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!

Taking A Break From Reality

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.

Chronic Illness and the Reward of Achievement

While at an appointment for pain management, the physiotherapist told me something so utterly profound, it has changed the way I manage my life.

When you are chronically ill, you do not feel a reward for doing stuff, achieving stuff. You only feel punishment from your body for doing / achieving the thing, whether that’s by increased fatigue or increased pain. So we don’t actually want to do anything because we are punished for it.

And suddenly so much of my life makes sense. I don’t want to do little tasks, like hanging up washing, because it will exacerbate my fatigue and pain considerably. I don’t even want to un-pack the dishwasher for the same reason. Some days I don’t want to get off the couch, because walking is going to cause pain and fatigue.

Over the last couple of days I have trialled a new thing. It’s a bit of a triple whammy. Instead of trying to remember to do things, and when they need to be done by, I have downloaded a task management app on my phone (and chromebook) and begun adding things to it. Right now I’m trying to de-clutter my lounge, so I’ve scheduled myself a small task to do each day, something bite-sized that I can actually achieve – today was ‘clear the top of the desk’. Yesterday was ‘clear the floor around the desk. Tomorrow I have ‘organise the top shelf behind the desk’ and the day after I have ‘organise the bottom shelf behind the desk’. Now, admittedly, some of this organising and clearing is ‘I don’t know where to put this thing and I don’t really have anywhere to put it right now so I’m going to move it further into the de-cluttering area’, but the majority of it is actually organising things and putting them in their proper place. Once I have completed my task, I get to ‘tick’ it off on my app, and then administer the reward!

This is where it got a bit tricky. What should I reward myself with? Should I have a scaled reward system, so the bigger the task, the greater the reward? What can I give myself that won’t be so expensive so as to be unsustainable?

I asked a good friend of mine who suggested I look into love languages to figure out what will work best for me. So off I went to research love languages, and then self-love languages (which apparently can be different), to discover that I am a physical contact and quality time kind of gal. No real surprises there. But even with that information I was still stumped. I don’t exactly feel comfortable giving myself a hug, self-massages are out because they’re painful rather than relaxing, and I already have excessive amounts of down time.

But I did realise that I could give myself small amounts of very high quality relaxation time by listening to meditation music (courtesy of some random list on Spotify, bless other people doing the work for you!) and lighting a scented candle and just staring at it. It’s a small circle of calm in my otherwise hectic life, and provides my body with powerful relaxation, which reduces the pain and fatigue. It’s also my favourite scented candle.

For other, bigger tasks, I’m thinking about things like a hot shower with music and scented candles, and then massaging my favourite skincare products in. I have a delicious foot moisturiser that relieves tension and pain, and a face cream that helps to soothe my trigeminal neuralgia. For really big tasks, maybe a massage, or maybe I rope my amazing human into giving me a head rub or extra cuddles.

It took hours to work through this, but it is well worth having a think about. I’m hoping that if I can provide enough positive reinforcement for completed tasks, then getting the motivation to complete tasks will be easier. Because I’m tired of being punished. It’s time to turn the tables.

The Possibility of Mast Cell Activation Syndrome as a Component of Fibromyalgia

My flatmate has chronic sinusitis and congested nose. He has had this for years. He’s also had insomnia and really bad quality sleep for years. He’s had all of this medically explored, he’s tried a lot of drugs, and nothing has really helped.

Until he found some mention of mast cells and decided to experiment with reducing his histamine levels. His nose cleared up and all of a sudden his sleep quality improved. His supplements arrived and his chronic sinusitis began to clear up, too. So he kept googling.

He found an article mentioning mast cell activation as a potential cause of central sensitisation – i.e. everything hurts and all sensory input is bad – which is one of the main components of fibromyalgia. So he passed the information off to me and, thinking this could be interesting, I started researching.

Mast cells are the harbingers of inflammation in our body. They release up to 200 different inflammatory mediators, known as cytokines, which do everything from increasing blood vessel permeability to depolarising nerve endings. Mast cells are everywhere in your body, all through your connective tissue, and they don’t care about the blood-brain barrier, either. When they activate, they can either fully degranulate (that is, release all of the granules they hold in their cytoplasm at once) or they can selectively degranulate. A full degranulation can result in anaphylaxis, while a selective degranulation can result in … any combination of symptoms, really. They respond to anything and everything, from an allergen in the environment (hello hay fever, yes, it’s mast cells that are causing that allergic reaction) to an infection (bacterial, viral, parasite, etc.), all the way through to emotional stress and temperature changes.

Inappropriate mast cell activation has been, as I mentioned earlier, linked with central sensitisation, one of the particularly nasty components of fibromyalgia. Mast cells have been linked with bloating and abdominal cramps associated with non-coeliacs gluten/wheat intolerance, neuropathic pain and fatigue … you think it and it’s probably on the list. It’s not incredibly well understood, as many things relating to the immune system are, and it seems like it may be a contributing factor (or the causative factor, in some cases) in conditions like fibromyalgia or chronic fatigue syndrome.

Fibromyalgia and chronic fatigue syndrome are a description of symptoms, rather than a description of the underlying disease process, which is what makes these conditions so varied, and therefore so difficult to manage and treat, because each person requires individualised treatment. In many cases, and especially in mine, the diagnosis of fibromyalgia is reached and that’s it. There’s no looking into any underlying causative agents, it just is.

But during my google-fu, I’ve realised that a lot of my symptoms, including my overreaction to vaccinations, suddenly make sense through the lens of an inappropriate mast cell activation component. All I need to do is too much one day, and the next day I have a sore throat and a bad post nasal drip on top of extra body pain.

While the diagnosis for mast cell activation disorder is a pain in the backside (and not always particularly accurate), the treatment is something I’m able to do myself … or at least a trial of a few things to see if there’s any improvement. So I have quercetin supplements on their way, which may help to stabilise mast cells, along with a combo supplement with chinese skullcap extract. These are the two supplements I have come across that seem to be the initial ‘go to’ for treatment, so I’ll give those a whirl and see what happens.

Excitingly, despite ordering them only last week, they should be here today! I’ll let you all know how it goes over the next couple of weeks.