Remember To Take Your Meds

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

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.

The Trouble With Routine and Fibromyalgia

I have tried, innumerable times over my life, to establish a routine within my life. To say that “on this day I do this and this, on that day I do that and that, and at this time I do this thing”.

It has never worked. I manage the routine for a week, maybe two, but then I inevitably crash and burn and the routine is gone and I go right back to feeling like this is one of my biggest failings, that the problem is all to do with me and how I approach the world.

It took a dear friend pointing out that I am not reliable because my health is not reliable for me to realise that maybe some of the blame isn’t on me, but rather on my illness. So I looked into it a bit more, experimented a bit (okay none of this is truly scientific, but it still worked for my purposes!), and came to the conclusion that while yes, some of my inability to maintain routine does come from my mentality, a lot more of it stems from my sometimes catastrophic flare ups during the initial part of establishing the routine.

I tried to establish a routine where, once I have had my breakfast, I use a daily mantra app to find a mantra that resonates me that day and write it down in my 2021 diary. It worked for almost 2 weeks until one morning I could barely keep my eyes open to finish my breakfast and slipped into a fatigue haze that lasted 5 days. It was such a simple little routine – manhandle the phone, pick up a pen, and write a pithy sentence in glittery ink – and yet once that fatigue hit, even thinking about picking up my diary and a pen was exhausting.

It is said that it takes 21 days to establish a routine, and a further 90 days to establish a lifestyle change. Well what happens if, on day 13, you become so fatigued you can barely browse Pinterest? What if you’re like this for three to four days before slowly climbing back out of a haze of fatigue, to come back to full functioning a week later? Well that routine you were trying to establish is gone, and with the failure, it feels pointless to re-attempt it. It’s even harder to gain the motivation to re-attempt the routine when all of your energy is put into recovering, and you cannot gather the spoons to spend on the willpower needed to begin again.

That’s routines and fibromyalgia. Because willpower costs energy, and when you’re low on energy, you’re also low on willpower. You’re also riding the low of failing, yet again, to establish a routine. This combines into a perfect storm of nope which, in my case at least, has effectively prevented me from getting any kind of routine past ‘get up, feed animals, feed and caffeinate self, go back to sleep on the couch’ in the mornings.

It’s going to take me a very long time before I can comfortably and reliably ‘give myself a break’ for not managing routines, for ‘falling off the bandwagon’ as it were (not with alcohol, fortunately, but definitely with sloth). It will likely take me even longer to figure out how to come back from that heavy fatigue and begin to re-establish the routine again.

Unbecoming Is Hard

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.

Restless Arm Syndrome

Some weeks ago, as I was lying on my couch and undertaking my age old stress management of eternal scrolling and listening to murder / accidents / plane crash investigations, when my left arm twitched. It crept up on me. What I can only describe as a burning anxiety set in to my shoulder and upper arm. It went away for a few brief seconds when I moved my arm or tensed the muscle, but otherwise it just sat there, fat and heavy, destroying all my attempts at relaxation.

At first it was only there when I was incredibly relaxed. I’d begin my relaxation routine, and it was only when I was well and truly relaxed, body pliable and muscles limp, that it would come.

Then it came as I was relaxing. Then it came whenever I just lay down and stopped for a few minutes.

It was at that point that I really started to notice it and pay attention and catalogue it. It felt like a bad case of anxiety energy – that one you get where you have burning need to do something, anything but you can’t make yourself do a damn thing, so it sits in your chest and tightens until you want to explode. My shoulder and upper arm muscles spasmed more frequently, and the only relief I got was from moving my arm. It didn’t matter what position it was in, once it stopped moving, the burning sensation came back. I tried to google “anxiety in my arm” which, understandably, didn’t produce many results. I kept digging and came across Restless Arm Syndrome. I’d only ever heard of Restless Leg Syndrome, which is a common enough comorbidity to Fibromyalgia.

Restless Arm Syndrome is typically where Restless Leg Syndrome progresses to. When it’s really bad, it can involve more areas of your body than just your legs. But I’ve never had this feeling in my legs before, and no other body part has ever been involved, so it couldn’t be that, and I really struggled to find any information on primary Restless Arm Syndrome.

Regardless I went to see my GP who advised that, fortunately, the treatment for Restless <Insert Limb Here> Syndrome was pregabalin. The pregabalin that I’d just finished weaning down from 300mg twice a day to 150mg twice a day. As soon as I’d increased my dose back up to 300mg twice a day, however, the arm stopped burning and twitching.

I think it may be creeping back in lately – there are a lot of unavoidable stressors in my life at the moment, which could be contributing to it – but it is still considerably better than it was. I’d love to be on less pregabalin, it makes me feel emotionally flat, but I really like not having anxiety arm!