Taking Responsibility For Your Chronic Illness

This is a delicate topic because we often equate responsibility with fault. Indeed, I still do, and I am consciously working at changing that.

So I will explain what I mean right at the beginning. What has happened to you is not your fault. Your chronic illness and how it has progressed is not your fault. The things you now can and cannot do because of your chronic illness are not your fault.

How you manage your chronic illness is your choice. How you manage your chronic illness is your responsibility. You’ve been dealt a crap hand. What you do with that hand is up to you, and that is what I mean by responsibility.

We have a choice of how to manage our chronic illness, and every minute of every day is a reflection of our choices. Some days I choose to manage my chronic illness by being proactive and booking myself treatments (acupuncture, personal training, chiropractor, etc.). Other days I choose to manage my chronic illness by going back to sleep. My choices change depending on what my chronic illness is doing – this is a necessity. While I could choose to go on a run on days where I’m in a lot of pain and fatigue, that would be an irresponsible choice, because the next day would be worse. However, if I choose to have a nap on days where I’m in a lot of pain and fatigue, or do something that requires limited energy expenditure, that is a responsible choice, because it gives my body the rest it needs and sets me up for a (hopefully) better tomorrow.

This is what I mean by ‘take responsibility for your chronic illness’. Don’t passively allow things to happen, make choices. Even if that choice is to stay in bed, consciously make it. Taking ownership of your actions and reactions is incredibly powerful, even if you don’t do anything differently to what you always have. It gives you a sense of strength, a feeling which I regularly find myself lacking in. It can also give you a sense of achievement. You choose to do a thing, you then do the thing, you have achieved what you set out to do. That’s an amazing thing. Yes, even if that thing is having a shower!

Last year I really grabbed the bull by the horns and took responsibility for not only my chronic illness, but also a substantial injury to my wrist. I decided I would do everything I can to improve my body so that when I did go through surgery, and the subsequent immobilisation of that arm, I would have a lot of good fitness and wellbeing to fall back on. Since then I have attended personal training twice a week (most weeks), acupuncture, and a chiropractor. The first several months I slept around those appointments, as each treatment took everything out of me. I went through months of napping in the morning, in the afternoon, and then sleeping through the night. Now, after almost a year later, I am able to walk around without my cane. I went for my second Couch to 5K ‘run’ (it was a slow jog). There are days where I don’t need a nap. This is all down to making an active choice to change the status quo, to respond to my injury and chronic illness by working to improve my fitness and overall wellness.

Sometimes the good choices are hard choices. Sometimes the good choices are easy choices. Sometimes you don’t have the energy to make the good hard choice so you make the easy choice. This is okay. This is being responsible for your chronic illness and for your life.

(I just point out here that I am incredibly aware of my privilege with this. I am privileged to have enough money to be able to afford these treatments. I am privileged to have enough time and energy to be able to attend these treatments. I am overall privileged to be in a position where I have these treatments available to me. Not everyone does, and not everyone can. Be kind to yourself above all and do what you are able, and do not beat yourself up for what you are not able to do.)

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.

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!