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 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.
This week I lost half a kilo (about a pound) and I am already underwhelmed with weight loss after only 4 weigh-ins.
I find the entire process of dieting deeply unsatisfying. It’s expensive, it takes ages, it requires constant vigilance, and it leads to me obsessing about my appearance.
I’d really rather not think about my appearance. I’ve tried very hard to either like how I look or not care that I don’t like how I look. Dieting invariably seems to involve more thinking about how I can’t fix the problems with how I look and I’ve so far failed to fix how I feel about that.
Dieting also means not using food as a painkiller or an antidepressant. It means having to deal with pain, both physical and psychological, that I could avoid if I wasn’t on a fucking diet. And I have to expand precious mental resources working out what to eat rather than say, just having some toast. I find myself just having a cup of coffee to suppress my appetite because then I don’t have to think.
Context is everything. I’m a fat middle aged woman so me deciding to drink coffee rather than eat seems like a neat diet hack. But it’s just as dysfunctional as a skinny teenaged girl doing the same thing. It’s neither healthy nor moderate and it may not be sustainable but who cares because the number on the scale is headed in the right direction.
For more information see Update 4 or the Diet Page.
So the CBD oil that I’ve been talking about in previous posts here and here is definitely working.
My background levels of pain have greatly reduced and it’s now easier to deal with breakthrough pain. However my right knee has clearly decided to be a horrible bitch about things. It’s swollen and it’s grinding and it won’t reliably bend and it hurts whenever I do foolish things like stand up or sit down or roll over in bed.
And something else has decided to flare up. Something really painful. Something that I really need to see a doctor about but I was too late this morning to get an appointment and I have stuff to do tomorrow that can’t be moved and if I leave it till Friday to see the doctor then I will have reached my own personal defcon 10 of pain.
That’s not 10 out of 10 on the pain scale. That level of pain is just screaming until it stops. Defcon 10 is out of my mind with pain, distraction and frustration. It’s a result of having to just put up with a level and type and location of pain that no-one should have to put up with. Defcon 10 is dangerous because it makes me want to knife 40 people at random. Hopefully the CBD oil will help with this kind of pain.
If anyone is interested I will post links to the kind of vape pen, cartridges and oil I’m using.
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.
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.
I’m terrified of dying. I don’t just fear the pain associated with death I fear the very idea of it. If I had some genuine religious faith then perhaps I would fear it less but I can’t bring myself to believe that there’s an after-life waiting for me. Other people? Yes. Me? No.
Maybe it’s a good thing. My fear of death is probably the only thing that kept me going through my teen years. That fear kept me from serious thoughts of suicide until I was well into adulthood. By the times things had got bad enough that I hated the thought of living more than the thought of dying I couldn’t do anything about it because by then I had responsibilities.
These days I often wish I was dead but I’m not going to act on that wish because it would hurt too many people too much. For years I felt lonely and unloved and I was sure that no-one cared if I lived or died. I didn’t know when I was well off.
I’m fond of saying that you should always look on the bright side and if you can’t find it you should polish the dark side. The bright side of my fear of death was that it kept me alive in difficult times. If I polish the dark side of how bloody awful my life is right now then at least it’s cured my fear of death. Death comes to us all and when it comes for me it’s going to be a relief.
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.