Just more of the same bullshit.

I’m back once again to complain about my chair. As I said in my last post my very expensive rise and recline chair has broken less than two years after I paid over £800 for it.

I tried to persuade myself that repairing or replacing it wasn’t a priority but my legs disagree with me and I’ve been in a lot more pain. When I say a lot I might not mean the same thing that you mean by a lot. I mean that I’ve gone from a level of pain that I can stand without recourse to painkillers while still taking some exercise, to taking a max dose of painkillers, barely being able to walk and not being able to sleep for the itching and the tenderness.

Fortunately we did have some money saved. It was saved to replace my other half’s busted desktop computer so I was reluctant to spend it but it’s becoming clear that we need to repair my chair.

Wouldn’t it be nice if things were that simple. It turns out that we can’t just get it repaired. It has to be sent back to the manufacturer. Only the retailer, once we finally got hold of the retailer, is claiming that it’s no longer under warranty. This means that our options appear to be to bodge a repair ourselves, which probably won’t be safe, or buy an entirely new chair, which we can’t afford.

There is still some hope. The manufacturer seems to think that the chair is still under warranty so it might be possible to get it repaired/replaced. I don’t really expect that to work. I expect that the retailer will wriggle out of it and I’ll be stuck with my broken chair and my painkillers.

Once again I find myself wondering just what it is that I’m supposed to do. What does the world want? How am I supposed to get over this? Which just shows you the inherent weakness in the gamer mindset. There’s this underlying assumption at the heart of my thinking that says that there must be some way to overcome this challenge. That’s because in games there usually is some way to win. It’s built into the game.

But life isn’t a game. There’s no designer. No grand plan. No built in way to beat it. I’m not supposed to do anything.

It’s hard to stop thinking like that. I think it’s part of the bundle of assumptions that come with the myth that we live in a meritocracy. I’m an intelligent person. Surely if I just work hard and pay attention I’ll be able to prosper and succeed.

We do not live in a meritocracy. Money and connections count for far more than hard work and talent. There is no level playing field. If you’re disabled it’s a struggle just to get to the starting line. If you’re sick it’s a struggle to move when the gun goes off. If you’re a woman or a person of colour then you have additional hurdles to leap and if you’re born poor you’re running an entirely different race with a much shittier prize.

And yet I’m still sitting here blaming myself for not being able to work out how to fix this chair with the resources available to me.

And after all that whining if you fancy reading something more entertaining and you’re curious about my writing why not check out this post on my author blog about ‘Project Kindness’.

Overdoing it again

The last couple of weeks have been an important reminder of why it’s a bad idea to push myself too much. One of the problems of being chronically ill is the constant pressure to just… not be. It comes from all directions, this suggestion that I get so little done because I’m just not trying hard enough. It’s so tempting to believe it. If it’s true then maybe I don’t have to live such a restricted life. Maybe, if I just push harder, I’ll be able to actually get things done.

Let’s have a look at why that’s a bad idea.

Last Monday was a self care day. Self care is important for my wellbeing but it’s not a zero cost endeavour for me.

Tuesday was super busy. Travel, people, socialising, clambering in and out of vehicles some of which were not designed with disabled people in mind. It was a good day. I spent some quality time with my son and we saw a play. But it was a tiring day.

Wednesday was busy too. More travel, more clambering.

Thursday I had to go back out. I had to go to the council offices to renew my disabled bus pass, which can of course only be done in person. It took me most of the day to get dressed and out, I hit 8 out of 10 on the pain scale and my arms stopped cooperating. I should have realised then that I was overdoing it.

Friday was a quiet day. I rested. I read comics.

Saturday was long and busy. A trip into town. Time spent with my son and my mother. I taught my son how to tell fortunes. By the evening, I was exhausted and in a lot of pain.

Sunday I had a planning meeting for NaNoWriMo 2019. It was a lot of fun. But it meant going out again. It meant that I couldn’t rest. By the evening I was too sore for writing. I had terrible muscle spasms in my arms. I was in a lot of pain.

This Monday I had a dental appointment. And heart palpitations. My Atrial Fibrillation was back.

Atrial Fibrillation feels like my heart as decided to go dancing without the rest of me. I felt terrible but the dental surgery was close to the hospital so I decided to get on the bus and head there anyway. I thought that maybe the Atrial Fibrillation would stop by the time I had to get off the bus. I did feel better by then but I felt worse the moment I started walking up the hill from the bus stop.

I decided to go to the dentist anyway. After the appointment, my chest was still pounding so I walked back down the hill and headed to the Accident and Emergency department of the hospital.

As with any trip to A&E there was a lot of waiting. A short wait for triage, a slightly longer wait for a cubicle and a doctor, then a wait for the ECG. Then another wait for a doctor to look at the ECG. Then a wait for the doctor to talk with a more senior doctor about what to do.

In the end they decided on a blood test to check if there was any damage to my heart. The longest wait was for the result of the blood test. That turned out to be fine. No sign of damage. I was allowed to go home.

And that’s where I’ve been since then. All I’ve achieved since coming home on Monday was a load of laundry, a short blog post on the Parlour of Doom, and cleaning the toilet. I’ve decided that this was my heart’s way of telling me that I need to take breaks regularly.

Sunday Update 16/06 – Medical fun

I had hoped to have the first Spoiler Club post up this week but I was stopped mid-flow by a Fibromyalgia flare up. I was suddenly hit with muscle cramps around my left shoulder that had me typing one handed (see my apology for more details). The whole week has been almost entirely taken up with medical shenanigans.

I finally had the appointment with my doctor that I made in part to talk about my ADHD and maybe try to get some treatment. My doctor hasn’t heard of executive dysfunction/executive function disorder but wants me to come back with a list of the symptoms that make me think that I have ADHD. This is going to be fun, and by fun I mean fucking torture. Not only will I have to focus on all the stuff that makes my life miserable but I’ll have to translate it into language which will make sense to a GP who probably doesn’t know much about ADHD.

For the people at home keeping up with my toe situation (see here) I’ve got my second prescription for antibiotics and I have heard back about my referral to a podiatrist. I don’t have an appointment to see one yet but I do have an appointment for a podiatrist to phone me to assess if I need to see one. In July. I will find out if I can actually make the appointment I was told to make for 3 days ago in two and a half weeks.

Also this week I found out that you can fry gnocchi and I feel like I want to tell everyone. They’re so much better fried than boiled and although frying takes a little longer it’s still less than 20 minutes for the total cooking time including heating the pan up.

I haven’t done much writing this week. Partly because of Fibromyalgia, partly because of the multiple appointments that tired me out and partly because I am trash and I’ve spent my free time playing computer games.

I have to admit that I’m feeling kind of hopeless about my writing. Not because I think it’s bad but because I can’t imagine how anyone is ever going to read it. And also because this fight scene is making me want to buy actual swords and actually stab someone (not really).

See you all in a couple of days for the first Spoiler Club post, hopefully.

Fibro apology

There should be a cool new post going up here. I was really enjoying writing the inaugural Spoiler Club but my Fibromyalgia flared up and it’s gone for my left shoulder. That shoulder is one of my body’s weak links and I’m reduced to typing one handed.

I can’t do justice to the post I wanted to write at the moment. It will have to wait for another day. A day when both my arms are working and I don’t feel like I’ve got a knife sticking out of my shoulder blade.

That means you will all have to wait too and I’m sorry about that,

Sunday Update 05/05

This week I had a fun trip to the dentist. And by fun I mean deeply, deeply annoying. I was supposed to get an x-ray and possibly a filling but for some reason the dental chair wouldn’t recline when I was sitting on it, making a proper examination impossible. Now the chair worked fine when I was there for a check up just a month ago so I assumed that it couldn’t be my weight. I got the x-ray anyway since the chair didn’t need to recline for that but when I stood up and the dentist checked it again the chair reclined. I am officially too fat for my dentist.

I’ve been referred somewhere else that should have a chair that will take my weight. I have no idea how long that will take but the x-ray showed that I do need at least one filling. So I’ll just be sitting here with my teeth rotting while I wait to see if I’m too fat for dental treatment everywhere or if it’s just that one dentist.

In case you’re wondering exactly how fat I am that a dental chair won’t take my weight I am pretty fat. I am ‘can’t shop in most clothing stores’ fat. But I was that fat a month ago when the chair worked fine. I’m still wearing the same sized clothes.

I am also mightily pissed off that I might have to go back on the fucking diet just to get a filling.

Also this week I actually managed to wear my medical compression leggings several times. Of course that meant several days when I basically did nothing because I used up all my spoons just getting into my leggings. There has to be a better way to deal with the lipoedema.

I’m also having trouble with my right ankle. I’m not sure if it’s a fibromyalgia flare (in which case there’s no injury and it’s safe to walk on) or the lipoedema (in which case I don’t know if it’s safe to walk on) or if I’ve sprained something (in which case I shouldn’t be putting any weight on it at all). I sort of want to tough it out and just walk anyway but if I do that and there’s any underlying injury I might make it worse.

Procrastination Watch

There has been some good news. I finally managed to write about half of the thing that I’ve been trying to write for more than a month. Hopefully I’ll be able to maintain momentum and get it finished this week. If not then I might need to reconsider the idea of writing as a profession. If I can’t produce when I need to then how can I expect to get paid.

I also managed to finish a shawl that I’ve been making for my mother. I know that’s not writing but I’ve decided that crochet counts as work and not as procrastination. I followed that up by trying a new pattern for a shawl but I decided that it wasn’t working (not a problem with the pattern it just didn’t work for the yarn I was using). I decided to try a different pattern but the pattern is in German and the chart wasn’t very clear so I had to break out coloured pens and squared paper and re-do the chart before I could even start to frog the old one and restart. It’s a wonder I get any crocheting done never mind the writing.

Sunday Update 24/03

This week I have been struggling to get stuff done and for once it’s not because of my innate procrastination. It’s because my Fibromyalgia has been particularly irritating. I’ve been in even more pain than usual and muscle spasms have made my left arm pretty useless. It’s been incredibly annoying. Nevertheless I have managed to get some work done.

I’ve been staring down the barrel of my big fight scene for several weeks but now that I’ve got to it I’ve discovered that I’ve got much more already written than I thought. There’s still a lot of editing and some rewriting to deal with the change in cast but I might be closer to the end of this draft than I thought.

The downside to all this is that the work that I do have ahead of me is much more finicky. It’s much more about working out who is standing where and who knows what and who can see whom. Some of it is the kind of thing that you just don’t think about while you’re on the first draft. Exactly how do you draw butterfly swords? And how do you describe how you draw butterfly swords. I know what I mean by a reverse grip and thus a reverse grip draw but is that what it’s actually called?

The other thing I’m working on with this novel is the transitions of one scene to the next. I’ve found myself spending ages just staring at scrivener trying to work out if I really need to add another couple of sentences to this scene. Should I break it here and move to other characters or just go straight on with these characters? How much time should I skip? Should I attempt to follow them on this long walk from one scene to the next?

I’ve also been focusing on better ways to track my writing practice. I decided that I needed a spreadsheet to track how many words I write and how much time I spend on useful reading or on editing. However this means that I have to face how terribly I now am at using spreadsheets. Way back in the day, back when computer skills were still quite rare, I used to be ok at using spreadsheets. It was part of my job back when I worked in a lab. But I’m out of practice and technology has moved on and I had to download one that sort of does some of what I want. I think I need to do a course.

This week I’ve also been contemplating the many ways in which I am really quite bad at the internet. I’m ok for someone who was an adult before the World Wide Web was a thing but compared to the younger generations I’m terrible. I don’t really engage with it properly. I think it’s partly because I don’t like being judged and that’s not a great trait to bring to online spaces.

I belong to a lot of craft based Facebook groups but I almost never post on them. I’ve just never got into the habit of documenting the things that I make. Most of what I make never gets photographed. Even when I remember to photograph things I often don’t post the photographs and when I do post them I usually just post the photograph and the fact that I just made this thing. I don’t do the helpful thing of including links to the materials or the pattern.

With crochet in particular I often adapt patterns or create my own but I don’t document the process so not only can I not pay that back to the crochet community but if I want to make the thing again I have to start again from scratch.

I’m not sure how to be less crap at this. All suggestions gratefully received.

Sunday Update 17/02

This week I do not have writer’s block. Because writer’s block is not a thing. Also because writing isn’t the problem. Editing is the problem. Is there a word for that thing where you open Scrivener and jump back and forth between various scenes not changing them in any way and then minimise the window and play Minecraft instead?

I’ve reached the stage of editing where my current draft is like a tangle of yarn. When you’re untangling yarn you have to do it in the right order or you just end up making things worse for yourself. I’ve you pull on the wrong loop you just turn the rest of the tangle into a snarl. Maybe you end up with knots. Maybe some of the knots have to be cut out.

Writing earlier drafts has not prepared me for this. When you hit a problem with a first draft the solution is nearly always to just jump in and write your way out of it. When you hit a problem with a second draft the solution is usually to either change the order of scenes or write an additional scene. The worst thing that can happen is that you have a bunch of words that you can’t use in the current project or you spend five minutes fixing continuity.

I’ve already made editing errors on my current work in progress that have cost almost as much work to fix as an entire first draft. I had to rewrite a couple of scenes that I’d already rewritten once. Then I had to move one of them. Moving a scene this late in the project is not a five minute job. It causes a cascade of changes to other scenes and I have no idea if moving the scene was right.

At the same time as I’m working out how to move these scenes around and what needs to be changed to fit I still have major problems with the last part of the novel. Do I finish the rewrites of the earlier scenes first or do I fix the the last part? If I pick the wrong bit to work on then I could be creating more work for the future.

Or maybe I need to take a long hard look at my process. Maybe the real problem is that I don’t have a robust enough back up system so it’s hard to just revert to an earlier version?

The other thing I’ve been thinking about this week is sleep and how maybe I should stop trying to resist it and just go to bed every time I get sleepy.

When I first became ill, or at least no noticeably ill that I couldn’t continue to pretend that I wasn’t ill, I was diagnosed with Chronic Fatigue Syndrome (CFS). When I was later diagnosed with Fibromyalgia I just sort of assumed that I the CFS was a misdiagnosis. Now I’m not so sure. The waves of tiredness that have been overcoming me recently do sound a lot like CFS. Maybe I have both. Which means I have to do some research into the current thinking about CFS and how to manage/treat it.

It would be great if the next thing that goes wrong with my body could be something simple, treatable, and uncontroversial. I am so over chronic, untreatable disorders that a significant minority of the medical profession prefer to pretend don’t exist.

Sunday Update 20/01

This week I have spent a lot of time with planners and diaries, trying to organise myself.

I do not organise well. It does not come naturally to me. Partly because I find it hard to keep my mind pointed in any one direction for any length of time and partly because planning is pointless if you don’t have the resources to follow it through. But then everything I do is pointless so I might as well add planning to the list.

I’ve also spent a lot of time this week on Project Kindness, the spies vs gods novel that I’ve been working on. I realised that I had to go back and rewrite a couple of earlier scenes to make the point of view more consistent. When I’ve fixed those scenes I’ll be able to get back to finishing part six of the third draft.

I’ve been playing a lot of Destiny 2 on the PS4 and I think I have some thoughts about it that I want to blog about. Hopefully I’ll manage to do that this week.

Health-wise this week has sucked. I keep getting hit with incredible tiredness that seems to come out of nowhere and requires me to lie down and maybe go to sleep. When it hits I can’t keep my eyes open. I can’t tell if this is just the latest Fibromyalgia bullshit or if it means I’ve picked up some new health problem.

In fact I had to stop typing after that paragraph and go and lie down because I couldn’t keep my eyes open. Then I had to call my spouse to help me get my bra off because my triceps just weren’t working. I’ve noticed problems with my upper arms recently and I’ve been trying to stave it off with exercise. But there’s a limit to what I can do. I don’t have the energy to exercise much and if I push myself too much my arms will be useless for the rest of the day.

I wasn’t even trapped in a regular bra. I’ve mostly given up on those because I can’t reliably fasten them without help. The bra that tried to strangle me was a pull over the head sports bra. I’ve spent a lot of money on those as replacements for the already expensive bras that I couldn’t get on.

I now have a drawer full of expensive bras that I either can’t get fastened or can’t get off. I do not want to give up on bras, and nobody wants to see me out in public without one, but I’m not sure I can afford any more. If any of my spoonie sistren are out there and you have any tips on bras that are easy to get into and out of and will fit my mighty 44H chest please let me know.

The other thing I’ve been doing this week is research into self publishing, I’ve taken a few tiny steps in that direction. I still don’t know if it’s a path I want to follow but at least I now have a slightly better idea about what that path looks like.

So once again I have spent a week doing… stuff but I don’t actually have much to show for it.

A day in the life of a Spoonie

Let me tell you about how yesterday went.

I woke late in the morning and debated having a shower. I wanted the shower, I probably needed the shower but I didn’t have the shower because I needed to save the spoons for getting dressed and going out. I eventually persuaded my aching and uncooperative body out of bed around lunch time. But only because I had an appointment.

I had spent a week trying to get an appointment with a GP at my local practice but ended up settling for an appointment with a nurse practitioner. It’s not that I have any problem with nurse practitioners it’s just that I wanted a potentially complicated problem diagnosed and I think that’s something that doctors are better trained for.

I walked to the surgery even more slowly than usual because my left ankle decided to be a whiny little bitch. It was swollen and painful and it was like walking on a leg that has a spike through it. It’s the kind of problem that I often have to deal with and while it doesn’t stop me from going anywhere that I really need to be but it does slow me down and make me regret being alive. In the end I was only 3 minutes late which is not bad given that I’d got the time mixed up and thought my appointment was 10 minutes later than it actually was so in my head I was 7 minutes early.

Because my appointment was with a nurse practitioner I decided to shelve my original plan of saying something like “my hands are messed up and I’d like to know why” and risk raising the spectre of self diagnosis with “I think I might have rheumatoid arthritis in my hands and I’d like to find out and maybe get it treated while my hands still work”. The nurse asked my why I thought that and I was able to answer with some reasonable basis for my hypothesis – pain in my fingertips, leading to swelling in my finger joints, and hey this finger is crooked and no longer bends properly also my mother has rheumatoid arthritis.

I left with an appointment in 2 weeks to get blood tests and another one a week after that to discuss the results of the tests with a GP. The nurse also told me to try a low dose of ibuprofen to deal with the inflamation.

So I hobbled home and got some ibuprofen on the way. I don’t normally keep it in the house because I’m asthmatic and on the whole asthmatics should avoid NSAID painkillers like ibuprofen.

As I entered the pharmacy to buy the Ibuprofen I passed an older white man who said, in a petulant tone, “You’re welcome”. At first I was confused. Was he talking to me? There wasn’t anyone else around? I hadn’t asked him to do anything. I hadn’t spoken at all. He did stand back for a couple of seconds to let me enter before he left. Was he expecting me to thank him for waiting two whole seconds to leave the pharmacy? For allowing someone with a walking stick and in obvious pain to enter instead of pushing past me to get to the carpark? Who knows.

Got home. Now in absolute agony. Like incoherent with pain levels of agony. Decided that it was a good time to try ibuprofen, and also paracetamol (acetaminophen for American readers) and tramadol (synthetic opioid). That succeeded in killing most of the pain but then my eyelids started swelling up in a clear allergic reaction to something. Maybe the ibuprofen but maybe just pollen, I do have hayfever and I had just been outside.

Which was when I realised that I hadn’t bought any antihistamine the last three times I went to the shops. Because I’m a fucking idiot.

We searched the house in the hopes of finding some antihistamines somewhere but there were none. Which meant that one of us had to leave the house and go and buy some. And by one of us I mean me. I’d just spent more than a week trying to talk my spouse into leaving the house but social anxiety and agoraphobia is a nasty combination and the fact that walking anywhere causes them terrible back pain doesn’t help.

So I went back out again. Yes I went back out on my ankle that felt like it had a spike through it. Now with added swollen, horribly painful and not really working very well eyes. And I walked back to the pharmacy where I had bought the ibuprofen.

When I got there it was full of bastards. No, not really. Just full of people. That’s just how it felt to get there and discover that it was suddenly packed with people all of whom were in the queue ahead of me. And the reason for the queue was that the pharmacy was short staffed. So the queue wasn’t moving much. And everyone in the queue ahead of me wanted to complain about the queue. Which meant that the staff had to explain, yet again, about the staffing issue and then apologise for the wait before they could begin to deal with whatever the customer actually wanted.

And of course all the time I was waiting i was standing. On my ankle with it’s imaginary spike through it. Eventually I got to the front, spoke to the pharmacist and she sold me eye drops and tablets that I could safely take together. And then I just had to get home.

I’m fine today. Well fine-ish. Ok it was gone 3pm by the time I got out of bed, I still haven’t had that shower and it’s going to be days before I’m able to do much in the way of housework but I’m not actually dead and apparently that counts as a win.

Things are not going my way

Gentle readers I beg your patience while I rant for a bit. The last few days have not gone well and the next few aren’t looking great either.

I’m having a major Fibromyalgia flare up. For the last three days I’ve had a muscle spasm in my back so bad that the pain has gone through excruciating and into exquisite. I’m taking Tramadol, Paracetamol and vaping CBD and I still can’t bend without screaming. There is no comfortable way for me to sit, stand or lie. Part of the spasm is over my left kidney and if I started pissing blood it would be a relief because a kidney infection can be treated, kidney stones pass, even kidney failure can be managed.

Fortunately that’s distracting me from the sudden appearance of a hole in one of my back teeth. I think a filling might have fallen out. Or maybe a bit of the tooth has cracked off. I already had a dental appointment this week so that’s lucky. I’m trying really hard to believe that it’s lucky but it’s hard to think straight over the screaming pain from my back.

I’m still not back on my usual eating plan because of difficulty getting the shopping sorted. Between trouble with deliveries and the problem with my back and my spouse’s anxiety being too bad to do the shopping for me I’m having difficulty sorting out a coherent meal plan.

I’m having trouble getting anything done. I started this weekend with a book I’m wanted to read, a film I wanted to watch on Netflix, a film I’m trying to see in the cinema before it leaves a podcast I’m trying to catch up with and a novel that I’m trying to finish writing. In all I managed 15 pages of the book, neither of the films, 3 episodes of the podcast and about 2,000 re-written words of my novel. That’s pathetic.

And the worst of it is this feeling that my life is slipping away from me. Time is passing and I’m not doing anything with it. Precious seconds of my life are ticking by and I am variously paralyzed by pain, or depression, or indecision, or just lack of basic organisational skills.