Today is my twelfth ‘Fitiversary’ – twelve years ago today I woke up moving about frantically and uncontrollably. I’d lost voluntary speech and was experiencing painful dystonic tics which twisted my body. These episodes had been happening on and off for a while and I’d initially referred to them as the ‘dying fish’, but twelve years ago they became a much more regular part of my life.
Informally, I tend to call these episodes ‘ticcing fits’, not because they’re actual seizures but because they need similar management. However, a couple of years ago I decided to use the term ‘tic attack’ here and in more formal settings because it’s the most widely used term in Tourettes communities and is more medically accurate.
Tic attacks are sudden intensifications of tics. I often describe mine as being like a fruit machine, where there’s a random mix of elements that might come up – loss of speech, body spasm, stomach contractions, choking tics and full body jerks!
This year my Fitiversary got off to a fitting start (literally), when I started the day with an extremely intense and painful tic attack, on the bathroom floor, that lasted over an hour. I was skilfully supported by Ines and Leftwing Idiot whose calm, sensitive support not only kept me safe but also helped me feel safe. These might sound like the same thing, but from my experience, they don’t always go hand in hand.
This tic attack was one of 14 I’ve had in the last 24 hours, and that’s around seven times more than usual. This increase in frequency and intensity is because I’m not very well, and as I’ve written before, when I’m ill my tic attacks increase significantly.
My experiences over the last 24 hours have made me think a lot about ‘vulnerability’. Last year when I wrote about it, I said: “…the thing is, my medical vulnerability is just a fraction of what puts me at risk. Policies that invalidate my life are a much bigger issue. Systemic oppression is what I’m most vulnerable to.”
And while this is true, and I stand by what I wrote then, the type of vulnerability I’ve felt today sits in a different place and is much more immediate and exposing – it was a combination of my physical state and the systematic and logistical issues that relate to my care.
Yesterday I was being supported by someone new who’s still learning about my requirements. It was only after my overnight carer left, that I realised how tricky and unsafe it was going to be for me and my new support worker.
Leftwing Idiot’s also been unwell, so I hadn’t asked him to step in – even though I desperately wanted to be supported by someone familiar. As the morning wore on and I had several more tic attacks, I felt increasingly vulnerable.
It’s when I most need help that I find it hardest to ask for. After skirting around the subject several times, I built up the courage to message Leftwing Idiot to ask clearly for his help. He responded with kindness and understanding and came and took over, and I instantly felt much safer.
I’m sure most people feel a sense of vulnerability when they’re ill, but I felt this particularly strongly today. I’ve been thinking about it and wanted to tease out the different elements and understand better the issues at play. Here’s what I’ve come up with:
1) Depth of Knowledge – I’m always reliant on my support workers having good knowledge of my body and requirements, and particularly so when I’m unwell. Then, the amount of support I need changes, as does how long things take and how safe or unsafe each task is. My ability to make sensible decisions is often impacted too, and if someone doesn’t know or recognise this, we end up in risky situations. During tic attacks I’m usually unable to speak so I’m totally reliant on the person with me knowing what I need and what to do. There are many small things someone needs to understand, from recognising changes in vocalisations that indicate pain, to knowing when to administer medication. Today I knew that this knowledge was not yet established so I felt very exposed.
2) Energy and Direction – When a support worker is learning the role, I have to spend a lot of time and energy explaining tasks, not just how to do something but also why. This is part of the process and doing it badly could put us both at risk. Being unwell and exhausted I simply needed to be quiet and conserve energy, but I was unable to explain this clearly. I couldn’t give instructions reliably, which put my new support worker in a difficult position.
3) Comfort – It’s unpleasant being ill and today this was compounded by pain, fatigue, and nausea. While my new support worker was offering me lots of care they didn’t yet know me well enough to offer the comfort and reassurance I needed to feel safe and secure. There’s no fast track to achieving this kind of understanding.
4) My Home as a Workplace – My home is also all my support worker’s workplace, and I feel a responsibility to maintain a nice environment for them to work in. Most of the time it’s fairly straightforward, but when I’m ill or upset I’m more conscious of this and feel as though I don’t have space to be miserable or grumpy, or quiet or ill – or that I’m failing to be a good employer. This is an internal pressure, rather than anything that comes from those that support me, but it’s important for me to acknowledge this complex reality.
As soon as Leftwing Idiot arrived I was able to relax and rest.
My experiences today helped me realise how remarkable it is that I don’t feel vulnerable or unsafe way more often – and that’s a testament to the skill of those who regularly support me.
I’ve written a lot about the power and potential of good social care, how it allows me to travel, go to music festivals, be a good aunty or sister. Importantly, it also means that when I’m sick I have people around me who make me feel safe and cared for.