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.

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Sunday Update 13/01

The first Sunday update of the year.

As I mentioned very briefly in the last update of 2018 I did get a new writing chair. It’s a proper rise and recline chair that allows me to write with my feet up and will help me to stand when I need it. Writing has been so much easier with it. Everything has been easier.

The chair was super expensive. I was only able to afford it because years ago I had a credit card with a somewhat shitty company that got in trouble with the Financial Services Authority and was recently forced to send refund cheques to a bunch of people. I spent mine on a chair that I absolutely need but could not otherwise afford. I should have been able to get one on loan from the Occupational Health department of my local council but there aren’t enough to go round.

At the moment I’m working on Project Kindness – the sexy spies and Celtic gods novel that I’ve was working on for most of last year. It’s been interesting to get back to it after some time working on other stuff. I’ve realised that there’s two massive scenes that need complete re-writes to change them from novel equivalent of a floating camera to the novel equivalent of a following camera and a voice over.

The annoying thing about the change is that I don’t think the new version of the scenes will be as good. I’m doing it partially so that they’re more consistent with the rest of the novel and partially because narrative conventions have changed and I’m unlikely to hook an agent if the first 40 pages of my novel contains the sort of sweeping ‘camera shots’ that used to be fairly standard narrative devices.

The other thing I’ve been working on is planning. I’ve been pouring over my two (2) new diary/planner things. One is focused on writing, the other is more generally focussed on setting and reaching goals.It’s too early to tell if I’ll be able to stick with either of them or if they’ll be any good to me. In theory structure and order are the best thing for someone with ADHD but they’re also the absolute hardest things for someone with ADHD to impose on ourselves. Kind of like how the best treatment for eating disorders is moderation. If we could eat in moderation we wouldn’t have eating disorders.

Welp I’ve hung around depressing myself for so long that this blog is now late. I’m starting this year as I mean to go along.

Sunday Update 09/12

I am still fighting off a virus and it has robbed me of most of my spoons so apologies if this post is short and incoherent.

Everything hurts. I am exhausted. I’m even too tired to be angry that Jack Dorsey of Twitter thinks that mediation might help people with chronic pain. Today it took me an hour of meditation to martial my resources enough to close the blinds.

I have to go to an education meeting at my son’s school tomorrow. That means I have to be awake and vertical and dressed and if at all possible showered as well. Today it took me an hour to close the blinds.

I have to go to the meeting even though there is literally no point in me being there. Nobody in the meeting will care about anything I have to say. None of the information they give me can be used for anything. My only purpose in being there is so that I can say I went. If I didn’t go then the meeting would be slightly shorter and that’s the only difference my absence would make.

When things are this bad it’s like being trapped inside a giant robot body that you don’t understand and can’t make work properly. There’s a million things I should be doing right now but I’m stuck in here trying to get the alarm signals to turn off at the same time as working out why the arms won’t do anything.

But at least I have a new writing chair so that’s a thing I’m trying to feel good about.

Are my Wednesdays cursed?

Last Wednesday I had an incredibly shitty day and I wrote about it here. This Wednesday I spent the day in crippling pain. The kind of stabbed-in-the-hip-with-a-rusty-breadknife, 50-point-IQ-drop, can-barely-spare-the-brain-cells-to-speak sort of pain that people really don’t want to hear about when they ask you how you are. It was the kind of pain where sitting hurts, standing hurts worse, and laying down is by turns either much better or much worse.

And then my chair broke. My writing chair. The only chair in the house from which I can type and put my feet up. I was too tired and sore to work out what was wrong with it so I went to bed. This morning my other half tried to fix it and found out (by sitting on it) that the central post it swivelled on was completely sheared off.

So my writing chair is broken beyond repair. I have no money for a replacement. It’s NaNoWriMo in five days. I don’t even know anyone I could borrow the money from. I can’t ask my mother. She’s still in hospital and she’s gong to have to spend thousands on handrails and a stairlift so she can go home.

The most annoying thing is that I should have a chair. Local Councils are supposed to supply equipment to disabled people who need them. I used to have a rise and recline chair that was perfect for my needs but I had to give it back to the Council when I moved. In my new area there are so many people who need them that the Council only lends them to people undergoing end of life care at home.  You need to be literally dying to get a comfy chair.

If you’re wondering why I don’t just go and buy one of these fancy chairs it’s because the kind I need starts at £1800. That’s why I had to pay for a cheap and shitty one that lasted just under two years and now I can’t even afford a cheap and shitty replacement.

So here’s my Ko-fi link. But don’t feel bad about not clicking it. Even if every single reader clicked through and donated the cost of a cup of coffee I still wouldn’t have enough to buy a new chair. I’m only doing this so that when I complain and people ask me if I’ve tried asking for money on the internet I’ll be able to say yes.

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.

The pain difference.

I’ve been thinking this week about pain. For most people pain is an alarm signal from their body. It exists to bring attention to something gone wrong or as a warning to not do that thing again.

For those of us with chronic pain conditions that signal can be a constant background noise. When an alarm sounds constantly it becomes stripped of its meaning. It doesn’t stop being irritating but it does get downgraded from a stab of panic, and the accompanying burst of adrenaline, to a dull, grating, near-constant anxiety.

For the most part it’s not pain that stops me from doing things. Almost everything I do is painful. Some days are more painful than others and some kinds of pain are more tiring or distressing than others but that’s not the problem. It’s the mental strain of dealing with the pain that holds me back.

And for most people with a chronic pain condition there’s also the lying. Or perhaps I should call it acting or maybe pretending. There’s usually no point in telling people how much pain we’re in. They can’t do much to relive it and most of them don’t really care. It’s impossible to prove that we’re in that much pain so it’s easier for them to believe that we’re exaggerating.

There’s an underlying assumption that comes with civilisation that all problems are soluble. That’s why so many people want to believe that ‘Big Pharma’ is covering up a cure for cancer and that most unemployed people could find work if they just had the gumption. It’s so easy to fall into the trap of believing that we are the masters of our fate. People like me are proof that bad stuff can happen at any time and for no reason.

Most of us cover our pain up. We don’t talk about it. We minimise it, downplay it and lie about it if we have to. Sometimes we do that when people could help. Sometimes the pain is less painful than watching someone else feel bad about the pain. And there’s always the fear that if you’re honest about the pain that you’ll drive people away. Either because they don’t want you to be dependant on them or because they can’t bear to watch you suffer.

Well I think I’ve depressed everyone enough for one day. You may now go back to whatever you were doing before I distracted you. But if you feel like buying me a coffee to cheer me up you can visit the Ko-Fi website to do it.

Once again my body betrays me

Yes it’s a very dramatic title. Unfortunately it’s also true.

I am typing this very slowly because there is something horribly wrong with my right thumb. Yes I am right handed. How did you ever guess?

My thumb is swollen, itchy and sore. It won’t bend properly and it looks like the knuckle has somehow slipped round the side of it. It’s incredibly distracting and it means that I can’t do any of the things I normally do to fill the day. No computer games, no crochet, chores are even harder than usual and typing anything takes ages.

Yes I have sought medical attention. The current working hypothesis is that there’s an infection under the skin and pressing on the joint. I’m back on antibiotics. If they don’t work by Friday there will be blood tests. It might turn out to be gout. Because my body never met an embarrassing and poorly understood health problem that it didn’t want to try out.

Which is all very annoying because I should be working on the novel I want to pitch for Blood Scotland. Or the pitch. And I’m not. Because just typing this little bit has fucked my right hand up even more.

Writing Fat Women

Recently on Twitter much fun was had with the idea of women writing ourselves as a male author would. I couldn’t join in because I’m a disabled fat middle aged women and that means I’m invisible to most male authors. And actually a lot of female authors. And when they do write us it’s as comic relief.

I did get to join in with the “write yourself as you would write you” challenge but that left me wondering why I write so few fat characters. I think the truth is that I don’t trust myself to write fat characters. I’m worried that my own body image issues will creep through and I don’t want to put any more fatphobia in the world.

Perhaps I’m also subconsciously feeling like I’m the wrong person to write that kind of acceptance and diversity. I shouldn’t write positively about fat women because I’m a fat woman so it doesn’t count. But if I don’t do it then who will? There’s not a lot of skinny people queueing up to write warmly about fat people. Able bodied people tend not to write about the disabled, particularly not those with chronic pain. And neurotypical people are really bad at writing neurodiverse characters.

But then there’s a part of me that resists that. Don’t I get to write my fantasies of a life without pain, a life of full mobility, a life where I don’t have to spend every waking moment justifying the space I take up? I deal with that shit all day every day and now I have to write about it too? How is that fair?

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If you’re the kind of masochist that enjoyed reading this rant why not buy me a coffee.

Health update

I have decided that the regular diet updates were as boring as hell. I don’t want to ditch them entirely but I want to change the focus. I think my overall health is more important than my weight. And I’m sick of this blog getting followed by diet and weight-loss blogs.

Some of you will be thinking ‘I bet that means she’s put on weight again’ but no. Actually I’ve lost half a kilo which is just over a pound so my total weight loss is now just over 15kg (33 pounds). I don’t know how. I’ve not been sticking to the strict eating plan and I’ve hardly been wearing my compression tights so I don’t think it’s all fluid. All I can say is that my body continues to be a mystery.

No news on the replacement compression hosiery. I hope they’re going to arrive soon but it’s possible that they’ve been doubly delayed by the weather. Either that or the manufacturer has lost the order again. Not much going on with exercise because of the fibromyalgia flare up that caused the horrible back spasms. My back pain might be easing off but it’s too early to be sure. It could just be lulling me into a false sense of security.

In mental health news I’m doing an excellent job of seeming ok but I’m having serious executive function problems so I know that something is not right. Or maybe it’s just the same thing that’s never been right and I’m just less tolerant of it than usual.

In creative news I’ve got some excellent ideas for the sequels to the completed novel that I was querying and to the novel I’m finishing off. Sequels are great in theory but if I don’t get those novels published then they’re just more wasted effort.

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.