Friday, 12 May 2017

Sense and Sensitivity (ME Awareness Day post 2)

This is my second post for M.E. Awareness Day 2017.

See here for the other posts:
- The Tale of Two Relapses
- Much Ado About Loneliness


Light, Sound and Touch Sensitivity : What is that when it’s at home?
Essentially my is body unable to cope properly with external sensations. I have such small, precious amount of energy to try and run basic processes in my body, anything extra can often cause my symptoms to get worse. It took me quite a few years to fully understand just how much light, sound and touch affected how ill I feel and how much they impact on my quality of life.




Light
Light sensitive affects me in two different ways. The first is, perhaps the most obvious, that it hurts my eyes most of of the time. Everything becomes a bit fuzzy and I cannot always open my eyes fully because I do not have the energy for my eyes to process the light properly. It is difficult to process information and situations. This often leads to bad headaches behind my eyes, verging on migraines. I suffer from headaches anyway so the light just makes them worse making it very difficult to function or focus constantly. This is why you often see me sporting sunglasses, inside or outside, in a dark room or a bright room, day or night- not because I think I am a celebrity about to be 'papped'!

The second issue, which I find incredible difficult to cope with, is that light causes a kind of physical pain and fatigue. It sounds odd, I know. It is undefinable, underlying pain and exhaustion from any kind of light source, adding to my high levels of fatigue, often making it difficult to do anything.

After several years it dawned on me that the reason I often felt extra awful, even when 'resting', for no apparent reason was because of light sensitivity. When I was feeling particularly bad I would close the world out with the curtains and after thinking about why I had to do this to rest, not sleep I hasten to add, I understood that minutes after I was plunged into darkness I would often start to feel a small amount of relief and release from my pain and fatigue. My body feels better without light because all it is hyper alert and treats light like its attacking me. I just don't always have enough energy for my skin and my muscles to cope with that on top of everything else.

Most of the time I lie with my blind closed, with a tiny crack of light appearing over the top. Sometimes this is too much and I pull across my curtains. Sometimes lights from phones and screens are unbearable, sometimes I sit in a dark room with my sunglasses on to watch a TV show. But there are times for portions of the day I can have my blind up a little to see into the outside world, I never venture out of the house or indeed my bedroom without my sunglasses to hand to at least stop my eyes and head hurting.


Touch
This is a symptom which I with suffer with at a much lower levels than some people. Sadly some patients cannot even tolerate human contact, as even a gentle touch can set off unimaginable pain. I have never not been able to hugged or touched completely. I am hugely thankful for this. I suppose I have a difficulty more with pressure and extra weight on my body, than just the pure sensation of touch.

Clothing makes my skin go on edge, I feel okay in a loose cotton nightdress and very soft dressing gown which I wear everyday, but anything else immediately increases my symptoms. The elastic in underwear or pyjamas and the all over sensation of clothing makes me feel more tired and very aware of my skin and any other pain I'm feeling. Apart from the fact that I would need help to get dressed everyday, I am not well enough to tolerate the clothes at the moment! I have a thin silk duvet as my previous duvet was too heavy for me and along with not being able to move properly underneath it the weight would eventually cause my skin to feel sore. Perhaps the oddest thing my body cannot cope with touch/pressure wise is nail polish! Sometimes I spend a few days painting my nails and often I have to take it straight off as the extra weight hurts my nails, fingers and toes. I don't think I would understand how it can cause pain if I didn't struggle with it.

When it comes to physical touch from other people, the majority of the time I am okay but a few years ago even gentle pressure from a massage would heighten my awareness of the sensitivity of my skin with a painful tingling. This was just one of the hurdles I had train my body to overcome when using massage as a positive therapy on my health. Now gentle, precise massage that is okay and generally beneficial. I have weekly specialised massage therapy but even now sometimes I cannot cope with my legs being even lightly touched with a gentle hand and massage oil. It makes my muscles and skin painful. It can be excruciating and makes me immediately exhausted.

As you can imagine this inability to wear clothes because of sensivity to touch is a huge problem as no amount of rest after getting ready to go out takes away the underlying pain, soreness and fatigue from the extra pressure on my body. As I am only well enough I go out once a week, it doesn't impact on my quality of life all the the time, but it can be highly probablemtic. On the the bright side I do not know what I would do if I couldn't have hugs from my mum!


Sound
Something that I probabably complain about the most- sorry family!!! There are periods of some days where even the creak of a cupboard in otherwise quiet house can make me agitated. In my opinion it feels similar to my reaction to light. My body simply doesnt have the spare energy to always process all the sounds around me. At its worse listening to audiobook can leave me absolutely beside myself. The feeling is hard to describe but essentially it stops my body resting, it puts into what feels like 'fight or flight' but without the adrenaline or the resources to deal with it.

The majority of the time sound sensitivity affects me when I am listening or watching something and I can hear another constant sound at the same time. It could be a tv/radio/music from another room, it can just be a central heating system coming on the radiators making that rushing water noise. It doesn't so much cause my pain like light and touch but it makes me on edge, confused and very, very drained on a bad day.

Some people wear ear defenders, luckily I have not had to go that extreme, but I do have some special ear plugs I wear a lot. They are designed to filter away some background sound. I find they dim excess sound, whether that be traffic noise, people chatting or music but still allow me to hear conversation etc. When I have been able to go to the cinema or theatre they have been an absolute lifesaver.

It is really not the worst of my symptoms but on all days there is an underlying tiredness caused by clashes of different noises and if there are no points through out the day when its completely quiet and my body can rest it can ruin the next few days.


All Together Now
As you can imagine the sensitivity to these normal sensory experiences never really go away and in conjunction just adds to the high level of exhaustion and pain M.E. patients feel. It makes most social situations very difficult and really does impact on our quality of life. As I mentioned in my explanation of light sensitivity, it was quiet a few years into my illness I realised that my senses were causing me problems and extra symptoms. In identifying these I have been able to find ways to deal with with them better and put coping strategies in place. They are just part of my normal life now but I felt it was a topic that might not be fully understood from a non-sufferer and hope this blog post is informative for those who read it.



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