My annual Spoonie scald

When you’re a Spoonie ( person with a chronic life limiting illness but see the link for more details) people tend to assume that your problems all come directly from your illness without ever seeing how the secondary problems proliferate.

You’re in pain and the pain means you can’t sleep and the lack of sleep causes its own problems. The constant mental work of managing your very limited mental resources end up costing more of those resources. Your coping mechanisms have coping mechanisms.

At least once a year I burn or scald myself because my brain is on automatic pilot and I’m trying to do something that’s necessary for me to function.This time I stuck my whole right hand into my coffee filter cup while it was full of near boiling water. Then tipped the whole thing, grounds and all, all over the kitchen. Then I forgot I was wearing rings and had to strip them off after my fingers had started swelling.

I got lucky. Most of the swelling went down with a combination of cold running water as long as I could stand it and then sitting with an ice pack on the remaining swelling. But it’s annoying. And I never got my coffee. And I have a enough swelling on my right ring finger that it’s put a serious dent in my typing speed.

Now there’s no obvious line between Fibromyalgia and a burn. But I’m pretty sure that this burn happened because one of the consequences of Fibromyalgia is having to go about my day with a considerable portion of my brain either distracted by pain or working to manage my symptoms or my spoons.

Most of the Spoonies I know pick up multiple injuries a year as a result of their primary condition. Falls because their balance is wrecked, scrapes because they’re not fully aware of their surroundings, self inflicted cuts caused by trying to prep food while half asleep. And the worse bit usually isn’t the physical injury. It’s feeling like an idiot. Here I am, a full grown adult, and I stuck my hand in scalding hot water out of my own incompetance.

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What to do, what to do?

I have one halfway valuable talent and it’s writing. It’s not the only thing I can do but my other talents are either valued even less or require even more investment or are just too exhausting for a Spoonie like me.

In theory it’s never been easier to get your writing in front of people. Getting paid for your writing is another matter entirely. I’ve been lucky so far, if by lucky you mean basically cursed, because I’m disabled enough that the government gives me money. That means that I’ve been able to write without needing to get paid immediately. I could look on my writing as an investment that would pay off eventually.

I’m now getting to the point where eventually needs to be soon. But I’m starting to feel like eventually is going to end up being never. With each passing day I have less and less hope that I’ll be able to get published via the traditional route. My only other option is self publishing badly and sending my precious story out to die with all the other half assed self pub books. I don’t have the skills or the money to do it properly.

Every time I think I’ve found a way to turn my skill into income it just evaporates as soon as I get close. Self publishing in’t the cake walk that some people would have you believe. Patreon have just said they don’t want people like me, if you don’t already have a huge following they’re not interested, Kickstarter is for people with plans, I’ve yet to find an even slightly ethical way to make money from any blog that I’d be able to write.

I spent more than half my life desperately wishing that I knew what to aim for. And now I know. And I’ve been working towards it steadily for 12 years and it feels like I’m no closer than I was at the start.

So I don’t know what to do. I’ll keep writing as long as I have a device to write on and I’ll keep blogging as long as I have a device and internet access. Maybe the problem is just that I’m not good enough yet. Maybe I’ll stumble into something interesting enough to say and everything will change. Probably not though.

It might be time to stop editing what I write. I write because I have to. I edit because I want to get paid. If I’m not getting paid now and there’s no hope of getting paid eventually then why am I editing?

Diet Update 13

This week I put on a kilogram. I stuck to the diet all week long. I was well under my limit most days. I still gained a kilo. FUCK MY LIFE.

I suspect that it might be down to fluid. My right leg is really swollen at the moment. Like having difficulty getting into leggings that fit just fine 10kg ago swollen. It feels like a fucking balloon and my right knee is being a whiny bitch about it. I’m used to it complaining when I stand or sit but now it’s complaining while I’m in bed. Bitch, I am literally horizontal what more do you want?

It’s so frustrating to spend so much time and effort on this damn diet and get so little back. I don’t know what to do. I don’t have a plan except to keep going. The only other thing I could do would be to cut back on the carbohydrates even more but I really don’t want to do that because it’s just so miserable.

Hopefully it won’t be too long before I get referred to someone who can do something about the fluid.

Is depression a choice?

Yes. But not the way you think.

I’m aware that I’m taking a risk starting like this but so be it. If I want to speak to the people who need to hear this I have to start this way. Some of my readers are going to feel attacked but please bear with me.

Depression is one option on a multiple choice test. For some of us this test is an occasional annoyance. For others it gets delivered every goddam day. The test looks like this:

Pick one option only

  • Denial
  • Substance Abuse
  • Suicide
  • Depression

Everyone starts out ticking the Denial box. Nobody wants to be depressed. Depression sucks. So you tick that Denial box. And then you tick it the next day and you keep on ticking it. But it gets harder. The box goes grey and then black and eventually no matter how hard you press down on the paper your mark won’t show up.

For some people that’s enough to go straight to the Depression box but some people think that’s for quitters. So some people go to option two.

Choose your poison. There are so many ways to pretend you’re not depressed. Alcohol will cover it up and the next day when you feel like shit you’re not depressed you’re just hungover. Hair of the dog will sort you out. If you don’t like booze there are so many drugs out there. Some will take high enough so you can’t feel the depression. Some will take you down so low that you won’t care. And if you don’t trust drugs there’s always food. Suffocate those damn feelings under handfuls of sweet, sweet food.

But over time the Substance Abuse box keeps getting bigger. It gets easier to tick. Eventually it gets it’s own denial sub heading so that you can deny that the substance abuse is a problem. And then comes the day when you realise that the words ‘Substance Abuse’ are written on a label. They’re covering something up. And when you scrape or peel the label off you find that underneath it is the word Suicide. Because substance abuse is just suicide the long way round.

That Suicide box is always tempting. It’s practically talking to you. Telling you that if you tick it right just once you’ll never have to worry about the damn test ever again. Some days that box is huge.

But if you care about the people around you that option is out of the question. So you move to the bottom of the test and you tick the Depression box. The hardest one. The one that means admitting there’s a problem. The one where you seek help and take pills and talk about your damn feeling. The one where you have to practice self care instead of pretending that you don’t exist. The one where you have to cut the toxic people out of your life. You’ll know the toxic people because they’re the ones telling you that you’re selfish or weak for ‘choosing’ to be depressed.

Diet Update 11

This week I put the half kilo I lost last week back on. I know why it happened. I had a cheat day at the weekend and I made one very bad choice and that resulted in eating a whole large pepperoni pizza.

If anyone thin is wondering why there are so many fat people in the world and why so many diets fail and why we make such a fuss about weight loss and act like it’s hard when it’s just eat less and move more let me explain. I made one bad decision and it cost me two weeks of progress. Now it was a very bad decision and I should have known better but it was still one decision. One pizza. Two weeks.

This is why you’ll sometimes see someone break a diet in an apparently small way and then act like it’s all over and there’s no point and I’m just going to go and inhale this entire cake. That’s not sensible or entirely rational but when a single decision made in a moment of weakness and tiredness can ruin two weeks of effort I think it’s at least understandable.

I think it’s particularly understandable given how little return we can get for our effort. Until this reversal I’d lost 10kg (22 pounds) and my reward for that success was that my rings keep falling off and my face looks a bit thinner. That’s it.

Don’t worry about me though. I’m back on the diet. I’m developing a better handle on how far I can push it on a cheat day without reversing my progress. I now know that the sweet spot is somewhere between a panini and a whole pizza.

 

The Fucking Diet page.

Diet Update 8

After a very active weekend during which I had a couple of days where I ate less than half my allotted calories I have lost a whole 400g (just under a pound). And I’m in agony. And feeling like shit.

But at least I survived a 3 days of my Mum insisting that I should have a biscuit because they’re only small. She did make sure to tell me that she’s super proud of me for losing weight. It’s nice of her to say so but it doesn’t change the fact that the weight loss is meaningless.

Tomorrow (as I write this it’ll be yesterday by the time it posts) I have an appointment at the leg ulcer clinic. I don’t have a leg ulcer. I assume this is my Doctor trying to get me compression wraps. I predict that I will yet again be sent home with nothing but we shall see.

[Edit: I was not sent away with nothing. I got an actually useful referral. Yay!]

Last update. Diet Page

Diet Update 6

This week I have gained 200g. That’s not a lot. Less than half a pound. But it’s the wrong direction.

It’s particularly galling because I have had a thoroughly miserable week sticking to this fucking diet. I have not gone over on calories but I have been much closer to the line and I did go over on carbs on Friday and Saturday. That could mean that the weight gain is down to to fluid but I’m not going to rely on that.

In the future I need to be more careful with carbs, and I need to work on the assumption that either MyFitnessPal is too generous with calories or there’s stuff I’m eating and forgetting to track and not get too close to the line with Calories.

And I need to drink more coffee. I need to get back into the habit of defaulting to a decaf if I get hungry late at night.

EDIT: I weigh myself on a Monday and then write up the diet update but set it to post on a Wednesday. I do this because no-one else should have to deal with my dietary bitching on a Monday. But it does sometimes mean that the information is out of date by the time it’s posted.

When I weighed myself on Monday my weight was up by 200g. When I got curious and weighed myself on Tuesday it was down by 1.3 kg ( that’s nearly 3lbs). I can’t have lost that much fat in 24 hrs so the difference must be down to fluid. As someone with both lipoedema and lymphoedema I can carry a lot of excess fluid. It could also be down to the difference between having eaten enough carbs to have stored some glycogen and having used up the glycogen and not eaten enough carbs to replenish the stores.

All the Diet posts.

The truth about depression

The worst thing about depression isn’t that it lies. It’s that it keeps telling you uncomfortable truths until you’re too weak to keep saying “so what”.

When my depression tells me that no-one will miss me or that the people I care about will be better off without me I know that it’s lying. No matter how worthless I am they would miss me because they are good people and my death would hurt them because they’d feel like they failed. Clinging on to that has kept me going. I’m not living for me and I haven’t been for years.

When my depression tells me that none of that matters in the grand scheme of things it’s not exactly lying. My life and the lives of everyone I know are meaningless when placed against the span of human history. All of human history is insignificant in the whole history of life on our planet. And that’s just on a local scale. Our whole solar system is not even a mote in the eye of the universe. Sometimes it’s a comforting thought. I am so insignificant that there’s a real limit to how badly I can fuck up.

When my depression tells me that I don’t matter that’s old news. When it tells me that the Universe is huge and ancient but still young and that it’s impossible to conceive of how brief and tiny my life is by comparison I can agree. But when it starts to say that’s also true about everyone I care about then I have a problem. I’m only living because I don’t want to hurt them. But if their pain is unimportant then there’s no reason for me to keep going.

I’m going to stop writing this now. I have no idea if it’s making any sense. The depression is very bad right now and my brain isn’t communicating with itself very well.

Photobomb

I made a terrible mistake this week. I looked at a photograph that I was in. It was a group photograph and those don’t usually hurt so much but for some reason the photographer put me in the front.

I’ve always hated being photographed. When I was a kid I hated it because it invariably involved some adult shouting at me to look happy and not squint while I stared directly at the sun and waited for my brothers, or cousins or peers to stop making stupid faces. In the 70s and 80s every adult seemed to believe that photographs could only be taken in bright sunlight with the sun shining directly in the faces of the subjects.

As I got older I began to hate being photographed because I knew that I would ruin the finished picture just by being in it. I hated how I looked in real life and I hated the photographs even more because they were proof.

I tried to be behind the camera whenever possible. If I was behind the camera then the sun was at my back and not on my face. If I was behind the camera I wouldn’t later be faced with the full horror of whatever I was wearing, or whatever terrible haircut I had, or the fact that in spite of all my dieting and prayer I was still fat.

Besides the pictures were usually better if I took them. I am a competant ammature photographer. I’m not talented and I’m certainly not professional but I spent a lot of time trying to be an artist and I did learn a few things. I know enough about composition, proportions and framing to take a picture that looks like it was taken on purpose.

When I first realised that I hated how I looked I thought that it was just me. I thought that I must be uniquely hideous and everyone else was fine. But then I noticed other people complaining about how they looked or trying to avoid cameras. I decided that most people must hate their appearance, even the beautiful people, I thought that maybe it was a kind of self-consciousness and that most humans had it.

Then the selfie became a thing and I realised that when most people complain it’s either because they’re scared of looking vain or they’re objecting to a particularly bad photograph. Most people seem not to think that they look hideous in every single image, and also in the mirror, and in every reflective surface they pass.

And the worst thing is that I can’t stop looking. Every time someone takes a picture of me there’s this terrible stab of hope. Maybe this will be a photograph where I don’t look like a cone wearing borrowed clothes sitting on top of a pair of misshapen tree trunks. Maybe they’ll have found the precise angle where my face doesn’t look like a Wicked Witch of the West themed Mr Potato Head.

Actually that’s not the worst thing. The worst thing is that I care. Why do I care? I don’t care what anyone else looks like. If one of my friends got beat with the ugly stick and then inflated with a tyre pump I wouldn’t think any less of them. I’m a writer not a beauty queen. Looking good is not part of my job description. It doesn’t matter.

I really need to either stop caring or stop looking. Unfortunately right now what I want is to stop going out. There’s a part of me that thinks that I’d be happier if people couldn’t see me.

Maybe I don’t care how I look? Maybe I only care that other people care?

Yet more rejection.

I got the form rejection email today from the last agent I queried.

Once again I find myself asking if I’m mad to even try to find an agent. Even if the novel is as good as I think it is that doesn’t make it sellable. If no-one knows how to market it no-one is going to want to publish it. If no-one is going to want to publish it why would an agent want to represent it?

I am so bad at dealing with rejection and I’m not going to get better at it. As I said previously this is just the way I’m made. I’d give up on the dream of publishing if I could think of anything else to do but I just don’t have any other saleable skills. Writing is starting to look like just another one of my non-saleable skills.

It doesn’t matter how good you are at something. If no-one wants to pay you to do it then it’s not a sustainable life choice. I can’t afford for writing to be just another one of my hobbies and I can’t stand putting all that work into something that no-one will see.  I don’t want to die knowing that all I did with my life was to occupy the time between cradle and grave.