My annual Spoonie scald

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.

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My pain experiment.

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.

A head full of cotton wool

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.

Uncertainty

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.