I found myself last night with the strangest sensation in my arms, I couldn’t quite find them. I have lost them before, but what was really strange was that this time not only were they not where they should be, by my sides, it felt as thought both of them had somehow found their way into my stomach. When I have lost them before, I had always been sure that they were still where my arms were, but my hands had somehow moved to be on their sides or lifted up onto my fingertips, last night was very different. I could feel my arms down to my elbows just as they should be, but for the first time they were lost from my elbows down and the position they felt to be in where crossed, not on top of me as they were too low down, their position could only be inside me. It’s odd to find that you have so little control over your body that it can play such a weird trick on your mind. As soon as I made them move, well they returned to normal, yet I couldn’t hold back from lying there for a few seconds just amusing myself by the whole odd situation and it couldn’t have been odder, well at least I hope it couldn’t. I have lost my legs totally once and to be honest I don’t understand how they can disappear and return with such ease, it feels more like the nerves have gone to sleep or become confused somehow rather than dead in anyway, oddly when I lost my left arm, I didn’t lose it location at all, just it’s movement. Nerves are so capable when it comes to what they can create and do to us, they have this ability to change our lives in a second and all without consulting us in any way. Fundamentally PRMS is a disease of the nervous system, but it is so easy to forget that when it does such a wide range of things to the organs and parts of our bodies that keep us alive. I, like anyone who is battling with lungs, bowels, bladder, eyesight, balance, spasms and more, can’t help but see them as the enemy when in fact it is something so much bigger.
I have tried many times when they have vanished to work out how I would manage if I did lose totally the ability to locate my limbs, I know it can happen, so far, well I am lucky in that it only happens occasionally and in a way that makes no difference at all, but it is a reminder that that could easily change. If you truly don’t know where your arms or legs especially are, how would you manage in everyday life. Walking would clearly be the biggest problem as if you don’t know your foot is on the floor or even where it is, how do you take a step without getting yourself in some kind of knot. My only hope is that I have this belief that comes from nowhere that as walking is something we do automatically, as long as I didn’t think about it, it would still work. The beauty of hands is that almost everything we do with them is in front of us, we can always see them, but the problem would still stand that if you couldn’t feel them you would spend a lot of time just being sure they were doing what they should do without destroying everything. Regardless how you cope with such at thing, I so far have no reason to think beyond where they are right now, even if that is inside me. Last night though something did happen, I have from the second I got up been in pain from my left hand again, especially my pinky finger. It has been making typing something of a new experience trying to keep my little finger away from the keyboard and as I am inclined to use the control key a lot, it isn’t that simple. It is like everything I have discovered with being ill until something happens, you actually don’t know how important it was to your everyday life.
I had what turned out for me to be a lovely treat last night, it wasn’t meant to be, it was just meant to be Adam helping me sort out my feet. Over the last few months, I have been finding it harder and harder to actually care for them myself with the result that both of my feet had become caked in a layer of dried dead skin that I quite simply couldn’t get rid of and it was turning into scales between my toes and around my heals. Just as I became unable to cut my toenails, I now can’t fully reach my feet, well not in a meaningful way, so although we have a flip down chair in the shower, cleaning my feet properly beyond a half felt rub with the body puff and a dab with the towel to dry them, means my feet has slowly become a true mess. When I had my shower on Monday, as always I made sure that they were air dried at least, then I did my best to add a thick layer of cream so that at least they would soften and I did what I could to scrape the worst of it off and repeated the process yesterday afternoon. Adam is one of these people who actually doesn’t like feet, so it took a lot for me to ask for his help and really appreciated him saying yes. So last night I soaked my feet in a basin and he spent nearly an hour sorting them out by rubbing them with kitchen towels concentrating on my toes, then he used a gizmo he had bought for his own feet that really makes dealing with the rest quite simple, but the best bit was when he spent just a few minutes massaging in my favourite hand cream into them. I honestly didn’t believe that I would notice the difference of some dead skin vanishing, but my feet feel great for the first time in ages. It’s odd how something so small and so simple as just having my feet pampered could actually make me feel better about myself, to the point that I found once over the worst piece that it was actually rather enjoyable. Part of the reason I asked Adam for his help is that I know the podiatrist will be here soon to cut my toenail again, that’s all she does my nail as due to my curly toes, it is something Adam can’t do. I was so embarrassed by the fact that they were in such a mess that I didn’t want her to see them. I know that is stupid, as she must see many feet in far worse a state, but I still have some pride left.
Something changed in me a few months ago and a lot of the “It doesn’t matter” attitude, retreated. For years now I have been working on accepting that things had to change, that things would never be the way they were again and I had to get used to that fact. I am actually really glad that I did, as I have become as they say far more laid back about many things, but something made me snap and buy myself some face cream and start growing my fingernails, well that was the start, since then, I have slowly been trying to take more care of myself and it feels good. I don’t know why, but the worse my health gets, the more important it is getting for me to at least look and feel as good as I can, even if it changes nothing else, it feels good.
Read my blog from 2 years ago today – 18/03/13 – Home adaption > http://bit.ly/WylkM4
I managed to get the details for Teressa yesterday and the streaming of the wedding isn’t until 2:15 pm so with my OT appointment being set for 10:15, 4 hours before, it should be fine for them being on the same day. I will be totally wiped out by it I am sure but I really don’t want to wait another 11 months, if they put me back to the end of the queue. John, Teressa’s fiance will arrive in the UK on…..
WE MAY BE BROKEN INSIDE,BUT IF WE FEEL GOOD ABOUT THE WAY WE LOOK; THAT’S PART OF THE BATTLE.CRUST OFF YOUR FEET…PINK OR BLACK NAIL POLISH….DYEING YOUR HAIR. LITTLE THINGS, THAT SOMEHOW MAKE YOU FEEL (NORMAL). I’VE BEEN WEARING LIPSTICK EVERYDAY, JUST SO I LOOK,A TINY BIT LESS THAN THE WALKING DEAD.A DROP OF PERFUME, AND I AM THE QUEEN OF THIS SMALL APARTMENT, WHICH IS >>MY KINGDOM<<.FEELING GOOD MATTERS…NEVI…WITH SINCERE LOVE.