Mmm, really? That’s weird!

I’ve really struggled to write today. I’ve written something but I hate it so much, I can’t publish it. I don’t know why I’ve struggled so much. Which is amusing in itself, in that what I wrote was all about the weird things that have happened to me through this illness that I just don’t get. Today, however, my words are tripping over themselves and I struggle to type without countless mistakes. I don’t get it though because I woke up feeling good and refreshed for the first time since Sunday. Today, however, I can’t write!

Today, it would appear that my brain won’t establish a coherent series of words to form a sentence. Even when I can form the syntax appropriately, it appears I can’t create a sentence that flows and engages. I don’t get it.

There is so much about this illness that is weird. The one that seems to make fellow M.E. patients quite exercised is our often sudden inability to drink. I’m not talking about an inability to drink without getting embarrassingly drunk but to drink at all! Alcohol as a whole repulses me! Seriously, it’s disgusting stuff. I keep having sips of people’s drinks in the hope that it has passed but oh it is just vile stuff. Yet I can drink a gin and tonic! It appears nothing else but I can drink a gin and tonic! Not a big one and I often have to drink one over two days and certainly can’t have more than one a week but I can drink it! I don’t get that! My husband says it’s because it’s bitter but other bitter drinks slip into the vile and repulsive list so easily, he can’t be right.

I don’t have to drink, I don’t need alcohol to enjoy a night but lord a glass of wine with a friend, a cider on a sunny day how lovely! So alcohol quite easily fits into the weird and wonderful world of M.E.

My mother has laughed about how some people she knows (of course I’m not referring to her many brothers and sisters) as they get older have started to have conversations across each other and she struggles to follow them! That’s me, to have a conversation with more than a few people at a time or if there are loud conversations going on nearby, I lose track of my conversation! I struggle to hear what is being said over the noise.

It’s not like my hearing has gotten worse, oddly it’s almost like it’s improved. It’s almost like other noises become amplified around me, making it more difficult to differentiate the sounds that make up the conversation I’m involved in!

Myself and my husband were driving the other day with the radio on. A song only just started when he changed stations. I quite liked the song so understandably asked why he had been so inconsiderate! He responded with, “high pitched noises really irritate you so you will just turn the sound down!” I’ve always turned up the music in the car so loud that he asks me to turn it down, now it appears I often turn it down so low he can’t hear it. Why? No idea! It’s just another weird symptom in a list of weird symptoms.

Have you ever noticed just how colourful our world is? Have you noticed how bright and cheerful it is? Have you noticed just how attractive shops are? I have. Recently, I can’t but notice how bright and cheerful everything is. How on some days I can cope with it and on other days it makes me feel instantly dizzy, gives me instant headaches and makes me feel thoroughly exhausted. My eyes flick from colour to colour, my eyes become bombarded by lots of messages and I seem to not be able to compute it all into something logical and enjoyable!

Golly, don’t I sound like an old,lady, “oh these modern shops, it’s so hard to work out where to go and what’s in the shop!” Can you imagine what I would say if they let me lose in a nursery school at pick up time – imagine the screaming children, the nattering parents, the bright cheerful educational posters and toys – ohh!

I find I write best in bed, first thing in the morning with the curtains closed. I believe that’s because it reduces the impact on my senses, allowing me to focus all my senses and energy on writing rather than having my energy diluted by other stimulants. It’s an odd one. Why do light and colour affect me so and why does their impact on me fluctuate so much?

There are lots of weird elements to this illness. Not least among them is why do random parts of my body suddenly and for a varying length of time feel sore to the touch. My doctor does have a name for the soreness but I don’t recall it. Some mornings I’ll wake up fine and then suddenly my knee will be so sore to the touch that the duvet is uncomfortable. An hour later it will be gone. On the other hand, the soreness can build up slowly. Yesterday all day my arm was internally getting sorer, by the afternoon it was externally sore to touch, by the evening I could barely hold it up and it was extremely sore to the touch. However, it didn’t keep me awake and today it is fine. I don’t understand why – I’m guessing it’s the neurological elements.

Lambing Live! Now that’s a weird part of my illness. For those not from the UK it is a wonderful programme that does exactly what it says on the tin. It shows lambing live! Why is it a weird part of my illness? It makes me cry! Ahh it’s not just the sweet little lambs, it’s not even the sweet little lambs that die but it’s the unflinching commitment of the farmers, it’s the way they tickle a lamb absentmindedly whilst being interviewed. Apparently easy crying is definitely a neurological element so don’t accuse me of going soft or anything!

So my world is constantly full of weird symptoms, some come and go. Some come and take up residency rights. I think people can get feeling fatigued (we’ve all had an horrendous cold) though perhaps not constant fatigue. I think we can all get pain (we’ve all broken something or some how ended up in pain) though perhaps not constant pain. I don’t think people would so easily realise the other symptoms or indeed perhaps get them.

Once again, I never intend to moan or sound pessimistic. I’ve actually shocked myself about how positive I am overall. I’m not saying I don’t ever find it hard – of course I do, I’m human, however generally it doesn’t get me down. I just want to write so that others understand my illness and my situation better. Rather high-mindedly, I’d love if my words resulted in people getting how somebody they know who suffers from M.E. might be feeling.

So today I shall wait intrigued as to what weirdness my body will throw at me – if indeed anything!

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4 thoughts on “Mmm, really? That’s weird!”

  1. Thank you!!! I have had M.E. for 7+yrs, and I completely understand about the intensities of noise and colour, and the information overload from all the surroundings. I often refer to my brain as a Commodore 64, or a like dial-up internet connection unable to process more than on thing at a time.
    I truly love how you’ve expressed yourself and articulated your experience! It is so very validating and comforting to know there are other brains having the same thoughts, questions, and reactions! It’s very healing for me (and probably many others)- like a big mental hug! Though I’ve had M.E. for 7 yrs, it’s only been the past 1.5 yrs that I’ve understood what was happening to me. So the validation and acceptance still feels new and very healing (if it ever gets old?). ….for the first 6yrs I was in, what I call, a state of unhealthy “optimistic” denial.

    In gratitude,
    Angela from Canada

    PS: it doesn’t sound like moaning or pessimism! And thank you dearly for the energy you spent on writing, and forming sentences. I know how difficult it can be- this took me a little while, haha.

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    1. Thank you! You have no idea how validating it is to receive such comments! I’m new to all of this and still trying to get my head around it (if possible!) so to know I’m getting it right helps to reassure me that my thinking is along the same lines. Most days I really enjoy the writing process although today it was hard work! Thanks again, Karen

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  2. I think that when you are tired your brain puts things together in different ways. When I am over stressed things don’t necessarily follow in an order that the rest of the world would find logical. (When I’m not stressed the rest if the world would wonder at my associated logic!)

    I don’t have M.E. But I do work too hard. When I’m tired, cartoons make me cry. Not sad cry, not tired cry, not happy cry just they hit some emotional trigger and I cry. Oh and when the hero does whatever the hero needs to do in a kids film (lightning McQueen wins and I’m in bits!) weird triggers like you say.

    I don’t consider it a problem, there are just certain people around who laugh slightly louder when the hero is doing their stuff at the end of the film.

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  3. Alcohol intolerance is it seems a universal symptom in ME, though it does not receive prominence in the definitions, I think it should.

    It is a nightmare to adjust to living with ME, certainly we can all agree on that! Luckily it sounds you have been diagnosed early on, so you have an excellent chance of recovering if you work on treatment early on! So please look into the treatment options in the forums like phoenix rising and in books but don’t be fooled into doing graded exercise or pushing through exhaustion and illness or doing CBT that tells you you aren’t sick and need to exercise.

    Good luck!!

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