Gentle readers I beg your patience while I rant for a bit. The last few days have not gone well and the next few aren’t looking great either.
I’m having a major Fibromyalgia flare up. For the last three days I’ve had a muscle spasm in my back so bad that the pain has gone through excruciating and into exquisite. I’m taking Tramadol, Paracetamol and vaping CBD and I still can’t bend without screaming. There is no comfortable way for me to sit, stand or lie. Part of the spasm is over my left kidney and if I started pissing blood it would be a relief because a kidney infection can be treated, kidney stones pass, even kidney failure can be managed.
Fortunately that’s distracting me from the sudden appearance of a hole in one of my back teeth. I think a filling might have fallen out. Or maybe a bit of the tooth has cracked off. I already had a dental appointment this week so that’s lucky. I’m trying really hard to believe that it’s lucky but it’s hard to think straight over the screaming pain from my back.
I’m still not back on my usual eating plan because of difficulty getting the shopping sorted. Between trouble with deliveries and the problem with my back and my spouse’s anxiety being too bad to do the shopping for me I’m having difficulty sorting out a coherent meal plan.
I’m having trouble getting anything done. I started this weekend with a book I’m wanted to read, a film I wanted to watch on Netflix, a film I’m trying to see in the cinema before it leaves a podcast I’m trying to catch up with and a novel that I’m trying to finish writing. In all I managed 15 pages of the book, neither of the films, 3 episodes of the podcast and about 2,000 re-written words of my novel. That’s pathetic.
And the worst of it is this feeling that my life is slipping away from me. Time is passing and I’m not doing anything with it. Precious seconds of my life are ticking by and I am variously paralyzed by pain, or depression, or indecision, or just lack of basic organisational skills.
Notebooks, and journals, and organisers.
There’s something so hopeful about ordering a new planner or diary. Particularly if it comes with some sort of promise to sort out your life and help you to ‘get things done’. When the thing arrives there’s all that lovely busy work involved in filling in details and making plans and committing to goals. It all feels so very productive.
And none of it fucking works.
At least none of it works reliably for me personally. Your mileage may vary. Possibly you, dear reader, are not disorganised trash like me.
Putting all my appointments in a Google calendar that is synced to my phone calendar mostly works. It’s at least 90% successful as long as I remember to put the thing on the calendar and set an alarm for a couple of days before. But it only works for appointments.
As a person with ADHD, depression and fibromyalgia I need to be organised. I need to plan ahead. As a person with terrible executive function problems I am shitty at planning ahead. It’s not unusual for me to get up at the crack of 2pm and spend half an hour setting goals and making lists of the stuff I need to work on to achieve those goals and then immediately go and do something else instead.
I am so bad at following through that I could make a todo list that includes reading a book that I’m supposed to be reviewing, catching up with the Unbeatable Squirrel Girl comic and eating some chocolate and it would lead to me scrubbing the kitchen sink.
It’s starting to feel like I only ever achieve things by accident. I’m pretty sure that my 9+ first drafts and my one completed novel only exist because I was supposed to be tidying the house. I’m wrapped in a crochet shawl that only exists because I was supposed to be editing. I’m blogging because I just decided to crochet a hat. Earlier today I cleaned the hob rather than blog.
And it wouldn’t be so bad if I was doing any of these things properly. But i’m not. My books aren’t published, my blog is kind of bland, my kitchen is still a mess and my crochet mainly results in me spending too much money on yarn. But I recently backed a kickstarter for a really nice planner and this one has a SYSTEM. Surely this is the one that will finally work.
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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.
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.
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.
I’ve written before about having chronic pain. Today I want to talk about the uncertainty of chronic pain because that’s the bit that you don’t usually hear about.
Everybody knows that chronic pain sucks. Even if you’ve never experienced it you know that pain is bad and that having it around all the time must be really bad. But a phrase like “chronic pain” also sort of suggests that the pain is not only constantly present but of constant intensity and location and, sadly, that is not how things are. At least not for me.
I’m now 3 days into a major pain flair up in my left leg. It might be the Fibromyalgia or it might be Osteoarthritis. I’ve got no way of knowing and it’s not like there’s a treatment for either of them. But there is a difference. If it’s Fibromyalgia then the pain will probably reduce or move at some point. If it’s Osteoarthritis then it’s not going anywhere. Ever.
If it’s Osteoarthritis then it’s just the new reality of my life. That would really suck because this is bad. This is extreme pain even by my standards and I have a list of the things I’ve been through that hurt worse than childbirth. This one has the potential to confine me to the house. This is me too sore to load the dishwasher or stand at the cooker even long enough to make an omelette. About the only thing going for it is that it’s not going to stop me from writing.
But maybe it’s not Osteoarthritis? Maybe it’s just the Fibromyalgia? Maybe I’ll wake up tomorrow, or the next day, or the day after that and it will have faded or shifted and I’ll be able to do my chores again. That’s the uncertainty. I never know until I move which parts of me are going to hurt. When they start hurting I don’t know how long they’re going to hurt for. When they’re working fine I don’t know how long that’s going to be for either.
I’m also dealing with a deep sense of betrayal. Because it’s usually the other leg that pulls this shit. Dammit, Leftie, I thought I could trust you. I thought I could rely on you.