I woke a 5am this morning in pain and in no doubt that I needed a booster tablet, as I swung my legs out of bed so I could sit up and reach the glass, I was instantly struck by the fact that the bedroom was freezing! It hasn’t been that cold since the middle of last winter and as always happens on finding something I didn’t expect, it shocked me into being totally awake and as follows that event, I wanted to go to the loo. I have always thought the idea of a heated toilet seat was something rather stupid, but this morning I was suddenly in favour of one. Three shocks into life was just too much and I headed into the kitchen for a cigarette, something I seem to be doing far more than I ever used to and I can pin totally to only one thing, the fact I have cut down my real cigs so dramatically and switched to the e-cig. I had just lit up and settled myself on the perching stool when I heard Adam moving around in the hallway, the kitchen door was shut and as normal, I didn’t bother putting the light on, I don’t need it. I listened to him checking the bathroom and then back across the hall to the bedroom, it must have clicked at that point as to where I was and that I hadn’t collapsed somewhere and he headed back into the living room, this time not closing the door so he could hear my movement, he really has taken on the role of carer, just as we all do when we have a small child, waking to the slightest thing. By the time I was back in bed I was so cold that I found myself pulling the duvet up over my mouth so that my slightly warmer breath could pass over my body, I had once again become unnaturally cold, right through to the bone and beyond, defrost mode, was going to take a long time.

The house isn’t actually as cold now as it felt 4 hours ago, I know I have on all my layers, but my face and hands are exposed and they say cool, not cold. The scab inside my mouth has survived into another day, but the good news is the lumpy soft area feels just that little bit less lumpy, no smaller, just smoother. I have had a thought as to how and why I have managed the impossible of a scab in what is, after all, a wet area, my meds. I spend a large part of my waking hours sipping coke to keep my mouth moist, if I stop it dries out, just as it does when I am asleep, I wake with no moisture of any sort in my mouth at all. I can’t remember the last time that I woke without my mouth and tongue not feeling like card strangely the tip of my tongue seems to turn tacky, if I touch it to say a tooth of even my gum, I have to pull it away, not just move it. If I am lucky, I will have a tiny amount of saliva still caught under my tongue, by running the tip through it and agitating the glands slightly, I normally find enough to make it bearable until I have something to drink. I am guessing that my 11 hour night time sleep was long enough for it to form a good deep scab, so it has held up to all the coke, saliva and food. The first couple of years of having a dry mouth drove me mad, I even landed up asking the doctor for some gel to lubricate it, but to be honest the gel only helped for about 20 minutes at a time, it was more hassle than it was worth and didn’t taste that great. I have had a constant argument with all the drug companies who produce anything that is required to be used forever by people like myself, they make everything sweet. I don’t like sweet, I don’t even like cakes and chocolate that much and I hate things like chewing gum, sweet, sweet and more sweet, why don’t they offer an option, sweet or savoury? I would far rather have something that tasted of Marmite or Stilton cheese than something that supposed to taste like strawberries or any of the other horrid things they falsely flavour stuff with. I can see all to easily how someone who doesn’t have to live on drugs might think “well it’s only a couple of times a day”, when you really don’t feel well and would rather just not have to take anything, even once a day of something that makes you want to throw up, is too often. If you then scale that up and imagine having to take that stuff, twice a day for the rest of your life! Getting the picture?

These days I take a mixture of tablets and liquids, I have a different selection due to the fact that I do all too often have problems swallowing. It isn’t a joke to say that I can choke on my own saliva, I really can! The decision was made when my swallowing was really bad that as much as possible I should have my medication in liquid form, which I agreed with. Not only do drug manufacturers not offer different flavoured medications, they don’t even have a choice for all of them between liquid and tablet, hence the mad mix that now lives in the kitchen just waiting for me. Swallowing is like everything else with MS, it is phasic, I don’t know until I take my next swallow if I will manage, or if I will choke, it isn’t as easy as to say, well take the tablets when things are good and liquids when bad, no one including me knows which it will be until it happens. Most chronic illnesses have an element of living life on a roulette wheel, I guess you could say that it makes life interesting, I can think of millions of things that keep me interested in life, without my own body getting in on the act.


Please read my blog from 2 years ago today – 25/08/12 – Stress Busting

My distraction continued throughout yesterday and guess what it is still here, the good side is it is I also don’t mind today at all. Not only am I not fighting it I don’t even feel like trying. There is a flow that has developed in my life since I overcame the shock of being unemployed and no longer the bread winner. I hate admitting……