Tag: chronic illness blog

Taking Responsibility For Your Chronic Illness

Bones

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

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!

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.

Restless Arm Syndrome

Bones

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!

Taking A Break From Reality

Bones

2020 has been a shitter of a year, and I don’t think anyone has come out of it unscathed. I know I certainly haven’t.

Earlier in the year I damaged my wrist to such an extent that I need surgery to fix it. Unfortunately for me, the first surgeon I went to is faffing about and, as far as I know, still hasn’t even seen the MRI I provided him with. So I’m off to see a second surgeon in the new year, hopefully with a view to getting this thing fixed some time in the next 6 odd months. The result of this is that I haven’t been able to use my dominant wrist – and therefore dominant hand and arm – properly since the start of June. I can’t type much, I can’t hand write, I can’t hold things heavier than my cellphone … in fact, I can’t even hold my cellphone when my wrist is turned at certain angles. I can’t even chop vegetables!

What this means is I basically have a dud dominant hand, and in my line of study, you can’t have a dud dominant hand. And since the surgeon has been faffing about humming and hawing over whether or not to do the surgery (for the record, it does need surgery to reconstruct the ruptured ligaments and tendon sheaths), I’m not able to continue my course of study. At least not until my wrist is fixed.

So I’m taking the year off. And I may not work at all.

I cannot recall a time where I have not had something looming over me, whether that be university obligations or work obligations. There has always been something on the near horizon, or something I should be doing instead of relaxing. It’s a hazard of life, unfortunately. We are only valuable when we are productive, and for many, work is a matter of survival. I’m in the entirely privileged situation where I can afford to not work for a year, to not earn for a year. I mean I’d love to keep that money for other things (like vet bills, or, if I’m really lucky, maybe even part of a house deposit), but I will survive if I don’t.

So I’m going to. I’m going to take this year off, and I’m going to enjoy myself without the need to find a job and work. I’ll keep my eyes and ears out for a part time one that I might enjoy, because it would be nice to work for pleasure instead of need, but it’s not going to be my goal. No, my goal this year is to relax and unwind, sort my life and my health out, and maybe even reconnect with that creative part of me that loves to write.

But most of all, I am going to appreciate this opportunity to do nothing. I’m going to enjoy getting bored. I’m going to relish the feeling of having no obligations to work or to university. I’m going to live.