Sunday Update 03/02

This week I have been mainly dealing with Executive Dysfunction. It’s a thing I’ve mentioned before, somewhere, but I can’t be arsed finding the previous blog posts. Or maybe that’s the Executive Dysfunction talking.

This is a disorder where you want to do a thing and you’re capable of doing the thing and you’ve decided to do the thing but you don’t actually do the thing because the part of your brain that does the deciding (the Executive) can’t properly communicate with the rest of your brain. Humans tend to assume that we have unfettered free will, so we often think it’s procrastination or laziness. We think that the reason we’re not doing the thing is because we’ve decided not to do the thing, even if that’s clearly not true.

Executive Dysfunction is commonly found in people with ADHD, particularly adults who were undiagnosed as children. It’s also found in people with Depression or on the Autism Spectrum. It leads to this horrible feeling of unworthiness. This sense that you’re fundamentally unreliable which itself leads to a fear of committing to anything because you’re so scared that you’re going to let people down.

You might be thinking that my Executive Dysfunction can’t be all that bad because here I am writing a blog post. Well… I’ve got two emails that need replies that I somehow haven’t written even though I’ve had two days. My travel coffee mug got broken and I should be looking online for a replacement but I’m not. I should be working on my spy novel but I’m not. I have a bunch of finished crochet that I need to parcel up to send to people and it’s a month late. I have a pair of crochet mittens that just need to be sewn up to finish and they’ve been sitting around for two months. If I turn my head slightly I can see a bunch of cardboard boxes that should have gone out to the paper recycling bin weeks ago.

Of course part of the problem for me is that, because I have a chronic pain condition, I have an invisible extra step between deciding to do the thing and actually starting to do the thing. The act of will required to disregard how much additional pain doing the thing might cause. It’s a lot harder to just get up and take the cardboard out to the bin if you know that there’s a significant chance that getting up will feel like you’ve been stabbed.

It’s kind of amazing that I ever get anything done at all. Or maybe it’s just amazing that I am somehow still going in spite of being such a disaster.

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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.

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.

The consequences of falling down.

Last week I fell in the shower.

My able-bodied readers will probably be a little worried by that statement but reassured that I must be fine if I’m blogging about it. My spoonie readers will be wincing. Us spoonies know how particularly awful it is to fall in the shower.

Allow me to explain. I fall over a lot and I’m rarely injured because I know a little about falling safely. But when you fall in the shower no amount of breakfall technique will save you from injury because there just isn’t the room. When you fall in the shower it will be awkward, you will hit something hard, your body will get twisted.

The second big problem with a shower fall is getting up afterward. You’re on a smooth, wet surface that’s covered in soap. You are also wet and covered in soap. And so are all the hand holds. There’s not enough room to roll over and get onto your knees so unless you fell that way round you’re going to have difficulty getting to your feet. That’s assuming it’s even possible to get up.

In my case it was a close run thing. I twisted my right leg badly and injured my good knee (let’s be honest it’s really only the slightly less shitty knee). I couldn’t get my weight onto my feet. I couldn’t roll over. I had to inch out of the shower stall on my bum, get to the top of the stairs and use the top step to get to my feet. It was horrible. It’s been more than a week and my knee might actually be getting worse.

You might wonder why I haven’t been to the doctor for treatment. That’s because there’s no point. I know from experience that they’re not going to do anything. If I had been forced to call an ambulance to get me up they might have x-rayed my knee but since I haven’t broken anything nothing would have showed up. I’ve probably done some horrible soft tissue damage but since I’m not a hot young athlete there’s no possibility of surgery. Nobody cares how much pain you’re in when you’re an impoverished, fat, old woman.

My knee will either get better or it won’t. There’s not much I can do either way.

Dispatch from planet pain

It’s been a while since I wrote anything about living with a chronic pain condition so it’s time for another update. What fun!

The thing about a variable condition like mine is that while the pain never truly goes away it can sometimes lull you into a false sense of security by being less horrible for a while. And then it comes back full force and you remember why your life sucks.

I’ve been having shoulder trouble for a few weeks because I had dared to enjoy myself by playing video games. I cut right back on that and stretched more and just put up with the pain which is how pain management actually works. It doesn’t solve the problem it just helps you to live with it. Which usually means living less.

That’s not the pain I’m writing about now. Though now I think about them my shoulders do feel like I’m wearing lead epaulettes and I wish they’d stop.

Today I woke up and rolled over in bed and I really wished I hadn’t because it feels like some psychopath filled my pelvis and lower spine with broken glass. Holy crap it hurt. It’s still hurting. It’s hurting a bit less because I’ve taken paracetamol (acetaminophen for American readers) and vaped some CBD (cannabidiol, and yes it is legal in the uk).

What I want to say is that if you know someone with chronic pain and you see them smiling and moving around and apparently fine that doesn’t mean that they’re not actively in pain right now. It just means that compared to how much pain they have been in it’s no biggie for them.

If you also have chronic pain and you’re wondering about the CBD here’s the details. It’s legal in the UK. In the US it’s more complicated. In theory it’s legal at the federal level as long as there’s no THC in it but local laws vary.

I get mine from CBD Life, which is a UK based company though they do ship to other countries. I can recommend their vape liquid and their customer service but I have no first hand experience of their other products. That is an affiliate link. If you buy stuff from them I’ll get money off my next order, because I do buy and use their stuff and I want to buy more.

 

And if you want to buy me a coffee, because coffee does help with pain management, you can do it through Ko-fi.

The inertia paradox

It’s very hard for me to get anything done. With depression, ADHD and chronic pain all pulling me back it takes a tremendous effort to achieve anything. Anything I want to do seems to involve far more steps than it should and each one of those steps requires a run up and that run up requires overcoming my executive dysfunction. Something that should take a week ends up taking six months.

I’ve been assuming that this inertia was the big problem with my life. I thought that if I could just do the things I wanted to do that I would experience success of some kind. I thought that it would be possible to get something back out of life if only I could work out how to put enough in.

I’m starting to suspect that I was wrong and that the inertia was really protecting me from the inevitable disappointment. I look back at my life and I see a lot of me working hard on something, fighting to overcome the inertia, doing the thing I wanted to do, and then nothing. It never goes anywhere.

Presumably I’m doing something wrong. It’s tempting to blame the inertia. It’s tempting to say that the inertia leaves me too tired to make the thing into a success. But maybe it’s not that. Maybe it’s that I’m just not very good at anything and the inertia knows. Maybe the inertia is trying to save me from the pain of being deeply mediocre.

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.

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.