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.
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?
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.
I’ve been on the diet for several days now and it’s been interesting. I’ve been using Myfitnesspal to track my food intake. Since I’m on a low carb diet I’ve mainly been paying attention to carbs but the app also tracks my calorie intake (although it’s actually tracking Kilojoules because I set it up wrong) and I’ve been well under every day.
The problem with the induction phase of a low carb diet is that it does tend to make you grumpy. And by grumpy I mean likely to fly into a murderous rage with very little warning. It also takes a while to get into the habit of it. You spend a lot of time staring into the fridge wondering what you can eat and then end up just nibbling on cheese.
I still don’t have functioning scales but my Mother-in-law has offered to give me a new set for my birthday. That means I’ll be able to tell how much weight I’m not losing. I jest. I probably will lose some weight. It’s just depressing to know that it will never be enough.
And that’s the real reason that I’m so pissed off about going on this diet. No matter how hard I try, no matter how much weight I lose I already know that it’s not going to be enough. The Lipoedema means that while I might get thinner I’ll never be thin enough for society. The hangover from my youthful dalliance with anorexia means that I’ll never be satisfied with what I see in the mirror. The additional weight from the Lipoedema fat cells and all the fluid they trap means that there’s no point even asking about knee replacement surgery. It’s highly unlikely that my weight loss will do anything to fix any of my underlying problems.
This diet is just me torturing myself in the hope that if I can stand the torture long enough my doctor might take me seriously.
link to Diet Update 1
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.
The best evidence I’ve seen for the simulation hypothesis is that my life only makes sense if I exist for the amusement of some cruel and distant intelligence.
I had a doctor’s appointment this week in an effort to get something done about my lipoedema. This is a disorder that affects 11% of women and post pubescent girls. It means that my body lays down dysfunctional fat cells in my legs and upper arms (and possibly bum, hips and lower abdomen). These fat cells are unaffected by diet. They can’t be shifted by anything short of surgery. The fat cells also trap fluid leading to secondary lymphoedema which makes my legs even more swollen. There’s no cure but the progression can be slowed by compression garments and partially reversed by liposuction.
It’s usually triggered by hormonal changes. In my case it started at puberty and got much worse after childbirth. That means that it’s been undiagnosed and untreated for more than 30 years. For all that time I’ve been blaming myself for a weight problem that was in large part outside my control. According to the NHS website calorie restriction is not a treatment for lipoedema (according to most experts it’s not even a good treatment for obesity).
You’d think it would be simple. Get a diagnosis, get referred to a specialist, get fitted for compression garments and get on the waiting list for surgery?
Ha. You must be new here. I can’t get an official diagnosis because there are no specialists in Fife or Lothian. There may be no experts in Scotland. I can’t get fitted for compression garments because the off the peg ones don’t come in large enough sizes and the nurse says the doctor needs to measure me for the made to measure ones and the doctor says she doesn’t do that and I probably shouldn’t get them without first getting a Doppler test to prove my circulation is good enough but the Doppler sleeves won’t fit over my legs.
Did you get all that? I can’t get treatment for the condition that causes hugely distended limbs because my limbs are too distended.
And I can’t get surgery because it’s not available on the NHS because liposuction is a cosmetic procedure.
So my only option is going back to calorie restriction and hoping that there’s enough healthy fat in my legs that removing it will somehow make a difference. So I’m going back to a treatment that has a 95% failure rate for the thing it’s actually supposed to treat and doesn’t work at all on the problem I want treated. And it’s only taken 4 doctor appointments and 2 nurse appointments to find this out.
I suppose if I lose enough weight that my face, hands and feet become noticeably emaciated then maybe I’ll be able to get a doctor to take the problem seriously. Maybe I’ll be able to starve myself into organ failure while still being clinically obese. I might even get mentioned in the medical literature. Fame at last.
I don’t have a problem with the Body Positivity movement as long as it’s your body we’re talking about. You look fabulous, by the way.
I just can’t be positive about my body because there’s nothing positive about it. My problem is not that I’m fat. Fat is not a problem. My problem is that my body is a worthless piece of toxic trash that has been torturing me almost from birth.
I hate my body. Everything I’ve achieved I have achieved in spite of it. All it does is slow me down. I can’t rely on it. It turns the food I eat into dysfunctional fat cells that lock the energy away. I can’t access that energy and the cells just build up on my legs looking fucking hideous, hurting and stopping my joints from working.
I’m trapped in this fucking cage. It doesn’t work. I can’t fix it. It’s made my life a living hell. There’s nothing I could ever have done to fix it. I’ve been struggling my whole life, blaming myself, thinking that I was a failure and the whole time it’s been beyond my control. I was doomed from the start.
If there was any justice in the world I’d be offered a do-over of some kind. But there isn’t so I’m just stuck here until this body stops working completely. I feel like my entire life has been wasted. Not just because this body sucks but because I’ve wasted so much time blaming myself for something that was outside my control and trying to fix something that was never going to work.
No more. Fuck this body. I’m done putting up with its bullshit.
Well I say that… but even as I type this it’s making a spirited attempt to get me to stop. My back is cramping up. The pain is all I can think about. My body is demanding that I stop typing and go back to bed or something. Realistically there isn’t much I can do about it.
At the last election I was faced with the realisation that the electorate of the United Kingdom either actively wants me dead or at least doesn’t care if I die. It was a sobering realisation.
This time it is, if anything, worse. Because now it’s not just the United Kingdom. Many of my fellow Scots want me dead. Why?
Seriously, Scottish Conservative voters, why do you want me and people like me dead? You’ve voted for a party that has cut disability benefits, attacked the NHS, cut Social Care spending and refused to condemn the forced institutionalisation of disabled people. People are dying. People have died. And if, as seems likely, the Tories cling on to power then more people will die.
If you voted Conservative in this election then you voted in favour of turfing out law abiding EU citizens, you voted in favour of the rape clause, you voted in favour of taking mobility cars from disabled people, cutting benefits to the mentally ill and to people with learning difficulties. You voted in favour of benefit sanctions that drive vulnerable people to food banks where they can hang out with nurses and police officers. You voted against the NHS. You voted in favour of fox hunting and selling ivory and cosying up to Donald Fucking Trump.
If you voted Conservative then why? What was it that you thought you were voting for?
Of course if it’s Scottish Conservative MPs that return the Conservative party to power against the will of the English electorate I am going to laugh for about a week. Particularly since the EVEL legislation, pushed through by the Conservatives in the wake of the independence referendum, means that they wont be able to vote on a lot of bills.
Ha Ha. LOL. Nope.
Things can always get worse. That’s one of my mottos. As long as the human race has access to a planet with breathable air then there’s always room for things to get worse. However my personal life has now reached the point where worse doesn’t mean very much.
We had a visit from a couple of Sheriff’s Officers (the Scottish version of bailiffs). They came to inform us of a truly massive debt that we apparently owe to the local council from where we used to live. It was terrifying for about 20 minutes. The stress caused my husband to have the first full NEAD (Non-Epileptic Attack Disorder) seizure in years. We contacted the Citizen’s Advice Bureau.
Then we found out that we are so poor that they can’t do much to us. We have too little money for them to freeze our bank accounts. We don’t have earnings for them to arrest. We don’t have property to seize. At worse it’s going to mean that our other debts will take longer to repay as it’s a priority debt and thus gets the biggest slice of our financial cake.
The debts will all get paid eventually and that hasn’t changed. My credit rating will be in the toilet until they do and that hasn’t changed. All that’s changed is how long that will take. It’s now slightly less likely that I’ll live long enough to see that fateful day but I wasn’t really expecting to anyway.
I have another motto: Always look on the bright side. If you can’t find the bright side then polish the dark side until it shines.
Just think, if we owned a house or a car or had savings or jobs then this would be terrible news. It would be devastating. But our lives are already in the toilet so it’s just one more thing. This is how you polish the dark side.
A few days ago I wrote about my feelings of guilt at not working hard enough towards my writing goals. I wrote about how I’d been playing a lot of World of Tanks rather than writing. I said it was fun but it wasn’t taking me anywhere. Turns out I was wrong. It was taking me in the direction of pain.
One of the problems caused by Fibromyalgia is muscle spasms. Sometimes they come on without an obvious cause but they can be triggered by any repetitive activity or maintaining a the same position too long. Apparently when I play World of Tanks I grip the controller too tightly with my right hand (I use the right stick to aim and the right trigger to fire).
As a result my right arm is now, to use a highly technical medical term, fucked. I can’t feel my fingers, my hand is tingling, my forearm feels like it’s on fire and my bicep feels like I’ve been arm wrestling Thor. My typing speed is a quarter what it usually is and I need help to brush my hair and put a bra on.
It’s so bad I’ve had to break out the painkillers. Let me put that statement into perspective. I have a chronic pain condition. That means I’m always in pain. There’s no point medicating the pain all the time because I have to rely on synthetic opioid painkillers and the more you use them the less effective they are. My aim in using them isn’t to kill the pain but to reduce it to a level that isn’t a constant distraction. Thus I don’t bother with pain medication at all unless the pain is consistently worse than standing on a Lego brick.
To summarize: I’m too sore to write, too high to do chores and I can’t distract myself with video games because that would only make the problem worse. I would really like it if my life could stop sucking for a bit.