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!

What I’ve been up to

After I wrote the goals list and found I was writing a lot, I thought I’d just write a chatty post of what I’ve been up to recently!

Last week for Volunteers’ Week, one of the charity shops I worked in had a little craft day in a nearby town. I wasn’t sure what to expect, but because I’m not getting out much these days I’m jumping at the chances for days out as long as I’m spacing them apart from other things. I took my chair with me as I thought it’d be an outdoors craft-fair-type thing, and asked my sister to come along to push me, but actually I was sitting down the whole time anyway, as it was an indoors class with a teacher on crafting with old t-shirts. We all felt a bit silly, but actually it was pretty fun, and I will be doing some of the activities with my six-year-old niece, I think. We made keyrings, a ringed scarf, and a yarn ball for use on whatever projects you want; I finger crocheted the yarn ball and it actually works out quite interestingly! Maybe I should get pictures and put them on.

The Great Tidying Project is going slowly but steadily! We still keep saying if one person had my motivation and my sister’s physical strength, we’d have worked wonders by now! Alas, my health means not being able to really work tidying and organizing consistently, as many of you will understand all too well; with my sister being out of work at the moment as well, it’s harder for her to get motivated! But I’ve finally got all my crochet yarn in one place, my books all into (my clothes) drawers (or mostly; I still have some on shelves!). We’re hoping soon to go through all the files on our old desktop and get rid of it, and use the space for DVD shelves, as currently the DVDs, while in alphabetical order, are inconveniently stored in a cupboard in which we plan to put a new shelf. So you can see it’s a bit of breakout going on; to do task X, we have to move something out of space A, but to move things out of space A, we need to have done task Y and cleared out space B, and so on. But I really hope to have everything done so that I can enjoy a productive summer with new walls, curtains and carpet (we seriously haven’t decorated this place for about a decade!). Well, carpets are expensive, but at least new curtains and walls, and then we can get lots of photos on the walls. 🙂

I’m still working on transcription projects on Fiverr, which are interesting. The money works out as peanuts per hour, but it’s nice to have the extra money sitting in my account. At least I’m managing to earn something just now, and it feels good to help people out; plus the assignments are interesting!

As I mentioned I haven’t really worked much on my novel recently; it’s a combination of things, I think: I’m nearing the end (I stopped like this near the end of my first novel too, and I’m not sure why!) and I am sad about leaving these characters and this story behind. I also feel better to finish the current project when I have my plans for the next laid out more precisely, which I haven’t done yet, so perhaps if I work on that, it will speed things up! I’m not sure exactly which project I’m working on next; I might try working concurrently.

I have been doing most of my language work offline (or by translating lyrics) so I hadn’t contributed to my language blog for maybe half a year! So I got working on some lessons for that, which feels good! Even if it’s not to earn money, I feel a lot better stuck at home if I can work on things like this that have a visible output. I have also just recently got back into a quiz website I’m part of–you play all sorts of quizzes, games, tournaments, and write your own quizzes and questions which are approved by an editorial team. Writing educational quizzes can also feel like work, and in a good way–something with visible output that others can interact with.

I was going to write about health in here, but I might kick over to another post for that, because knowing me, it’ll go on forever even though I don’t feel like I’ve necessarily got a lot to say! Nothing major is coming up for me, but I’m going to volunteer at the other charity shop, the animal charity, on Tuesday, as now I’m alternating between the two to build up slowly, so I might post about that if anything noteworthy happens!

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.)