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.

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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.

Diet and spoons

This week I lost the same 200g that I gained last week and lost the week before. I’m not complaining because I’ve had to step back from the diet plan I was following due to the ‘Beast from the East’ disrupting food deliveries.*

That’s not what I’m going to focus on today. I’m feeling a lot more thoughtful about how being a Spoonie ( a person with a chronic health problem, see here for an explanation of Spoon Theory) affects attempts to eat healthily.

You’d think that having a chronic health problem would make it more important that I stick to some kind of healthy eating plan and you’d be right. But you’d also be wrong because for us Spoonies everything has to be balanced. Any spoons I spend on meal planning are spoons I won’t have later should I need to pay some bills. Any spoons I spend on preparing a nutritious meal are spoons I can’t spend on cleaning up afterwards.

Often the Spoonie life means half assing a bunch of things because if you spend the spoons to do any of them properly it’ll be the only thing you do that day. All those partially solved problems become a cascade of further problems. So instead of doing the laundry OR cleaning the kitchen OR working on my novel I end up putting some stuff in the tumble dryer, wiping down one kitchen surface and fixing exactly one scene. So the next day I have laundry that’s not put away, a hob and a sink that still need cleaned and one slightly less shitty scene that mainly succeeds in making the rest of the novel looking bad.

Not that any of this means I’m giving up on my diet. I’ve got a doctor to prove wrong.

 

*For people outside the UK the ‘Beast from the East’ was a polar vortex weather system that plunged the whole country into arctic temperatures for a week. It wasn’t just that the temperatures were very low it’s that the temperatures were that low pretty much everywhere so the road clearing services were stretched very thin. It also didn’t help that so much snow fell that our usual tactic of gritting the roads so that the snow melts faster and vehicles can maintain grip was rendered useless.

Today’s displacement activity is…

Notebooks, and journals, and organisers.

There’s something so hopeful about ordering a new planner or diary. Particularly if it comes with some sort of promise to sort out your life and help you to ‘get things done’. When the thing arrives there’s all that lovely busy work involved in filling in details and making plans and committing to goals. It all feels so very productive.

And none of it fucking works.

At least none of it works reliably for me personally. Your mileage may vary. Possibly you, dear reader, are not disorganised trash like me.

Putting all my appointments in a Google calendar that is synced to my phone calendar mostly works. It’s at least 90% successful as long as I remember to put the thing on the calendar and set an alarm for a couple of days before. But it only works for appointments.

As a person with ADHD, depression and fibromyalgia I need to be organised. I need to plan ahead. As a person with terrible executive function problems I am shitty at planning ahead. It’s not unusual for me to get up at the crack of 2pm and spend half an hour setting goals and making lists of the stuff I need to work on to achieve those goals and then immediately go and do something else instead.

I am so bad at following through that I could make a todo list that includes reading a book that I’m supposed to be reviewing, catching up with the Unbeatable Squirrel Girl comic and eating some chocolate and it would lead to me scrubbing the kitchen sink.

It’s starting to feel like I only ever achieve things by accident. I’m pretty sure that my 9+ first drafts and my one completed novel only exist because I was supposed to be tidying the house. I’m wrapped in a crochet shawl that only exists because I was supposed to be editing. I’m blogging because I just decided to crochet a hat. Earlier today I cleaned the hob rather than blog.

And it wouldn’t be so bad if I was doing any of these things properly. But i’m not. My books aren’t published, my blog is kind of bland, my kitchen is still a mess and my crochet mainly results in me spending too much money on yarn. But I recently backed a kickstarter for a really nice planner and this one has a SYSTEM. Surely this is the one that will finally work.

 

If you have enjoyed this post then why not buy me a coffee with Ko-Fi?

Another Bloody Diet Post

I have gained 200g. That’s the same less than statistically insignificant 200g that I lost last week. This week I’m menstruating so it could easily be that.

I am thoroughly pissed off with this diet. It’s partly because I’m not happy with my attitude to food right now and partly because the “Beast from the East” is making it impossible to properly plan my shopping.

I’m disabled so I rely on food deliveries to get the bulk of my groceries. I get a few things locally but my condition is variable so I can’t rely on being able to get out to the shops. So I can get a bit intense when Sainsbury decide to cancel deliveries with no notice or warning. Not even an email to say “No food for you. Soz,” with a handy ‘reschedule for a day when the weather isn’t trying to kill us all’ link to click on.

My options now are to come off the diet and eat all the store cupboard stuff that doesn’t really fit it until I can get a delivery or to go on the ‘I can’t eat anything because Sainsbury is run by bastards’ diet. Or find out how many of the local takeaway delivery drivers are nuts enough to be driving in this weather.

Wish me luck.