So what’s the big deal

Last weeks problem of missed medications happened again, but this time it was an absolute classic. For months now Adam has had an alarm set so that I take my meds at 8pm, ready to go to bed at 9, everything has been working fine, except last weekend when Adam switched the alarm off without saying anything, he assumed that I had heard it just as he did and that I knew what it meant. I had heard it, but as he picked the phone up and hadn’t said anything, I didn’t make the connection and just sat there enjoying the TV, luckily he realised at 8:30 that I hadn’t been anywhere. Last night we both heard it and headed to the kitchen, opened the draw where all my in use medications stay and sorted out all my tablets and took them, then returned to watch TV until bed time. I was lying in bed feeling really odd, agitated and with huge areas of mega sized pins and needles, others simply on fire, over and over again I relaxed all my muscles, only to find seconds later they were all tensed up again, making the electrical nerve pain worse than I had felt it for months, then it clicked, I had taken the tablets, but I hadn’t taken my Amitriptyline which comes in liquid form. Last week I managed to go two days without taking my Dulcoease, simply because I hadn’t switched over the empty strip for a full one, I just throw the old one out and despite looking at my pile of pills and knowing something was missing, I just couldn’t work it out. I seem to be determined at the minute to screw my meds up in anyway I can and short of Adam giving them to me, hard as he is either at work or asleep when I take the none evening doses, there isn’t a way round this one. Pill trays stopped working long ago and don’t hold liquids, which I have two of, nor do they help when you don’t change over the empty strips of tablets. This is another of the tricks that no one warns you about that any condition that affects your brain will do, your mind will seek out and find any way possible of screwing up your life up that it can. If I sat down and tried to come up with a list of reasons why drugs might fail to be taken at the right time, in the right quantity or just not taken at all, I wouldn’t come up with half the things my lesions seem to have found and every time I get control, it just finds a new way of messing around with my mental connections to make that fail as well. You never see the funny side at the time, as at the time you have just gone through pain and discomfort that wasn’t necessary, but if I couldn’t laugh at my own idiotic mind, it really would drive me mad.

Amitriptyline, especially in the liquid form, is a medication that I have always found works quite quickly, easily within 15 minutes it had reached the majority of my body, but as always and I am sure this is a spot of madness, I have to wriggle my fingers and toes for it to reach their very tips. I actually don’t think it has anything to do with getting the drug to those far flung points, what I believe is happening is quite simply is that the nerves are to busy causing havoc to listen to anything else, once moved, they reconnect to the main frame and shut up. I have noticed more and more over the years that once some part starts feeling in one set way, be it direct pain, or a sensation like frozen, it seems to have a cell memory if you like, as in that will be what I feel the most in that set space. Every part of me seems to have it’s pet favourite, yes it will have other sensations as well, but they are always short lived and habit brings it back to it’s own speciality. The only thing that makes sense of it to me is that the damage done in that area promotes those sensations, so if it is the left side of the nerve that has suffered demyelination, one thing is causes, the right another, or even down to the thickness of the sheath left.

On the surface sensation symptoms seem to sound so trivial, well what is the big deal about pins and needles, we have all had them at some point in our lives haven’t we, well that was what I thought. I had been living with what I believe now probably where heightened levels, due to my earlier form of RRMS, but when it changed to PRMS all the sensations I had convinced myself were “normal”, hadn’t really prepared me for what lay ahead. To be far it is only in the last 5 years that they started moving off the scale, not only do they last for as long as they choose to, they slowly get more and more intense, no longer the gentle tingling sensation that makes you want to shake the affected limb or stand up, what ever feels like it will work at the time, they get sharper and sharper, slowly spreading over larger areas as well. Last night all my limbs were being stabbed and gouged at, with tingling around in the back ground. Areas can start to itch for no reason, but when you scratch at it, you find you have reached for the wrong place, where you are feeling it, isn’t where it is. Your skin can burn, freeze and spark, or simply go numb. It can feel as though it is sliding off your bones, or is suddenly so tight you believe it will split and these are just the sensations that appear on your skin, that I can think of just now, there is a whole new list for what happens under it. Life is spent scratching at nothing, being in pain yet, totally numb in the same place, there is no rhyme nor reason to what happens, no triggers and no real solutions. Creams and balms do nothing, washing or rubbing even less, it is a case of what works then, not the last time, or the next, now is the puzzle, later can wait.

Last night my skin was going mad, there were spasms and lightening bolts of pain firing in every direction they could find, yet it took me 20 minutes to work out why. It wasn’t the first time I have done something like this and I know with my brain flying solo, that it won’t be the last, but you would think that I would learn and recognise, well maybe I have, it’s just I forgot. Sometimes I wish they could turn the whole lot of, just disconnect all sensation and give me peace, but clearly that can’t be done as I don’t want to lie like a vegetable for the rest of my life, no nerves, no brain, no brain, no body, no life. 20 mls of medicine, that’s all it takes to shut it up, for now, 20mls once a day, any more doesn’t work any better and it’s never totally turned off, it can’t be, so there’s no answer, just to live with it and hope that it doesn’t get any worse, or that it learns to over ride the medication, as what then, they don’t have the answer any more than they do to so much else.

Sensations, tiny little things that once brought pleasure, experience, learning and even fun, all lost, all changed, all turned into something else, something you never thought they could be. Slowly over the years, just like the location of an itch has got lost in the wiring, so have all sensations, touch isn’t what it once was. Some days what should be a gentle brush of your skin, turns itself in to fire on the surface and ice through veins. There is no longer any pleasure or joy from a lover, as their love is no longer translated in to pleasure, pain is all that remains. The spray of a strong shower, no longer feels cleansing and refreshing, now they are cutting deep into your brain, each drop shooting through you like a lightening bolt. Water has to cover as a blanket from a tap, not cascade like the rain, as when it touches you, who knows what it will be then. Some days, just occasionally it all works, some days it feels like life is still there to be felt, to be enjoyed and cherished, but feelings don’t last, sensations can only be held at bay, not fixed, rewired or corrected. For now I still remember how things where, what a soft carpet felt under my bare foot, how it was soft and cradled, not hard or jaggy, I remember every touch, every surface and when things are good I get to feel then again, it isn’t what has replaced them that hurts, what hurts is I can’t choose through mind or drugs to be free to feel what should be there, I can’t even secure a 5 minute window as like pain, sensations change second by second.


Please read my blog from 2 years ago today – 24/11/12 – Endoscopy appointment

My appointment for my endoscopy has arrived, it is on Friday are 1pm. When the envelope arrived I knew as I had an endoscopy about 8 years ago that the big packs where the horrid mix that I have to drink the night before and I thought that the booklet that arrived would simply be to tell my what would happen and when to take the gunk, I nearly put it into…..

1 thought on “So what’s the big deal

  1. You have described so well all those sensations that I can imagine them. It sounds very unpleasant (even the supposedly pleasant sensations). It gives some insight for non-MS sufferers to understand the condition. Well done for writing such an informative blog. Xxx


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