Tag: chronic pain

Belated Farewell to 2022

Bones

Well the years start coming and they don’t stop coming, as Smashmouth said so many years ago, and it is painfully true. The hits also keep coming, but we roll with them, because the alternative is to break, and ain’t nobody got time for that.

This year has been its usual mix of ups and downs – I got through this year of university with my service dog at my side, my wrist has healed, and I can do things. I still have to do a lot of things off-handed, but I can still do them, and that’s what counts! I’ve realised some things about myself and my amazing human being that have settled much anxiety on my part, and are pushing me towards a new and exciting

Well the years start coming and they don’t stop coming, as Smashmouth said so many years ago, and it is painfully true. The hits also keep coming, but we roll with them, because the alternative is to break, and ain’t nobody got time for that.

This year has been its usual mix of ups and downs – I got through this year of university with my service dog at my side, my wrist has healed, and I can do things. I still have to do a lot of things off-handed, but I can still do them, and that’s what counts! I’ve realised some things about myself and my amazing human being that have settled much anxiety on my part, and are pushing me towards a new and exciting future.

Amazingly, and I’m going to do a full write up of this, I have found some medications that have considerably helped with improving my energy levels, physical resilience, and recovery times. With that, careful exercise, and a collapsible mobility scooter (seriously if you don’t have one you should absolutely get one), I have had more energy to put into things I love doing.

This next year is going to be a slog, one more year of intense university to go, but then I am free to decide on the future I want.

Farewell to 2021

Bones

I won’t look back on 2021 with fondness, and I won’t sugarcoat it by highlighting the few silver linings. I will mention them, but I will not say “they make the bad things worth it” because, to be honest, they don’t.

2021 sucked. It was hard, it was painful, it was stressful and expensive. I was diagnosed with postural hypotension, and discovered that I would convulse if the almost-fainting episode was severe enough (I suspect this is convulsive syncope, but there’s no real way to diagnose it, unless I have an observed episode). I was dismissed by doctors for both that and my munted wrist.

My narcissistic ex-husband finally sorted out paying me (and my mother) for his debt / things he borrowed, and while that was great, the nightmares I experienced during this were something else. At least now I can file for divorce.

I gained and spent a small fortune. I’m still kicking myself for spending that much. I have so many regrets about that it physically pains me to think about it. I still don’t know how.

Because of my ruptured triangular fibrocartilage complex, I was unable to attend university last year. I was also unable to work. Unable to knit, crochet, write. I became very depressed, which resulted in me becoming one with the couch for the majority of the year. I gained another 8kg.

I had surgery for my ruptured triangular fibrocartilage complex at the start of November. They found a lot more damage than they expected. They repaired a ligament connecting the medial and proximal carpal bones in my right wrist, admired the joint capsule I had busted up, and took a redundant ligament from my inner wrist to become my new ECU sheath. Since late December I have been permitted to begin moving my wrist, though it remains sore and stiff. The scar tissue adheres to the underlying tissue so quickly, I must keep massaging the extensive scarring to break down those bonds.

There were bright spots in 2021. I got away to the beach for a bit with the dogs. I have increased my energy levels considerably. I’ve worked hard to gain more fitness and strength. I have made it to the end of 2021 with the same number of animals as I went in.

I will work hard to make sure 2022 is a better year than the last one.

Remember To Take Your Meds

Bones

I have a really good pill taking routine. I’ve been taking the same pills for years now: one lot in the morning, one lot in the evening. I take them at specific times, and I even have specific alarms on my phone to remind me. My amazing human even reminds me to take my meds each evening. It’s a good routine. It works.

Except when it doesn’t!

I took in a foster kitten, so my evening routine changed slightly to accommodate kitten cuddle time. This put everything out of whack and, as a result, I forgot to take my evening Pregabalin.

Don’t do it, folks, it’s not worth it. Remember to take your meds.

I woke up hot and feverish, sweat dripping down my back and joints burning. My feet felt so swollen they could burst and every step was agony. I hobbled into the kitchen, took my meds, poured myself a cup of kava, then curled up on the couch and went back to sleep.

I’ll talk more about kava in a later post, but suffice to say it’s been a godsend, especially for days where I stupidly forget my meds.

I slept all morning and by early afternoon everything had kicked in and more or less righted itself. I still couldn’t quite manage normal life, but I wasn’t in quite as much pain.

So yeah. Remember to take your meds!

Fibromyalgia and Insomnia

Bones

For the last … I don’t know how many weeks, to be honest, I have had insomnia. This is unusual for me – I’m a good sleeper, I have good sleep hygiene around bedtime, and I usually sleep through the night.

Lately I’ve been waking up between 1am and 3am, unable to return to sleep. I lie in bed where every point of contact aches, from my head resting on the pillow to my heels against the mattress. So I get up, I make myself some kava, and I try to get back to sleep on the couch. Most days I succeed. Some days I don’t.

It’s tiring, and what’s worse is it simply increases the pain I experience. Less rest results in more pain results in less rest results in more pain … you see where I’m going here. It’s a vicious cycle of craptastic proportions.

I know fibromyalgia is a condition that can affect sleep. It disrupts brain waves, particularly during slow wave sleep, which is the deepest sleep. Due to this, fibromyalgia patients will often feel unrested, despite having a full night of sleep.

On one hand, I absolutely experience that. I use a sleep tracker and an apple watch to monitor my sleep patterns and heart rate, and I can confirm that I slam straight down into deep sleep for about an hour, and then dive up and down like a yoyo until I eventually wake up, whether that’s at 1am or 7am.

I take kava in small doses to help with my fibromyalgia pain, and in slightly larger doses at night to help me rest. I’ve also been taking 4mg of melatonin, a supplement I am just about to run a trial without. In theory I should be getting some pretty decent sleep. Like I said before, I have good sleep hygiene around bedtime, I make sure I go to bed early so there’s more time for me to relax and fall asleep naturally, I remove screens, and I have conditioned myself to fall asleep to specific podcasts.

But it’s not the falling asleep that’s the problem, it’s the staying asleep.

I suspect a lot of it is down to my levels of pain, which sort of makes sense but at the same time doesn’t, as fibromyalgia pain typically does not and has not interfered with my sleep historically. I seem to recall reading somewhere that fibromyalgia pain technically ceases during sleep. So it is likely that it is something else waking me and keeping me awake, and the pain is just there.

I’ve booked another appointment with my doctor for next week, and if I’m still struggling with my sleep then, I’ll ask him to sort me out something, or send me off for sleep research.

Still, it’s a puzzle, and it’s frustrating. I’m constantly tired but wired, having to take naps during the day to get through. I avoid having naps in the afternoons now just to try and help me get to sleep, but if I don’t get a nap in the morning I really struggle to get through the day. And it’s not the naps, as I’ve been known to have a 3 hour nap in the morning, another in the afternoon, and then sleep solidly from 9pm to 7am the next morning for months on end.

Blegh. Has anyone else experienced similar insomnia with fibromyalgia? Did you ever get answers? I’d love to hear from you.

Unbecoming Is Hard

Bones

I have been peeling myself apart, slowly but surely, piece by piece. I take each piece and examine it, because without understanding your habits, you cannot change them. Without understanding your motivations, your fears, your protective measures, you cannot truly discard them.

It’s difficult and painful and terrifying. It’s powerful and ugly and messy and freeing.

I’ve been doing this work with the Enneagram, which is another one of those ‘personality typing’ things. In this case, it types your personality, points out your primary fear, your primary goal, how you go about it, and how you typically behave when you are wrapped up in your ego – that part of your brain that is linked with your personality and reality testing.

But more than that, it identifies ways to develop, how to let go of your ego, of your fixation with your personality. Because you are not your personality. You are you, your personality is what you have constructed between yourself and the world. It is usually based around a childhood hurt – in my instance, a lack of stability – and how you respond to it and grow your walls around that.

I’m doing this by slowly reading my way through The Wisdom of the Enneagram by Don Richard Riso. I’m doing it slowly for a number of reasons. Firstly, I can only handle so much spirituality talk in one day – I wasn’t raised in a spiritual household and the style and content can be quite difficult for me to take on board. Secondly, I can only handle so many jarring insights into my psyche in one day! There have been moments of physical shock upon reading certain sentences. Even when I don’t get mentally electrocuted, it is disquieting to pick yourself apart and to bring a mirror up to the ugliest parts of you.

It’s what you have to do, though. You need to know yourself, the good and the bad, so you can work on improving yourself and how you interact with the world. I have the time, I have half of the motivation, and the other half is just sheer bloodyminded stubbornness. I pause regularly and let things settle in myself before moving on to the next bit, although I strongly suspect I will be reading over the whole book again. I’m not even up to the bit where they discuss the individual personality types in detail, I’m still reading the explanation on how the Enneagram system works!

Some days I cannot imagine that I will be able to develop past this road block of chronic illness. It has consumed me these last two years – new things have cropped up every few months to drag me back down. It feels like I claw myself back up only to be king hit as soon as I’ve got my feet under me, and I haven’t really been able to process anything that’s happened to me. I’ve just responded and gotten on with it. Processing these health traumas and actually sitting with that feeling is … terrifying. It’s why I have so many coping mechanisms around distracting myself. It’s also probably partly why I sleep so much – can’t process anything if you’re asleep! But running away won’t get me to where I want to be.

So I am slowly but surely dismantling myself and examining each piece of me. It is hard work, and some days I cannot bring myself to do it, but it is worth it in the end.