“Had a good sleep?”

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“Did you have a nice sleep?”, he said it as a jokey comment, meaning to make light of the fact I’d just come around from a collapse. Words very similar to this are said to me all the time and everyone thinks they are being light. I suppose some cases there’s a genuine misunderstanding and they really think I’ve been asleep. (see photo)

I used to watch thrillers where one of the main characters was dosed with a paralysing agent. They would be lying on the floor unable to move and watch as a murderer entered the room. They would be completely at the mercy of the murderer. That sense of being helplessness in the face of danger is not an uncommon fear, we experience it in dreams, being frozen in the face of danger. In all cases it is very unpleasant and not something anyone would crave.

It is similar, if not identical to what I experience. It was when I was first struck with what I now call ‘collapses’, that first I experienced the reality of this. I become like a rag doll, unable to control my movements, not a rigid paralysis, but a complete loss of voluntary muscle control of my arms, legs and neck. My eyes are also closed. I can breathe and with some effort and concentration, talk, I have gained better control of this with practice. Over time I have realised that I can breathe and talk because my core body muscles are not affected, just everything attached to my core. I should just point out that danger, pain, discomfort or shock do not cause my muscles to move. One other thing that demonstrates this is not a choice (me just deciding not to move), but something neurological is that my autonomic reflexes are muted to non-existent when I am in a collapse. I know this because they have often happened when doctors are around and can run tests. This is a very rare condition and according to doctors I have chatted to, know of only a handful of people this happens to. Because of the sudden onset of these episodes, they are classified as fits or seizures and I am not allowed to drive or operate my wheelchair on a public highway or path. It’s also why I have bed sides and a supported wheelchair. I have written elsewhere about this (The cot sides).

When we sleep, we are obviously vulnerable, but we are also unaware of that vulnerability. In a collapse I am fully aware. I am completely conscious. So that if I am lying or sitting fully awake in a busy environment hearing activity around me and not knowing what might happen it is very unnerving. That’s why it took me so long to venture out. I used to choose to stay inside. It was safer, I recovered quicker because I was less anxious of what would happen, and it was less tiring. I had to learn to cope with the anxiety to be able to face going out. I learnt to control my fear by meditation, breathing deeply and focusing on God. In my head, I pray, sing Christian songs and sometimes just take my mind on imaginary journeys, all to distract myself. This doesn’t take away from external jolts into reality that can cause me a sudden and unpleasant shock. Even something as simple as someone suddenly grabbing my arm to say hello is shocking when you don’t see it coming. In my wheelchair if a child decided to switch on the power and operate the chair you can imagine the consequence. Hence, when I am in a collapse in a public place Mary or my carer stays next to me. In a park or garden there are extra nuisances, wasps, bees, even flies. Have you ever had a fly crawl on your face and been unable to brush it off? Or what about a bee? I have, it’s not pleasant. If you start to think about it, you will realise why I must have someone with me. There are many hidden dangers if you are on your own in a public place and unable to function. There’s also the added possibility someone might phone 999 if I was unattended and looked unconscious.

Sleep is refreshing and leaves you feeling ready for the day. After a collapse I come around with achy muscles and often very relieved it is over. They are not in the least comparable. That is why I don’t really like it when people say, “had a nice sleep?”

I realise that it must seem as if I have many criticisms to make of what others say. I am just as likely to say the wrong thing. I only point out unhelpful comments to try to educate and help people. I have had things pointed out to me many times.

Here are some of my classic blunders in the things I say. Taking the credit for what others do is a big one for me. Very often when Mary arrives back and is chatting to my carers to catch up, I will chime in with how “We, have washed up. We have hoovered. We, have tidied this or that.” The funny thing is the carers never point out I was just watching.

I am far too quick to criticise when I don’t like something and far too slow to thank Mary or my carers. It’s easy when you are limited to get focused on yourself, your world does get reduced, so in a way it’s understandable. But that’s never an excuse. It’s because I realise that I need to learn and get better that I also share things that may help others.

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Me in a collapse at RCH, Dawlish. You can see why people think I am asleep.

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