Tag: living with disability

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.

Another Dog … Another Failure

Bones
Photo by Isabela Kronemberger on Unsplash

A couple of months ago I got a dog to train up to be my mobility helper.

He was terrified of men. So he was rehomed, and now lives the life of luxury, sleeping on beds and being spoiled. I had to seek outside confirmation that I couldn’t have made it work with him, because he was such a sweet dog, and he was the first one I had tried. But, ultimately, I cannot work with a dog who is terrified of men.

Last week I got another dog, also to train up to be my mobility helper. This time I took it slow. I went out and met him, I took my friend with me to assess his temperament, and then went home and had a long talk about him. I picked him up, and he was anxious, but he never put a foot wrong. He didn’t put a foot wrong the entire week I had him. He was sweet, lovely, willing, and just adapted to every situation thrown at him.

But he had some health quirks that could have been indicative of serious problems, and he smeared saliva everywhere. My amazing human isn’t able to cope with dog saliva, so we agreed he would not be joining us permanently.

I know it’s a process, I know the right dog is one-in-a-million, but I am feeling disheartened by this. It’s hard work to meet the dog, check them over, take them on for a bit, and then figure out how to explain to the old owner why their beautiful, lovely, fantastic, and genuinely amazing dog failed, because that’s what it feels like to them. The last owner didn’t understand, and was very upset by it, and I think that, more than anything, has led to me feeling so bad this time around.

I haven’t given up finding the right dog. Or rather, I have flights of fancy that I don’t need the extra help, that I’ll be able to figure out a way around all of this so I don’t need a dog, and life will continue on as it always has. But they are brief, and generally beaten over the head with a mallet with my leg doesn’t want to hold my weight, or when I have a dizzy spell.

But for now I am going to sit back and relax and rest up. The stress of the last few weeks is finally catching up with me.

An Injury Is Never Just An Injury

Bones

nick-fewings-SG9Ycz2uqGs-unsplash

When you have fibromyalgia, or trigeminal neuralgia, an injury is never “just” an injury.

Three weeks ago a door viciously attacked my little toe.  It was … well it wasn’t broken, and that’s the only positive thing I can say about it!  So the next day my fibromyalgia goes “HAH, PETTY TOE, LET ME SHOW YOU THE TRUE MEANING OF PAIN” and everything from my waist down felt swollen and heavy and on fire.  My joints all the way up to my hips were stiff.  I lay in bed and read trashy fanfiction to distract myself from the pain.  The day after that the burning heavy stiff sensation was only in the leg with the bung toe, and after that it went away completely.

So fibromyalgia is a real asshole when you get hurt.  But to top that off, whenever my fibromyalgia does a flareup, my trigeminal neuralgia does a flare up!

Well today, while sorting rams, I got smacked in the nose.  Fortunately by a hand and not a ram, but still, it was a good thwack.  I went and put cold water on it (the best we could do out on farm) and promptly had a meltdown.

The injury is on my face.  The injury is, specifically, on my nose.  The inflammation will put pressure on the second branch of both trigeminal nerves, and that’s likely to set off my trigeminal neuralgia which I had only just settled down after a volcano pimple on my jaw decided to set the whole thing off (why, oh why, does my face do this to me?).

So I had an anxiety attack, which is kind of understandable.  I don’t want my fibromyalgia to flare up.  I don’t want my trigeminal neuralgia to flare up.  I don’t want to be in pain.

But I don’t really get much of an option, and not doing the things that I love to keep myself safe from injury is also not an option … so I have to be kind to myself when I am injured.  And reduce inflammation as much as possible!

For now it is definitely setting off both trigeminal nerves, but it’s only set off the third branch of one side and mildly set off all three branches on the other.  Here’s hoping fibro doesn’t kick in tomorrow and make all the joints in my upper body stiff and achy!  I’ve got stuff to do!