Trigger warning: Self-harm
I regard them with fear and loathing, and I avoid them whenever possible. It’s their own fault. If only they’d be nicer to me, I’d be nicer to them, but instead they keep intruding when they’re not wanted and are a constant, grating, irritant.
I have a really bad relationship with my senses.
Lots of people with ME/CFS have this problem, as do many people with many different conditions from autism to eczema. This is going to be a very me-centric post, about my experiences, my challenges and my thoughts, and I’m also only going to talk here about the five senses that everybody knows about. There are lots of others, but currently I haven’t got the knowledge to talk about them properly.
The situation right now, as I’ve said, is bad, and it’s worse in some areas than in others. Taste is fine, for which I am immensely grateful because I love eating. I’m still as happy to experiment and try new flavours and old as I’ve ever been.
Touch is a bit of a love-hate sense for me. The bad parts are annoying but, for me, relatively easily dealt with. Clothes are, of course, a big factor: anything made of polyester is an automatic discard. Tags are a nightmare which, to be fair, I think they are to most of the population! I can’t stand anything that comes anywhere near my neck because I constantly feel as though I’m being strangled. Tightness is also a big no-no, especially around the waist. My weight always shoots to my tummy and, since tummy fat is designated by society as the Ugliest Possible Fat, most brands assume you want to be pulled in as tight as possible, which I cannot stand. In addition, I’ve cut my hair very short because I can’t stand the way that otherwise it goes all over my face and neck and ears, and keep my nails as short as possible too.
There are some really good things about touch, though, and it’s one of the few things I automatically know how to use in a positive way. If I’m in my room, I can hold and stroke corner (pictured above), a self-soother I’ve had since babyhood and which is in fact a strip off my baby blanket (if it gets lost or broken I’ve still got the blanket so I can just tear another strip off!). The frayed edges are soft and create a lovely gentle little sensation on my fingertips. My second go-to self-soother travels everywhere with me because it’s part of my body: it’s my self-harm scars. I very rarely cut myself these days but I used to do it enough that my arms are covered with scars, some thinner, some thicker, some close together, some further apart. In a similar way to how I use Corner, I find running my fingertips or the palms of my hands over them very soothing, and the advantage is that in a stressful situation I can just seem to have my hands clasped together but in reality I’ve got a finger or two up my sleeve and it genuinely helps. No idea why, but there it is.
Sight is iffier. A lot of the time it’s fine and not a problem, but if I’m tired or other things are intruding it can irritate. Last time I went to a supermarket (about three months ago) I struggled badly. It was noisy and smelly, and I was expending energy on walking around, so all the additional visual input contributed to make it nearly unbearable. The people constantly moving and walking around; the bright bright lights; the colourful packaging; the small price labels; the sheer number and variety of things to look at all trying to catch my eye. After a few minutes I had to go and sit in the café while my mum did the shopping. Sight can also be tricky when I’m tired. I have my chair and desk right beside my window, but on bad days I sometimes have to turn them round or close my blind, because just catching sight of dogs or children running, or people cycling or driving, is too much to cope with. Sometimes even a tree blowing in the wind or the sun glinting off a car across the green is a nasty irritant.
With smell we’re really getting into Everything Is Terrible territory. The ones I’m most able to cope with are natural ones. Freshly mown grass is still great, flowers in the garden are lovely. Everything else tends to be significantly difficult. If I eat in my room, I have to put the plate outside when I’ve finished so that I can’t smell the food remains. If I don’t finish all the chocolate in a pack, I often do the same. Scented candles are a no-no, no matter how pleasant the smell. Most of the bathroom products I use are unscented apart from a few which have acceptable smells. Perfumes and aftershaves make me want to rip my brain out of my head. One of the builders we had last week wore aftershave and honestly, I’d rather have just had his BO. A few weeks after getting it, I’m still struggling at times with the smell of my new chair, which is leather. Smell, like sound, is one of the senses where I’ve definitely developed a knee-jerk reaction of fear and avoidance. I smell anything and my brain sounds an alert.
And so we arrive at sound and hearing, and this is really the absolute worst trigger for me. It began a couple of years ago with a little aeroplane going round and round and round above the house. It did this for perhaps half an hour, then departed – and then came back half an hour later and went round and round and round again, and repeated this all day long. By the winter of 2016 I felt as though I was going a bit mad from it. And at that point it wasn’t just the aeroplane, it was cars driving around the estate, neighbours running their motorbikes, people talking outside, children playing on the green opposite, people talking in the room beneath mine, being able to hear someone else’s TV or music, machinery… all of it seemed to be conspiring to send me crazy. I blew my savings on a set of noise-cancelling headphones and soon I was wearing them most of the time. It was just easier that way. I didn’t have to be always on the alert in case some horrible noise started, or pausing what I was doing and waiting until it had stopped. I was able to relax, to concentrate on what I was doing (and concentration is hard for me at the best of times), and to… well, honestly, to enjoy life more. I can’t express how much having noise-cancelling headphones has helped me.
All the same, there are situations where I can’t avoid noise. It’s hard to sleep in the headphones and while, luckily, our neighbours rarely have late-night parties, there is occasionally some noise that I just can’t sleep through. A huge proportion of shops, coffee shops and other public places play music and that is a thing I struggle with badly and sometimes simply can’t cope with at all. Yes, I can ask them to switch it off, but they don’t like it and explaining takes even more energy on an already high-energy day. There are also noises that can get through the headphones – the sounds of children playing, for example, or very loud vehicles. Most days I can cope with this and on bad days I just have to shut my window.
But a few weeks ago I had a bit of a breakthrough, you know, the kind where you have all the knowledge and stories and science there, waiting, like gunpowder all piled up underneath the House of Lords, and you just need Guy Fawkes to set it all off and change everything. It only has to be a small thing, and for me, it was a blog post.
Square Peggy writes a blog about living with autism, and a few weeks ago she posted about Sensory Mindfulness. This third post in her Sensory Series was the spark to the gunpowder in my mind, and the explosion went something like this:
1 Huh, it’s almost as though she really enjoys these sensory experiences and deliberately seeks them out.
2 That sounds like a pretty nice way to live.
3 I would actually like it if my sensory experiences were a bit more pleasant.
4 I wonder if there are things I could do to, sort of, build a better relationship with my own senses.
Honestly, just a few minutes, and my perspective on my senses had swung right round. It wasn’t that Square Peggy said anything that was especially new to me – as River Tam puts it in the Firefly episode Objects in Space, “She understands; she doesn’t comprehend.” Those particular words at that particular time were the thing that made it all fall into place.
The thing that really astonished me in what Square Peggy wrote was the way she seems to enjoy her senses. In the previous posts in her Sensory Series she talks about her experience of the sea; in the one I’ve linked she writes about how she enjoys the sensations of nature while on her lunch breaks. Joy, and engagement and delight, and the wonder of sharing sensory experiences with others. I had almost forgotten that those things could be a part of the sensory world, and I knew I wanted them.
In the few weeks since I read that post, I’ve been working on improving how I interact with the world. Baby steps. Things are still hard. On bad days, avoidance is still the only thing I can think of to do. I’d like to get to a point where I have things that I know I find soothing and tap into other senses than touch but I think that will take me a while.
On good days, I now sometimes go and sit on the bench in the garden. I feel the sun and the wind on my skin, my bum on the bench and my feet on the ground. I hear the wind blowing in the leaves, the people talking, the cars driving by, the children shouting, the lawnmowers mowing. I smell the grass and the sea. I see the brightness of the sun, the red of the brick wall, the green of the grass. And it is good. Some good days are better than others and I can sit for fifteen or twenty minutes; other times I can only manage five, but it feels good.
Other times, I take my headphones off for a few minutes, or twenty, or switch the noise cancelling off on them, so that I get a little protection but can still hear most things. Again, it depends how I’m feeling and, of course, what’s going on outside. That little flying bugger is still a huge trigger!
I also find myself frequently pausing in my thoughts, whatever I’m doing, and making a quick inventory of what I’m seeing, feeling, hearing, smelling, tasting at the time. I think about whether I like it or not. I’ve remembered that I love the sensation of typing (fingertips again!). I can’t do it as much as I used to but it feels good when I do. I take note, too, of how my body feels in different positions. I think this is really good for me. It’s helping me to build a repertoire of things I like and things I don’t like, instead of just having an instant panic reaction to everything.
My ME/CFS is getting worse, and my senses have gone with it. But they are one of the few things that I can control, or influence, to a certain extent. I thought I was doing that before, but now I’m feeling really eager and enthusiastic about actually nurturing my senses; trying to make friends with them; and helping them to work with and for me instead of against me.