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.
This week I lost half a kilo (just over a pound).
Probably. It might have been more but I forgot to weigh myself first thing becuase I had to get up first thing and shout at the bank and then go out and get money and then eat something. Then come back home and weigh myself. Then move the scales because the corner was slightly cocked on the mat and it was claiming that I’d lost 3 kilos,
Also I’m menstruating* which might mess it up. So really this week’s weight should be a line of question marks.
Lessons from this week include that I can eat at Wagamama while keeping it low carb and that Costa’s new breakfast bars are low carb enough for me to eat as long as I’m careful for the rest of the day.
I’m trying to be more active but Goddammit it hurts. As I write this I have a muscle spasm in my right forearm that is constantly reminding me that my life sucks and it will never be easy. Typing with an arm spasm is no fun at all but if I expected life to be fun I probably should have been born in an entirely different body.
*Anyone who is shocked that I, an adult woman, have publicly mentioned the fact that my uterus is bleeding probably needs to back away from their device. You would not believe the stuff that’s on the internet.
Last update. 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
Keeping you all up to date on the things that I’m doing.
I’m continuing to experiment with vaping CBD oil for pain management. I’ve had two problems. The disposable vape pen I was using started to leak and I’ve had a major pain flare up.
Fortunately CBDlife* dealt with my complaint in a speedy fashion. I was going to buy a reusable vape pen anyway and they offered me a free oil cartridge as a replacement for the leaking pen and delivered the order the next day.
The pain flare up is a semi-regular thing where I get a muscle spasm in my upper back or neck that spreads to my arm (usually the left one). It’s horrifically painful and requires several days of painkillers, exercise and not using my arm for anything other than the special exercises. The CBD oil does seem to be helping with the pain so that’s something.
I’ve been working on one of the sequels to the novel I’ve been querying. I’ve now finished draft 1.5 and I’m going back and writing the extra scenes that I’ve realised I need. I reckon I have maybe 20,000 words of extra scenes plus one entirely new character that needs to be added.
My friend,Vanessa Robertson, has persuaded me to enter the pitch perfect competition at Bloody Scotland. I’ve been working on a 100 word pitch for the ‘finished’** novel. There’s a part of me that thinks it’s a bad idea because I can’t stick to a single genre and Bloody Scotland is for crime writing. She pointed out that I have nothing to lose and that my novel does have crime in it.
Querying has stalled because most agents are on holiday. However I do have my sights on two agents that I intend to query in the autumn. Both are as a result of personal recommendations.
I also recently got some idea of how steep the mountain ahead of me is. Vanessa was recently offered representation by an agent and she told me what the numbers are like. In a single year her agent will receive thousands but take on only a handful of new clients.
Can someone remind me why I ever thought writing was a good idea?
*If you use that link to buy stuff I will get a percentage back as store credit.
**I’ve decided to start calling the novel ‘finished’ because it can’t really be finished until it’s ready to be published. It’s currently as finished as I can get it without help from someone who knows more about editing than me.
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.
This post is just to let you all know what kinds of things to expect in the coming weeks. Unfortunate I am currently deep in negative spoons so this might be gibberish. Good luck making sense of it.
I’m going to start a series of posts offering advice to young creatives. The posts are mainly aimed at aspiring writers but I will try to make them useful to people pursuing other arts.
There are more Guardians of the Galaxy Volume 2 posts coming. Sorry but I am not nearly done with talking about that film. It’s just too good. How dare it be so good.
I also intend to write some stuff about Doctor Who. Because I love Doctor Who, that’s why. It’s my blog and I will blog what I want to. Even exceptionally geeky head canons about peculiarly British scifi.
I will almost certainly continue to whine about how hard it is to get published. Eventually I might try to crowd fund self publishing since I can’t afford to professionally self publish properly.
Also if the Conservative party wins the forthcoming General Election in the UK then you can expect more salt that the dead sea from me. There will be language so foul that if you read my blog while drinking milk it will instantly turn sour.
I also have an idea for some stuff I want to write on modern witchcraft. Not airy fairy new agey kind of witchcraft and not the ‘I don’t actually know the difference between witchcraft and satanism’ stuff either.
I may even get my finger out and finally write some steampunk psychiatry stuff.
Anyway. If any of that seems interesting or intriguing to you then leave a comment. Preferably on the actual blog rather than via twitter or Facebook or Tumblr. If you comment on the blog then other people who read the blog will see it. If you comment via social media the only person guaranteed to see it is me. Which is great for me but less likely to start a conversation.
Last year I was diagnosed with lymphoedema. At the time it just seemed like yet another thing wrong with me. I almost asked the Doctor why he bothered telling me since it’s just another thing that I can’t fix. I did some research and found that it was either genetic or caused by being fat and while I was suspicious that it might be genetic it seemed more likely that it was caused by being fat. So not only did I have a new thing wrong with me that I couldn’t fix but it was probably my fault.
Today I found out that my research was wrong. My lymphoedema would appear to be caused by Lipoedema. It makes sense of a lot of things. It explains the leg pains I’ve had for years, the way my legs were huge but my feet didn’t have any fat on them, and especially the time I lost more than 8 stone (119 lbs or 54 kg to be exact) and saw little change in my legs – my body was 8 dress sizes smaller than my legs.
Now I was only able to lose 8 stone because I did get really fat. But not until after I tried anorexia for a while. I had fat legs when I was anorexic too. I don’t mean imaginary fat legs. I mean the last day I was actively anorexic I was 13 years old and I was wearing a t-shirt sized for a 11-year-old girl and size 10 women’s trousers which only just fitted over my knees and thighs but fell off without a belt.
When I stopped restricting my food intake my disordered eating snapped back in the other direction and I took up binge eating. Which didn’t help my legs or my already fragile self esteem. Every time I tried to change my eating habits I found that I couldn’t keep it up. The anorexia had left me unable to see any positive change in the mirror and the lipoedema meant that I wasn’t getting much positive feedback from my clothes.
I used to describe my teenaged self as fat and depressed. But maybe I was just an average girl with undiagnosed lipoedema and ADHD. I spent my childhood and teen years feeling stupid and worthless and deformed and it’s cast a long shadow over the rest of my life. What would I have been like if we’d known what was wrong?
The thought of it makes me feel queasy. I can’t think properly because of the unfamiliar sound of some part of my mind repeating “It wasn’t your fault. None of it was your fault.” It feels weird. I tend to assume that everything is my fault.
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.
One of the most frustrating things about my combination of mental and physical disorders is that sometimes my brain just can’t. I know I’m not thinking clearly and I hate it. I don’t know exactly what causes it. I don’t know how to avoid it. I don’t know how to make it better when it happens.
It’s like someone packed my brain in cotton wool or bubble wrap. Some people with Fibromyalgia call it fibro fog but to me it feels denser than fog. I also don’t like assuming that it’s caused by the Fibromyalgia. I suspect that it’s more likely to be caused by depression or anxiety or information overload from pain or perhaps some horrible combination. Of course it could just be Executive Function Disorder in disguise.
I have a bad case of it at the moment. It’s affecting everything but it gets worse whenever I think about querying. I know that there are steps that people do. I assume that step one involves working out which agents to query but I can’t remember how I did that before and I can’t work out how to do it now. The more I try to drag my mind back to that task the harder it becomes to get it to do anything at all.
I’m hungry as I write this and soon it will be a meal time but I have no idea what to do about it. There’s a meeting that I should be going to tonight but there’s no chance of me going anywhere. There are definitely chores that need doing but I can’t remember what they are or how to do them.
I’m not entirely convinced that this post makes sense. I’m going to schedule this several days into the future in the hope that before it goes out I’ll be together enough to edit it. Of course I could forget all about it. So if you’re reading this and it’s full of typos and homophones and sentence fragments then I’m probably still too foggy to have checked it over.