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.

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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.

 

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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.

2018 Diet Update 3

This week I lost 1.3kg (just over 2 and a half pounds). My total weight loss is now 14.4 kg (31.6 pounds or 2 stone, 3.6 lbs). After experimenting with the positioning of my scales I can be fairly sure this is genuine weight loss but of course much of this week’s total will be down to fluid being forced out of my legs by my compression tights.

Wearing my compression tights continues to be a massive pain in the arse. And everywhere else. Just getting them on uses most of my spoons meaning that I don’t have much left over for chores or writing or working on the thing I’m crocheting for my daughter’s birthday. Or even for reading the book I’m reviewing.

More and more I’m questioning why I’m even on this fucking diet. Let us not forget that calorie restriction is not a treatment for lipoedema, that my value is not inversely proportional to my size, and that no level of weight loss is going to magically render me decorative enough to be societally acceptable. I only got on this damn treadmill because weight loss is a hoop that I have to jump through in order to access the treatments that actually do work.

I am trying to commit to more exercise. Not to lose weight but because I want to be stronger. I’m thinking of taking on a 100 squat 30 day challenge. The idea is to work up to 100 squats a day (any kind of squat counts) and then keep it up for 30 days. I have no idea if this is a good idea but I do think it’s important to have goals.

My problem with body positivity

Strictly speaking I have two problems with body positivity. One is definitely my problem. I think the other is a problem with the movement.

Let’s talk about my problem first. I’d rather own my problems before I go pointing out other people’s. My problem is that I find that I cannot love my body. At best we exist in a state of détente but most of the time we are at war. I hate how it looks. I hate that it’s never comfortable and that I am never comfortable in it. I hate the constant negotiations to get it to do anything. Most of all I hate how limited that anything is.

I want to be strong. I want to exercise. I want to go for long walks. But I can’t lift weights today because I put my compression tights on and apparently that’s me done for the day. As I write this my hands are still shaking just from the effort of getting dressed. How dare they.

And this, of course, creates a secondary problem. Because people keep telling me that I should love my body and I just can’t I feel like I’m letting the side down. Not only am I failing in my patriarchal duty to be decorative I’m failing in my feminist duty to love myself. I’ve failed to be thin and now I’m doing fat wrong.

Now let’s talk about my problem with the body positivity movement, and specifically the ‘healthy at any size’ part of the movement.

Because some of us are not healthy. Some of us are fat because we’re sick. Some of us are fat and sick with no causal link. And then there are people like me. People with lipoedema and similar disorders. People with dysfunctional fat cells that we can’t get rid of. We’re not sick because we’re fat, it’s the fat that’s sick.

I’ve written before about lipoedema. It affects up to 11% of women and post pubescent girls. It’s triggered by hormonal changes. It’s progressive. In many cases, and I am one of them, it is painful and debilitating. Our bodies lay down dysfunctional fat cells that don’t work as an energy store. These cells hang around in the wrong places, trapping fluid, putting pressure on our joints, and causing pain.

Before anyone slides into my comments to tell me that I just need to eat less and move around more my anorexic thirteen-year-old self would like to have a word with you. And she’s carrying a cricket bat. I’d run if I were you. No, faster than that. She’s spent the last 4 years running from people throwing rocks at her head so she’s a lot faster than me. No don’t stop for a rest she’s got plenty of stamina. Try to find some flowers. If she gets a lungful of pollen she might have to stop for an asthma attack.

But back to body positivity and my problem with it. I feel stuck. The lipoedema support groups are full of internalized fatphobia and people whining about how they should be immune from societal fatphobia without ever questioning that it should exist. The body positivity groups erase my experience of being disabled and fat. The insistence that fat women are hot just reinforces the patriarchal assumption that whatever else a woman is she must also be decorative. What if I don’t want to be decorative? What if I want to be a dapper androgynous badass?

Can’t I want to get rid of my dysfunctional fat while at the same time supporting your right to look however you want to look? Can’t we all agree that how people feel about how a person looks has nothing to do with their value as a human being? I just want to be in the world without the feeling that either I have to cut parts of myself off or excavate a me-shaped hole in order to fit in.