Where to next

I swear this house is dropping 10 degrees daily. Despite giving in and putting on the heating a last weekend, I have been forced to tweak it up slightly each day in the hope of finding the point where it can keep the cold at bay. Yesterday evening I found myself on the settee wrapped in my snuggle blanket, with one of those grain bags that you heat in the microwave under my feet, just as I have right now. I have found that if I can keep my feet warm, I seem to then be able to keep the temperature through out the rest of my body bearable. I always have this desire when it is cold like this to just lie in bed and enjoy the warmth that always build there. I remember spending most of one winter in bed, outside the hours of work that is, it was when I was 15 and staying in the YWCA, I lived there for about 6 to 8 months but there was no central heating, just an electric fire that ate money faster than I was earning it. There were many mornings that I woke to find ice on the inside of the windows, Aberdeen has never been exactly warm through the winter months. So I added almost all my clothes on top of the bed which actually had several blankets, just never enough. When I didn’t have the money to sit in a cafe or any where else that was warm, I just climbed in to my bed and stayed there to the next day, although I clearly remember many nights where sleep was difficult as it was so cold. I can imagine if you told any 15 year old today, that they were to have no heating in their room and no where else to go other than that room, that they wouldn’t stand for it, probably going as far as calling in the authorities. I find that actually the most laughable part of it, as today it would be seen as cruelty, it was the social work department who place me in the YWCA when my father through me out.

I seem to be having a lot of pain and discomfort from my diaphragm again, it started in a few days ago, but I was without it for all of yesterday. I was constantly shifting around during the day, I think because I am more upright during the day that although uncomfortable, it doesn’t cause any real breathing problems. Last night I just didn’t know how to sit, it is some how impossible to sit upright on a settee, they simply aren’t designed for it. Either you leaning back which made every breath painful, not in my lungs but as always right across the front of my torso along the line of my diaphragm, each breath increased the width of the band that was effected. By the time it had risen to about half way up my ribcage my breathing was forced into being shallow and to get enough air I had to once again lean forward and rest my elbows on my knees. Leaning forward was just as short a lived position as the same thing seemed to happen in my back, I was in a no win situation, but one I am getting used to. I guess if I sat and thought about it, that I would find that almost everything in my life is now a compromise, with a choice of one pain or another, it’s just a case of which one is worse at that exact point.

I have in the last few days found myself feeling as though I am in the wrong time and wrong place. It hasn’t been exactly like the spell I had a few months ago, but it is unsettling. Every time I loose where I am in what I am doing and my mind runs off by itself, I am finding myself drawn into a time or place that feels right and feels as thought it is were I really should be, not here. This time it is more like a daydream with extra power and not like my mind has lost the plot for ever, it isn’t scary or overpowering, it just as though I am writing a novel in my head, yes that is a good analogy, I’m living another life in my mind along alongside my real one. Concentration has been a real problem for many years now, but it always was a case that when I drifted away from what ever I was doing, it was to do something else, not to go somewhere else. Yesterday it was very specific, I was on a merchant ship during WW2 travailing in convoy with supply’s for the Russians. It’s a weird kind of place to go in a daydream, most people find themselves on a beach of a desert island or somewhere filled with style and colour, I find myself on a grey boat moving with the swell of the waves, not only could I feel the motion of the ship but my lungs were filled with salt, I was braced on the upper deck holding a pair of binoculars looking out for any sign of a U-boat. I know my brain is just playing with a subject that has always fascinated me, the history of that time offers so many different places and events that I could head off to, but I find myself somewhere freezing and wet. I always seem to drift off without warning but with total lose of what ever I was listening to on TV, or what I was actually doing on my PC at the time. The big difference between this spell and the first, is this time I can pull myself out of it and be in control enough to know that it isn’t real and that I don’t belong there, I belong here.

I doubt I will ever understand what happens to our brains when they have been damaged, but when I can’t remember the next word, how is it that I am able to build something so convincing and so over powering in it’s details, when I don’t actually want to? As long as I am in control and I am can put a stop to it, once I realise it is happening again, then I have no reason to fight it or worry about it, it’s just a nutty daydream, extreme but just what it is. If I find I am loosing that control then maybe I would speak to my doctor. A lot seems to be happening in my brain these days, in the last 6 to 10 months there has been without a doubt a downwards pattern, in every section that I can think of. Emotionally I am also feeling what I can only describe as vulnerable, they shift around with such speed at times and with little prompting tears will appear. I know I have turned to tears more frequently, often due to frustration at all the other things my brain will not play the game over. My emotional distress was one of the things they diagnosed with ease and every new test showed more and more damage, so I have no reason to expect it to stop, but it’s hard when it betrays you with ease. No matter what pain my body puts me through, I think what my brain does is far more distressing, it is a future that I for now try not to think about.

6 thoughts on “Where to next

  1. I have not come across it as a symptom of MS but i too have noticed that as long as my feet are warm I can regulate the rest of my body Jen even says that I kick most of the covers off myself in bed but my feet are always wrapped tightly in the duvet 🙂
    The Brain is a complex organ that I feel we will never be able to fully understand but it is true that it does go off on flights of fancy doesnt it

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  2. That’s very interesting. I know you are interested in history, so the daydreams sound like something that would hold your interest. I know the feeling of feeling vulnerable through chronic illness and I do sympathise with you.
    Hugs from me too 😀 xxx

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  3. What a wonderful post again, thank you so much for it. I have been thinking more recently that while I have more or less come to terms with restricted mobility, I find the neurological, memory, forgetting things, not getting the right words out, not retaining information, is very difficult to come to terms with and I find this much more frustrating to deal with. I’m more fortunate than many, in that I can still get around in a limited way with just a walking stick. I don’t mind asking for help these days, people sometimes offer to help etc., but that doesn’t really happen with the memory&forgetting words etc., in fact even close friends&family can get annoyed with you and most other people have no understanding of it and I suppose because they can’t see it&how it’s affecting you? This makes you feel more alone with it too.It’s great to share it with you and others who understand.

    Take care, Marion xx

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  4. Pingback: Lost and in pain | Two Rooms Plus Utilities

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