically look at this list during the week this time! (Hence the late entry, technically!) Hopefully I’ll get used again to accomplishing the goals here.

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.)
Happily, I did do this, although technically it was yesterday, Sunday, so it didn’t really count for that week. 😛 It means I’m absolutely shattered and sore today, but we’re making progress. Soon we’ll get new curtains, and we’re hoping to put up a wall cupboard in the bedroom, a shelf inside the cupboard, and possibly another shelf on the wall. We plan to paint the walls fairly basic and put up photos and pictures, and as for a new carpet… Bit too expensive while we’re saving for postgraduate study!

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!)
I didn’t do any physio, unfortunately, but I’m hoping to make more explicit plans that are approachable through the week, along with my sister making her exercise plans so we can do it somewhat together.

3. Work more on the Animals 2 lessons on my language blog. (If anyone’s interested, it’s polyglotscot.wordpress.com.)
I did some of these. I’ve got quite a few to go, but they don’t take long. It’s collecting the vocabulary in the first place and the coding for the pages that takes long.

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.)
While my mum was working on the garden, I sat outside to watch my nephew and wrote a bit, which was nice.

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.)
I haven’t really worked on translating lyrics for a while, but rather on the books I’m translating.

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!

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.)


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

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

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

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

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

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

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

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

Flare and wheelchair travels

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

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

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. 🙂 At least they’re not being nasty about it! (Which I’ve certainly had from family members when I was undiagnosed, and I think they as well as the doctors thought I was rather a hypochondriac.)

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

World Lupus Day – useful links

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

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

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


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

Thank you!