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!

Holiday Collapse

I’m on holiday. It’s bliss. I’m in a logwood cabin in the middle of nowhere with a friend and our combined four dogs, no humans in sight or sound (although the deer are another matter), and a mountain right in front of us. It is peaceful and quiet. We are in a paddock surrounded on all four sides by native bush, and the driveway into this place curves around a bend so we don’t see the working farm we’re on.

I’ve had my full day of rest, and now I have anxiety bubbling up in my chest, causing my shoulders to hunch and my feet to twitch.

This always happens when I’m on holiday. I have a couple of days where I’m blissed out, and then I get smacked in the face with all the generalised anxiety I’ve been living with and/or ignoring and/or dissociating from since my last holiday, and I spend a couple of days just spinning. It’s a necessary, if annoying, part of my Holiday Collapse. At least I usually manage to avoid getting horrendously sick when I’m on holiday, like I know a lot of other people get.

It’s important, when this happens, to let yourself feel. I’m terrible at this. I don’t like feeling negative things, and I actively avoid them. So when something like this happens I have to concentrate really hard on unclenching my chest and stomach and allowing myself to experience the anxiety, instead of trying to fight it off. It’s not unlike lancing an abscess – you gotta let it all out, and you can’t do that by clamming up!

Despite the fact that this happens every single time I go on holiday, I’m always taken by surprise. It’s silly, really, but there you have it.

And now I’m going to return to my distraction and relaxation attempts. Hopefully this is just for today, I don’t have long this holiday!

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.