A flavour of life

Yesterday from the minute I woke until I went to bed, I was listening to wind so strong that some gusts sounded like thunder as it rumbled around the outside of the house. As always when you live in the middle of a huge built up area you don’t see or hear the worst of any storm, for that you need to be out on the coast or worse still, stuck up a mountain somewhere. Hear in the UK though we are really lucky, no matter how bad we think our weather is, compared to what I see from around the world on TV, we don’t really have bad weather at all. To loose the odd tree, or for some homes to be flooded, is nothing compared to the thousands who die each year from hurricanes and tornadoes. Clearly being in my 50’s means I have seen a lot of bad weather, but despite what everyone says about Global warming, the worst storm I have ever see was in Aberdeen when I was in my teens and that was what I call a real storm. Wind that didn’t stop, rain falling so hard that it flooded everywhere as the drains just couldn’t cope and lightening one flash after another without a break of more than a minute or so, I know I counted them all as I watched with my nose pressed on the window in awe, it was amazing. Getting to school the next day was a case of crossing the road every 100 yards, just to get past all the debris from trees, gardens, houses and so on, nothing I have lived through has measured up to it, nor has the quantity of snow I saw a few years before, or the summer of ’76 when temperature were in the 60’s over night. Glasgow on the other hand, where I have now lived nearly twice as long, doesn’t have weather, just grey drizzle interrupted occasionally by the sun.

For the last few weeks I have been having pain in the left side of my neck, across my shoulder and down into my arm, it’s been driving me nuts almost everyday, not just because of the lightening strike pain, but because the whole arm is feeling more and more sluggish. After loosing my arm from my elbow downwards several years ago I have become used to the mad things that that arm now does, as I said to Adam on Tuesday when he caught me clearly in pain, I have given up trying to work out what that arm is doing. This morning though it is heavier and more useless feeling than I have become used to recently. The only place it feels right, is when I just drop it and let it hang doing nothing and I tilt my head as far as I can to my right side, stretching everything in my neck and shoulder, then it starts to feel at peace. I have still find it odd how my body seems to tell me what it wants me to do, even when often it is counter intuitive, if I follow my instincts I normally find the relief I am looking for. Clearly though just sitting here with my arm hanging lose and my head on it’s side doesn’t exactly make typing or anything else easy, mind you it is far more sensible than some of the positions I have found myself in over the years.

Today really isn’t my best one as on top of that I am also fighting with nausea again, breakfast was a half done dish, I couldn’t take even one more mouthful as I was sure that if I did, I would have lost my meds that I had only taken 15 minutes before. As always, regardless what is causing that feeling of wanting to throw-up it always goes hand in hand with temperature spikes, so my dressing gown has been on and off several times. It is clear already that today is going to be filled with irritations not drama, strangely I think I prefer drama as at least you know that that settles and life goes on, all these small irritations really drive you to distraction, no sooner have you fixed one thing and another appears. If I were to start at my toes and work my way upwards, well I could make one of those huge and pointless lists, that as the day just grows and grows and grows, pointless as there are no true fixes to any of it.

I hadn’t really thought about it until today, but my PRMS has really moved it’s focus to the upper half of my body in the last year. It used to be my legs that were the thing that plagued me with pain and spasms, now I think that that might well could be put down to the fact they don’t like being walked on. I first noticed a great improvement when I got my wheelchair, it was one of the reasons that I fell in love with it within having it for just a day, the difference was so striking. What I hadn’t really picked up on, is the fact that my now reduced movement in the house, has also reduced the pain levels again. I know it isn’t just the hugely improved pain control medication that I now have, as the difference I feel in my legs isn’t in line with the rest of me. The only explanation is the fact I hardly actually stand any longer. Nothing makes a difference to the spasms, they still happen as they always have, but that is where the pain control has made a difference. Not so much to the sharp one, but the spasms that grip and don’t want to let go and often last between 10 or 15 minutes at there worst, well that is one area that good pain control makes a difference. For some reason the improvement I have had in my legs, has more than been replaced by what is happening higher up, it is almost as though it knows it has lost one battle, so it has gone to work on another. My COPD was just the start, along with everything going wrong with my guts, both have been causing more and more issues in the last few months, as is clear by my posts. I don’t manage to get through an hour, far less a day without long spells of pain in places I never had the slightest issue with a few years ago and it appears that new pains and sensations are appearing weekly. All this week I have had a new problem with eating, I have suddenly started to get strange sensations in my mouth when ever I put food in it. To be honest, I don’t think it is helping much with the feeling of nausea as if everything in your mouth feels wrong, your instinct is to get rid of it, not swallow, but I have to swallow or I wouldn’t eat. I suppose that it is clearly possible that the nerves in your mouth can be affected just like any other nerve can, but I wish it would get bored and move on to something else. This morning when I took a mouthful of porridge, my hard and soft pallet started to tingle and spark, as though I had something distasteful in my mouth, the actual flavour was normal at first, but I was getting signals that it was quite simply harmful and the more I ate the more it began to feel as though the texture was off, yet it was perfect at the start. By the time I had made it about half way through the actual flavour started to change, it’s hard to explain other than to say it wasn’t right, not like it had become tainted by something, more as though part of the taste was missing. I noticed the same thing yesterday at lunchtime, what I was eating just wasn’t right, the base flavours are right, but the more subtle flavours that make it something we really want to eat, had gone, far worse than just bland.

The more damage my PRMS is doing to the myelin sheath around my nerves and my brain, clearly the more damage will be done, it’s just scary when you don’t know what will be next, in some ways from what I have read, it is like having a stroke in slow motion. Bit by bit I am disappearing not yet as a person, but clearly as a working body. Like I said yesterday, I though MS was pain and wheelchairs, if only that was all it was, it appears that the truth of MS is that it is anything it chooses to be and does what ever it wants. If there is a nerve, there is a way it can destroy or distort what it does, in other words, there isn’t a single millimetre of our bodies that it can’t do something to and I will continue writing about ever single bit of it.

Read my blog from 2 years ago today – 11/12/12 – Control 

We seem to have plunged into the middle of winter, it was minus seven last night and I have no problem believing that the house is freezing. Again this morning I was feeling terrible when I woke up, but I think I have the reason why every morning lately had been a bad start, I think it has to do with………..

2 thoughts on “A flavour of life

  1. I find MS is feeling like being held to ransom to the unknown, I have no control over anything it decides to attack and I’m bring held unaware and vulnerable to the ruling it’s took and my life is not my own anymore and at my age of 42 it’s the scariest thing yet I can’t be afraid as I’ve got 5 children who need me yet at the same time I need them more than they will ever know. I’m bed bound now so I lie in wait wondering what will happen next I don’t write on media social networks IE twitter and Facebook as my children go on it and I don’t want them to see how I’m feeling affected but I have no doubt what so ever they already know. My children age from 24 to 11 they need a normal life, well as normal as possible as I have this illness not them and I try and keep it that way as much as possible. Yet I find reading your blog helps put thing into perspective and helps me realise I’m not alone no matter how much I feel that way


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