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?
One of the problems with chronic pain is that it’s a lot harder to treat than acute pain. With acute pain you can just knock it back with strong painkillers and then wean yourself off the painkillers. Acute pain also has a limited duration so there’s the option of putting up with it till it goes away.
Chronic pain isn’t going anywhere and over time the painkillers tend to become less effective. My pain is variable so I deal with it by only medicating it when it gets particularly bad and ignoring it the rest of the time. This is not ideal.
For the last week I’ve been experimenting with CBD. That’s cannabidiol which is a non-psychoactive component of marijuana. That means it doesn’t make you high. There’s some evidence that it can be used to treat anxiety, inflammation and pain. Sadly it’s the THC in cannabis that works really well against pain but that’s the stuff that makes you high and you can’t buy that legally in the UK.
I’ve been vaping CBD oil as it’s the fastest way to get it into the system. I’ve been using it to deal with those times when the pain suddenly gets bad. Oral painkillers can take up to 40 minutes to take effect so something quicker would be handy. I’ve also been using it when I’m feeling anxious as anxiety can make Fibromyalgia worse.
It seems to be working. It’s been helpful when joint pain hits while I’m out and about. It’s too early to be sure but I’ll keep you updated.
For now I’m using a disposable vape pen in blackcurrant menthol flavour. I was dubious about that as a flavour combination but it’s surprisingly nice. I will probably move to a refillable one now that I think it’s worth the money. If anyone else wants to try the same supplier I’m using I have a referral link. If you use it and you buy stuff I get a discount. Here’s the link – https://cbdlifeuk.com/?raf=ref1943134.
There have been some proper trials done on CBD that showed a positive effect. However only a couple have been large scale double blind trials. Most of the studies have been of quite poor quality. So I would suggest that if you are going to try it you take it slow, don’t spend loads of money on something that might not work for you.
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.
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.
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.
A friend recently posted this link, in which Alan Moore advises new writers to self publish, on Facebook and it set me thinking. It mainly set me thinking about a talk on professional self publishing that I attended at XpoNorth.
On the one hand I hear Alan Moor, respected author, wizard and wild man, telling me that self-publishing is the future because publishers suck*. On the other hand I hear Ben Galley, respected author and self-publishing consultant telling me that in order to self-publish professionaly I need to hire people to edit, and design, and do cover art, and typeset/layout the book and that it will “only” cost about £1,500.
If you are a young writer reading this and you are still in education and you have any hopes of some day making a living from your writing then I suggest that you make a list of skills to learn as soon as possible. I suggest that this list should include touch typing, typesetting, book design, web design and spreadsheets. You’ll need to learn how to do your own website and you’ll need spreadsheets so you can track sales etc. If you have any artistic talent at all then learning how to do your own cover art would probably be good. Having these skills will save you a lot of money but you’ll still have to spend hundreds on an editor or two because you can’t properly edit your own work.
None of which helps me. My problem is one of lack. I lack the money, the time the skills and the spoons to self publish professionally. Writing takes so much out of me that if I’m writing I can’t also be learning any of these skills. I can’t afford to buy in the skills and I’m certainty not going to try to persuade someone to do it
for free for exposure. I could barter with the skills I do have but if anyone else valued those I’d have enough money to pay.
I suppose this is all just a long winded way of saying that no matter how good I am at writing I’m not very good at being an author. I should be self-reliant and practical. I should be managing my writing like a business. This is just one more failure in a lifetime of failure. Once more I am forced to admit that my best is just not good enough.
*Please note that I am not saying that publishers suck. That is the opinion of Alan Moore. I am merely reporting his opinion.
So the “getting used to rejection project” which started back in May has finally come to fruition. The agent got back to me. He wanted my novel for a particular publisher that, as of two weeks ago, decided they were only looking for straight crime series novels and romance. He’s working full time for the publisher and can’t spare the time to represent me.
I have to say I am surprised by my own reaction. I’m really not particularly upset about it. I’m a little upset about having to write more fucking query letters. I’m a little upset about having to tell people who were rooting for me. I’m really not looking forward to telling my Mother because she will surely launch into another conspiracy theory about how he was only after my manuscript to steal my novel.
In a bizarre turn I’m slightly pissed off to have got the bad news so quickly. Could he not have waited for me to finish tidying the house? Now I have to use my precious spoons to chase up agents and write query letters rather than clean the house.
Well I say I’m not particularly upset but I went out this afternoon and bought (amongst other things) loads of ice cream and crisps and then came back and had to lie down for two hours but that’s probably unrelated.
The other day I was regaling you will tails of my epic laundry fail. It turned out that failure was not done with me that day.
You see I had more chores to do. I had to leave the house and get on a bus and go to actual shops to buy things because I was out of deodorant and we were getting low on chocolate and cheese and that’s an emergency in my house. The chocolate and cheese is an emergency, the deodorant not so much. However it turned out that I had made a horrible miscalculation.
I knew when I was cleaning the kitchen and doing the laundry that I had to save some spoons for going out (if you’re confused by the spoon reference please see this explanation of spoon theory). I thought I was being careful: I cut corners on the cleaning, I didn’t go looking for additional laundry, and I had a sit down and a decaff before leaving the house. It was all for naught because by the time I got off the bus on the way home I was moving in slow motion. When I actually got home my body was sending my brain so many error messages that I couldn’t speak properly. In short I was in negative spoons.
Being in negative spoons is no joke. Your body wont co-operate, your brain isn’t working properly and everything either hurts or is numb. And it doesn’t stop there. There’s a hangover from negative spoons. Those additional spoons I used that I didn’t actually have had to come from somewhere. They came from the future. When you’re in a spoon deficit it means that you’ve borrowed spoons from tomorrow and they must be re-payed with interest. But when you’re borrowing the spoons you don’t know how much interest you’ll be paying back or for how long. I could be paying back those spoons for days. And wearing pink while I do it.