Shopping trolley chairs.

I had pushed myself to do as much as I could yesterday in my much shortened available time, as I really don’t like things missed or not done, so instead of completing then playing a game to relax, I had no time for the game. By 7:30 I had made it to the settee, but I was in pain all over the place and muscles were twitching annoyingly. Routine shot by the entire day had left me physically shot as well. I really don’t think doctors who don’t specialize, and in some cases those that do, don’t understand what physical effect any day has on someone with MS. If they had to spend a week in my body I would guarantee you thing would change.

The last couple of days seem to have taken there toll on me, although Thursday was a normal day I was too tired to deal with much of it. With that as my base yesterday was just too much, as by last night I couldn’t even slip into sleep with the easy that I normally do. Most nights I lie down and between ten and thirty minutes, I am gone, not so last night. I have for years now used a relaxation technic that always works no matter what my pain is like, as long as I don’t go into a string of spasms, there are no problems. With in seconds of lying down my entire skin started to burn, with areas of sever pins and needles, numbness and shooting nerves, all the things that relaxing have no effect on at all. I remember hearing Adam go into and come out of the shower, so that was 45 minutes, and I think it was the same again before I settled into what was a disturbed nights sleep. I kept finding different bits of me outside the covers, not just frozen and some drained of blood, interesting as many were hanging off the mattress. I often find this is the pattern when I am over tired, sheer exhaustion logically to me would add up to dropping into a comma, shocked a few minutes latter the alarm telling me I have had 10 hrs sleep. Bodies are strange and permanently annoying things to have to live inside.

When I got up this morning it was just ahead of the alarm as I needed the loo, but I was happy enough to get up and get on with another day. I remembered yesterday when I made it home that when I fist sat down on this chair at my PC, I was amazed at just how comfortable it felt. You aren’t allowed to take your own wheelchair to the hospital, once they have carried you to the ambulance you are strapped into a normal seat, then at arrival at the hospital they fetch one of those terrible patient transport chair. Although they have wheels I wouldn’t call them a wheelchair, they are more like normal chairs with shopping trolly wheels. To make things worse they pull you around in it rather than trying to push it, so your view of the world is totally wrong. I think on top of all the other motions they put you through this adds to that sick feeling. Who ever it was who designed those chairs, forgot to add a reasonable layer of comfort, once you have been in it for over an hour, your backside hurts like hell. Getting home and sitting on my double cushion system, of a gel cushion with a blow up one on top, felt like total bliss. Like so many of those feelings, it didn’t last, once again I feel as though I am sat on a mass of pain points and there is no relief. I have now been waiting since the beginning of June for an occupational therapist to come to the house to see if they can supply me with something more comfortable to sit on. I was warned it might be 6 months but here we are at 8, I have phoned them a couple of times, but they still couldn’t give me any idea when they might be here. I am making a guess here but I think they haven’t seen me yet because painful sitting is low on their priorities and they also know they won’t be able to help, it would just be another of those, lets talk and sorry we can’t help visit, so why come at all.

I frequently think about seeing what I can on line but then the normal issue of those on limited income, all these things cost money and normally more than I can afford to spend. I used to look and always land up disappointed, so I suppose that is why I have stopped looking, I generally avoid anything that causes disappointment I prefer to find things that make me smile, it doesn’t remove pain but little does, at least a smile makes me just that bit happier and we all need that.

Relief

It looks as though it is going to be a day of pain. 3 hours into my hours of being awake and my left leg is already volunteering for amputation. Everything didn’t seem that bad when the alarm sounded, but I think I had one sock on and my toes just into the second when it all began. It varies each day when it kicks in, I’m not saying that I sometimes feel full of energy and without pain, there is always a low level or background pain, but the stuff I want rid of varies as to when it actually makes itself known. This morning my left leg started early and by the time I have sorted out all the little things needed to be done before actually really being awake, it was screaming loudly. Now I am sat here, with not one part of it pain free, there is the background and the searing pains all over the place for my toes and soles upward to the top of my thigh. I know I often joke about amputating different parts of me, but when I described my foot having a feeling like it was in a marshmallow sock or numbness with the pain in side, the pain clinic Doctor said that nerves do that, they make it feel as thought thing like feet are bigger than they are. He added in that it was just like people who have lost a limb feel as thought it is still there. I can’t imagine how cheated I would feel to be absent from the offending limb, but to still feel that every bit of the pain was still there, in the same places as thought it hadn’t been removed at all.Like most jokes there is a grain of truth behind it because yes I do sometimes feel that I would be better off without the actual area that is causing me a problem, but take that to it’s ultimate and with in a week I would be a quadrupedal amputee.

Last night, again, it was my arms that were proving that their nerves system was in place and working to it’s fullest mad setting it could. Although the most dramatic pain the ones that make me jump and grab hold of them are in my arms, it is my fingers that I find the most upsetting. Just sitting watching TV with Adam beside me, sounds a relaxing way to end my day, but it is a mixed feeling to be honest. I can no longer sit on the settee in comfort, it is too soft and too low, so Adam moves my gel cushion and adds my inflatable one on top, from their daytime location here on my office chair. The two together raise me about 4 inches, so I am perched slightly above his level, although we are beside each other. By that time of day I have pains all over the place, so much so that I can’t sit back in comfort, I land up leaning my elbow on my knees and hunching into a doubled up position. A position that I am sure doesn’t help much with the pains in my lower legs and in my arms, but there is no position that works better, so what can I do?

I spend a couple of hours every evening in this odd position because I want to be beside my husband and not on the other side of the room. No where is pain free so like my entire life it is a pay off system, to do what I want means accepting something will hurt, I just have to decide which is more bearable, not fulfilling my need or my ability to take the discomfort, more often or not I accept the pain. Life shouldn’t be that way but that is were I am, what can I really do about it, nothing. Yesterdays blog was fired by much I have written here, I now know that I have few options when it comes to my pain control, increasing my MST is the only thing that will be of help in the future. The effect will be a fuzzed up brain, fuzzed brain means less computer time, less TV time, more sleep time. I have to weigh up what my needs are, can I really deal with the pain and still have the things that make my life happy, or do I reduce the pain and reduce my happiness. It’s a hard one. At this second I cope, but will I in a weeks time, to a months time or a years time. I just don’t know and I don’t like not knowing how to deal with things, I am used to having some sort of control over. I guess it is just going to take sometime for me to sort this all out in my head. I will sort it out, I know I will.

A vanilla cure all.

If there was a smell in this world that I would hate to never smell again, for me has to be Vanilla. Pure Vanilla, not mixed with magnolia or any of the other things that air fresheners insist on adding. Vanilla to me takes me back to being a small child and before anyone jumps in with a connection to ice cream, well you are wrong. My mother used to make what she called cornflour custard, the world is now full of different brand so powdered custard but back then I can only think of three, Bird’s, Creamola and Mum’s, alright my Mum isn’t a brand, she also wasn’t a very good cook. I used to love School dinners as they were edible all the time, unlike the stuff that appeared on our plates at home. Yet she had one saving grace to the child that was me, cornflour custard.

All custard powders are the same base, cornflour, flavoring and colouring. Except Mums’ it had no colouring and a wonderfully strong vanilla taste. All she did was heat milk, add sugar, vanilla extract and then the slated cornflour. Once cooked through she served it with a handful of Sultanas on top. Not only did we get this glorious pudding after our evening meal on occasions, we also received it as a cure all. Any time we were ill, this bowl of heaven appeared with the sultanas added as a smiley face, it always worked as well as we always got better.

To this day vanilla is still a smell that means instant comfort and home. Smells link us so quickly to places and to people, last night I made a fruity chicken curry and I was back at my Auntie Lorna’s, she was the person how introduced me to the wonders of Indian food. With at little thought I am sure I could find more and more of them but cornflour custard is the one I still make when I feel unwell with something other than my MS and although my nose doesn’t stop running or my cold doesn’t go away, I still feel better.