Flash Says…

I’m touch sensitive!

Posted on: 2012-07-01

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.

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11 Responses to "I’m touch sensitive!"

Could you give a bit more advice on what kind of interactions are better for you? That’d be helpful. For me it’s natural to hug my friends goodbye and I’m sorry if I’ve automatically gone to hug you and it hurt. Can we work out another way to show friendship at parting if hugging isn’t so good? For example, with Poggs we sometimes hug goodbye and sometimes just say “pointy ends” (the reasons why are obscure). That has the same emotional/relationship/friendship meanings as a hug but neatly avoids physical contact. Are you gonna be one of the Pointy Ends Posse? :)

Usually hugging is ok, and I like hugging (well, people that I LIKE, anyway! ;-)

Hugs are expected rather than a surprise, which helps. I can brace a bit if I know something is coming, so you won’t knock a joint out. Also hugs cover a wide area rather than being small and pointy, like a tap on the shoulder or a squeeze of the arm, or a wrinkle in the bed, which really hurt my skin rather than my joints.

Also, I’m not always as sensitive as I described, it depends on the day. On bad pain days it’s worse, and you won’t see me on a very bad day as I will be at home feeling sorry for myself. If I’m having a bad day I can always say “I won’t hug you because it hurts but bye!” and if it’s someone I don’t know too well I generally offer a hand to shake which avoids a hug.

Thanks for asking though! Hugs are generally fine, as long as I know they are coming and I’m not grabbed from behind or something. So don’t worry about it!

Yes, I get this! I especially get the bed thing. Anything that ends up between me and the bed is discomfort approaching pain – we have a special brush to make sure there’s nothing on the bed before I get in. Wrinkles in the sheet or pyjamas do that too. It affects me in almost exactly the same way.

People banging my wheelchair hurt me too. Clothes too, I generally can’t wear the clothes I wear outside for longer than I have to. Little drafts of air irritate more than I can describe. When I sleep I can’t even stand the feeling of my own hair on my back.

If I’m touched lightly, my muscles will usually react involuntarily, frequently with opposing groups pulling against one another. It makes it almost impossible to be touched with intimacy and enjoy it. So far only two of my partners have ever managed to learn how to touch me without triggering this react, and one with almost 100% reliability.

I do have one opposite, I had always assumed it was just me that had this! It’s always been this way, and I always thought I was alone.

A special brush for the bed sounds like a brilliant idea! Thanks for letting me know I am not alone.

The nearest I get to experiencing this sort of thing is being hyperphotosensitive- it may be fine for all those folks using flashguns or strobes, but for me it creates awful physical pain and temporary blindness.

Hi Jasmin, good to hear from you. I hadn’t realised that strobes etc. are actually painful. That sounds horrible :-( Do you ask people to leave the flash off when they photograph you?

I get very touch sensitive when my pain is bad. It’s usually ok, but when my joint pain is severe my skin goes into sensitivity overdrive. I can’t tolerate clothing. If I have to be up and about (rather than naked in bed) I’ve got a huge voluminous cotton kaftan that’s about the only thing I can stand touching me. Seams, zips, buttons, tags in clothing, waistbands…all of it, is just unbearable.

I have to tie my hair up because even the feel of it (it’s fairly long) touching my shoulders and upper back drives me crazy. The weight of my husbands arm draped across me in his sleep feels like a tonne of concrete. If he pats my arm to get my attention I yelp.

I’ve noticed that during those times I’m also very sensitive to sudden loud noises. Music, TV is fine. But a sudden sharp noise feels *physically* painful.

I’ve kinda decided that the explanation is-my pain levels get too high (for various reasons, mostly a delicate tummy, my pain hasn’t been controlled properly) and so goes into some sort of overdrive. I think my body is *on edge* and gets hyper aware or is sending out so many pain signals they get confused.

I’m hoping that now I’m on painkillers I can tolerate I can take the edge off it before it gets too bad. I was unmedicated for a long time!

All the best to the rest of you who are having these issues, if you get any insight or coping strategies I’d be glad to hear of them.

Until recently I’d never felt a sound as being painful. Then in the basketball arena at the Olympics, every time my husband clapped it was painful. I thought I was being a bit mad so I said nothing and quietly turned away / put a hand to my ear / whatever.

Then we were there again for the Paralympics and it happened again! I had to explain to my husband that when he clapped it actually hurt me. I don’t know if he understood – I found your comment hard to comprehend until it happened – but he was considerate about it.

Only in that one venue. Must have been the acoustics of the place. But we were sitting in different areas each time.

I have the ultra sensitivity to hairs also. I’m always worried someone is going to catch me one day with my hand down my shirt trying to hunt down the offending hair. Once I feel it, it drives me crazy until I get rid of it.
I can’t wear wool sweaters either. Same sort of feeling.

Oh gosh, wool sweaters! No! Knitted are the worst, give me commercial made polyester any day. And NEVER mohair.

I know exactly what you mean about needing to ‘balance’ feelings, and about that sort of physical aftershock you can feel after the tactile sensation has gone away. Sometimes I will also instinctively do it on other people I’m physically close and tactile with too, like if I touch my girlfriend’s face on one side, one side of my face will get massively tingly and hyper-aware until I’ve touched the other side of *her* face.

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