Setting Summer out

Summer is beginning to appear, yesterday for the first time I was aware of a true change in the temperature. Clearly it has been rising for a while, other wise I would still have the central heating on, but yesterday the house felt just that bit too warm and I actually put my embarrassment to one side and ditched my dressing gown, I haven’t even bothered to put it on today. Now I know most people out there will be really pleased to see it and not only will their coats be gone, but also their brains. Since the end of my first childhood, I haven’t been a sun lover, except for one occasion in my adult life I have never sunbathed and have made a point of staying well out of the sun, going as far as to cross the road to remain in the shade whenever possible. Even with all that care to stay out of it, I still used at least factor 50 sun lotion all over me, just in case I failed to find a route that was cooler and sun free. Two reasons drove that behaviour, the first was quite simple, I don’t understand this desire to make your skin look like tanned leather, grubby and desperately in need of moisturiser, plus the reason I hate it now, from my twenties on, the point I now know when my MS began, sunshine has made me feel ill. I used to joke that I was a vampire in waiting, something I actually worked on as I wore the palest make ups I could buy, not making me white like a Goth, but pale, it looks as though I will have the last laugh as the chances of me developing skin cancer must be tiny.

History apart, I am not looking forward to the new higher temperatures, not feeling well already puts me at a disadvantage, I really fear what this week will hold. Whenever you start behind in the first place there is usually only one way the game plays out, you land up even further behind. High temperature don’t just drain energy, something I know a lot of healthy people find hard to deal with, well imagine then that you are already drained and then add in what the sun does, not nice, but it also seems to increase and deepen the MS brain fog. Living with a brain so sluggish and so deeply covered in a sludge that can’t be removed, causes problem after problem. It isn’t just that your memory is removed, or that you spend even more time just trying to find the right word, it is far more than that. I would actually say that when it is at it’s worst, you are actually in danger of an array of accidents, stupid things that would not be even questioned if things were OK, but when the danger isn’t seen or acknowledged, it has the advantage. I have lost count of the silly things I have done when the fog is at it’s thickest, trust me you feel really stupid when you cut yourself with a sharp knife, something you wouldn’t have done on a good day, but on a bad day, well it’s a bit like stepping back in time, those lessons you thought you had learned are all gone, waiting to be learned again and again.

Summertime can be a highly distressing time of year to get through. I know without sitting here thinking about it, or having to delve back through all I have written to be able to say with confidence that it is the time of year that all the worst mental issues have appeared. When your mind isn’t yours, as that is how it feels at times, you do and say things you wouldn’t do at any other time. I know that I have landed up in tears many times just because I can’t get to grips with what is happening to me, it is the time of year that constancy is more important than any other time. Change, even the tiniest change can really confuse me, make me feel as though I don’t know what is happening or even where I am. I have had several spells over the last 10 years when I simply feel totally lost, it’s a bizarre feeling to be somewhere you know is either you work or your home, but to feel there is something so wrong that you are terrified to do anything. All of this happens just because the sun is at a height that the temperature rises, so when are next out there and you see that person totally covered up, shuffling from one patch of shade to another, don’t stare at them, or even laugh inside, remember that might well be the only way they can hold on to their sanity and not land up feeling like hell.

Every summer that comes around I tell myself that this will be the year that I will survive it, that this is the year that I will have everything set up so that house doesn’t get too warm and that I will be able to make it through to autumn without feeling like death warmed up almost all of the time. Right now I don’t think that this year will be that one, without the heat, I am already more than half way there. Just read back over the past week and you will see clearly just how I feel now, as the weekend has brought me no relief. I am still wiped out and still living with my alien skin and the pain, the strange sensations and wishing that somehow the way to put it all right will just appear, making me feel human again. I don’t know what made me write that but it is so true, I feel anything but human right now, not one part of me feels like it should and not one part of me works as it should, what I am right now, I don’t know.


Please read my blog from 2 years ago today – 16/06/12 – The homecoming!

After a week of stress and pressure that I know I have spilled out on to these posts, I actually have some good news to finish the week on. Teressa my daughter is returning to live in the UK. She has been working for several years now for Sega in San Fransisco a job she has loved but is now going to be…..

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