Yesterday was my day of atonement and boy was I paying for every bit of Sunday! While I was writing my post yesterday I actually thought that I might just have got away with having a day out of routine, my extra activity and just enjoying myself, well at least until I was writing the last paragraph, I remember starting to feel dizzy but that is quite a normal thing, MS often = dizzy. Years ago I would get the most horrendous spells of dizziness, where I had absolutely no choice but to go and lie down and wait and wait for it to pass, but as time went on they became something of the past and at worst something that I had to put up with for short spells. I thought of it as being something that belonged to the early years and something that was around at exactly the wrong time, when my children were small. Pinning little ones somewhere where they won’t just scream their heads off, whilst lying on your bed unable to move, isn’t easy, screaming just made you feel even worse as it was something you instinctively you want to answer but knowing that if you stood up, you would reach the floor before you reached them.
I think I started feeling wrong around 10 o’clock, dizziness isn’t just that horrid feeling that we all know from spinning round, but when you are hit by the MS version, it just grows and grows, managing to make you feel like you are going to throw up, it is all the bad side of alcohol without any of the good. Just like being drunk, it doesn’t go away when you lie down, it goes away when it is ready. I managed to push through until about 12:30, by which time I was more than just green around the gills, I was positively green from head to toe and I simply couldn’t stand another second of it in a vertical position, bed was the only possible answer. I lay there for two hours, unable to sleep, that isn’t a possibility either, you just lie there with your entire body in a spin and with a growing desire to die. At it’s very worst there are lights flickering and flashing on the inside of your eyelids, I suppose it must be a bit like a migraine but with one huge difference, no headache at all, just a world that defies your every demand to stop and stay still. I think over the years I have tried everything, with little assistance other than using the system I use to relax my body to put myself to sleep. I have tried to work out what it is that works about it and the only thing I can think of is that it gives you something to hold onto while you wait. I can’t see for the life of my how telling each muscle group in turn to relax, stops the world spinning, but working through your body keeps your mind working on something and if like yesterday, you complete it and reach your head, well you go back to your toes and start again, but you get there, it starts to break and you can, at last, rejoin the world. I don’t actually think that it has totally gone yet, I have had a mild hangover ever since and no I didn’t get drunk afterwards, what I mean is that ever since there is still this slight sensation that things are on the move and that it could all fly into action without warning.
It is symptoms like that, that make leading a normal life for anyone with MS, difficult, you never know when or if it will start, you could be at work, out shopping or just out enjoying yourself, places where lying down aren’t an option, what do you do then? It was all easier when my MS was relapse remitting, OK no one believed me that there was anything wrong, but I at least knew there was a chance whilst things were wrong, that anything could happen and once it had gone for a while, I was safe and could live until it happened again sometime in the future. Turning progressive destroyed so much of my life and even when others couldn’t understand why. We all have to make a living, so for those hours you are in the office, well you push on and if you have good employers and it turns into a bad day, you go home and catch up on your work when you are better. But you can’t catch up on a social life, you can’t say stop the wedding I’m going home now and I’ll be back when it’s better so stay where you are. You can agree to going anywhere and as it gets worse, you don’t go anywhere as that precious energy is needed for work and caring for your home. Then it gets worse again and more and more and more just has to go. You become housebound, not because you can’t get down the steps or you can’t walk, you stop going out as everything you have has to go into earning a living, you are housebound outside of work, then that eventually goes as well.
I think it would be fair to say I haven’t had a dizzy spell like yesterday for over 15 years, less aggressive ones probably 4 years, I stupidly thought they had gone, that I had grown out of them if you like, it just shows you nothing is ever gone and the only thing you can say about MS with certainty is that absolutely nothing is certain.
Please read my blog from 2 years ago today – 05/08/12 – You can only be defeated if you are at war.
I woke this morning yet again to a body filled with pain, I do still have a vague memory of actually waking feeling great and being able to get out of my bed without having to think about which limb I should move first and which one will be least painful. I am beginning to think I am never going to have….