I’m touch sensitive!
I awoke from pain last night. The cause? I was lying on a small wrinkle in the sheet. That probably sounds ridiculous to you, but it’s only in recent years that I have realised that not everyone feels this way.
As with other physical issues as I grew up, I assumed that everyone experienced the same as me and that if nobody complained it was because they were quietly putting up with their pain, and I should do likewise. Even now I don’t know whether this increased sensitivity is an artifact of the Ehlers-Danlos Syndrome that I was born with, or another peculiarity.
Memories of finding touch painful go back into childhood. I clearly recall my mother touching me, fairly lightly, on the arm. I instinctively yelped “ow!” Her voice was a mixture of laughter, sarcasm and disbelief as she said “don’t be silly, that didn’t hurt you!” But when we visited relatives, she would still remind them “Flash doesn’t like to be touched” as they approached to say goodbye. Perhaps people thought I was emotionally cold, but being touched can be physically unpleasant.
Besides pulling the sheet straight in an attempt to banish wrinkles, I’ve always had a rule about not eating toast or biscuits in bed – the sensation of trapping a crumb between sheet and skin can be quite a discomfort. I also react to a loose hair against me in bed or inside my clothes. Fortunately, I am quite bendy so it’s easy to sweep out the offender!
This reactiveness makes itself known in other ways. My husband will lovingly joke about “my OCD”. He is referring to something I call “needing to be balanced”. For example, if I touch between my first and second finger, I need to touch between all fingers in a similar manner. I feel a need to be equalised symmetrically. But this isn’t a mental hang-up. After the touch, a sensation remains – sometimes a memory of the pressure, or perhaps a tingling. This sensation difference drives me to distraction, but if I am “balanced” by touching every finger (or whatever it may be) in the same way, everything feels the same and I can forget about it.
Some feelings don’t need to be “balanced” – holding a pen, or shaking hands, can remain one-sided. I’m not sure why this is – but sensations that I don’t feel very often may need to be matched.
There are other ways that my sensitivity irritates me, in particular to taps and bumps. I am talking about something relatively slight; if my husband slaps his hand down on the arm of the sofa, I feel the jolt through the sofa at the other end. Today, he flopped down on the bed next to me and the bouncing motion hurt. If someone bumps against my wheelchair, or sometimes just leans on its handle, I feel this, certainly as discomfort but often as pain.
Rarely, I have days when I cannot bear to be touched at all, when wearing even loose clothes is an irritant, when I don’t want my husband to hold me. Fortunately, days of such intensity don’t happen very often.
So, why am I telling you about my “touch sensitivity”? Firstly, in the hope of hearing from people who can relate to this. Do you feel the same? Please share your coping strategies in the comments below. I can’t be the only one with this condition! Are any fellow “bendies” affected? Is this what is known as hypersensitivity?
Secondly, this article is written by way of explanation and apology to anyone who I’ve glared at or flinched from. Perhaps you stretched out your legs and your shoe touched my wheelchair? Or maybe you patted me on the shoulder in a friendly greeting? This is the reason why I pulled away, or gave you an irritated look. It’s about pain, and not that I am being pernickety about personal space… although perhaps what I really need is a cocoon.