Never alone

I made a wonderful discovery last night, nothing that will change the world but something that made me feel just that tiny bit more sane. Anyone who has a condition that effect their nerves will have had spells where their skin feels to be on fire, but when you touch it there is no difference in temperature from the rest of you. I’m not sure what made me do it but both my hands were on fire and the tingling associated to it was driving me mad, I had just finished massaging it in an attempt to stop it and both my hands were sat on my knees my right slightly cupped around my left but not touching it, I couldn’t believe what I felt, there was heat way above the temperature of my hand radiating from it. I lifted both hands and tested it over and over again and every test proved the same, clear heat radiating a heat far higher than my skin temperature. Adam was beside me so I asked him to repeat the test, I made sure his hand was at the right distance about half an inch above my hand and I waited, he could feel it too, he also confirmed that although my hands were warm, they were radiated heat, clearly higher than that of my skin! Neither of us can explain it, but it does explain how I suddenly feel like I am sitting inside a furnace, my body is radiating a heat that is trapped with by my clothes. I had always noted that when I uncovered my skin, in seconds it would feel as thought it was being plunged into freezing air, the heat was no longer trapped and my skin temperature was returned instantly to normal, something I know I have written about several times. I still can’t explain how in any way I can actually radiate heat so different from my actual temperature. I would be interested to know if anyone else can repeat the experiment with the same results, odd things and this is odd, totally fascinate me.

It’s is one of the things I love about writing, I mentions something and others come back to me thinking they were the only ones to ever discover it. So often they are just those silly little things, like the above, they aren’t the things that will change anyone’s lives, but they are the things that you find yourself thinking about over and over again. It doesn’t matter what it is, but you can be sure of one thing, finding any thing like it on the net is impossible, so you are left once again believing it’s just you! I don’t actually think there is anything worse than that feeling, that no one in the world has any idea just how you feel or what is happening to you. I know that there are hundreds of associations out there, groups the actually meet up and groups that are here on the web, all offer support and advise but not all of us want to be part of them. I did when I was first diagnosed but because of what I found in all of those groups, just wasn’t for me. I was amazed at how every group I came across always had this self appointed leader, the person who had every symptom anyone mentioned and always had to have it worse than anyone else too. Finding the in quotes “normal” people was hard as they lurked around the fringes, putting in the odd word here or there, just for it to be picked up and almost over powered by the goby one.

Illness can make you feel as thought you are totally alone, even when you are still out and about in the world, you are isolated just by the fact you are the one in the wheelchair or with the walking stick. I know that people don’t mean to isolate you but many do it without even knowing they are, it’s just the way they look at you as thought you are from some alien planet. Every time your body lets you down, you are once again alone or in some cases, wishing you are, bladders and bowels don’t care who is around you. Once your body is out of your control, you are instantly no longer part of the world, simply because your body makes you stand out and makes you a point of interest. I for one didn’t like being stared at, being embarrassed and being unable to do anything about it, so to find people at last who just understand how it all feels and are happy to say, yes that happens to me, without making a huge song and dance, is a huge relief.

I spent most of yesterday evening once again trying to find a position I could sit without feeling as though I was unable to breath, I knew that Adam had noticed as he even offered to fetch me a booster tablet. I had done my best to move as little as I could, as I know what it is like sitting beside someone who is always on the move. It’s hard to know what to do sometimes as none of us what to upset our partners even slightly, especially as they already have to put up with so much. Just because I have a named selection of illnesses, doesn’t give me a right to do what I want all the time, in fact I actually think it is a reason to think of what he want and needs even more than I did years ago. We have always been a couple who don’t really socialise a great deal, despite meeting first in a pub and actually getting together in a night club, once we were living together we spent less and less time with other people, something that happens in a lot of relationships. It is rare for Adam to go out now, other than to the shops and once in a while to see his mother or sister, he always spends several hours before he goes checking and checking again that it is OK for him to go out and leave me alone. I know that he is always worried that I will take a fall or that I will need him for some reason or another, so it isn’t just when leaving me for social reason, he checks every morning and before he returns to work every afternoon, that I am going to OK until he gets home again. I used to feel guilty about him closing his life off because my life is closed, I worried about him not having some social life or other, but we have grown into living the way we do and when I have spoken to him about it, he always said that he is happy with things as they are. Illness doesn’t just isolate the sufferer, it can isolate their family as well, it will work differently for other people but we seem to be isolated happily together, without a need to live in any other way. It’s very much a personal thing and each couple will either make it work or sadly won’t as I know does happen, I guess it’s down to love and how you can adapt together. You can be isolated without ever being alone, I know he loves me and I love him, I also know that even when he is at work, he hasn’t left me alone in anyway at all as I always know his love is there.