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.

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.

The Difference Between Abuse And Care

Photo by Sydney Sims on Unsplash

I had a very interesting discovery the other day.

I had a friend make a joke on one of my posts that suggested I might have a diagnosis other than fibromyalgia. She’s suggested this particular diagnosis ad nauseam in the past. I didn’t take it well. I was upset and antsy and, after some prompting from another friend, I politely set a boundary of can we please not with this topic, and how it makes me feel.

And she apologised. She apologised, explained she had been trying to make a joke about how she could empathise with my experiences because she has the other diagnosis, and the injury I had experienced is one she could imagine herself doing. Then she apologised for missing the mark with the joke. And none of it was ‘I’m sorry you feel that way’ or anything like that, it was a true and genuine apology, taking responsibility for what she said and how that made me feel.

It was freeing in a way I cannot put into words. Suddenly I wasn’t offended by the joke, and I could feel her care and consideration for me. It increased my love and respect for her a thousandfold.

This is totally different to the friend I lost. During my diagnosis process for both fibromyalgia and trigeminal neuralgia, when the doctor and I were both pretty sure what I had but were doing the formalities, she would send me messages with all sorts of different things I could have. Constantly. I rarely mentioned any of my symptoms past ‘ow’. She never once asked about them. And she was saying ‘oh what about this? and this? you could have this!’ I repeatedly told her we were pretty confident it was fibromyalgia (or trigeminal neuralgia) and it felt like she was dismissing my knowledge and my doctor’s knowledge of the situation.

She never apologised. She would only say ‘I just don’t want you to have x because it’s chronic and it’s awful’. That is not a place of care. That is a place of control. Which pretty much summed up our whole relationship.

Because of my long history of being abused (right from infancy through to this latest ‘friend’), I have difficulty with identifying when people come from a place of care and love. It’s often only once I begin to establish a boundary, and they accept it and apologise for stepping on it that I can tell the difference.

It has started healing a little part of me that was very raw.