I didn’t see it

I awoke this morning with the oddest feeling. It’s not the first time I have felt it, and it never stops being unsettling whenever it appears. I woke at just after 6 am, thinking that I must need to go to the loo, as I often wake around then for that reason. Before I even sat up, I knew something was wrong and I decided to lie there for a moment while I tried to work out how I was going to move. The best description I can put to it is to say, that I felt as though I was going to pass out. I was sort of giddy and light headed with a really strong feeling that unconsciousness was a second away. It isn’t just a sensation that I would say was just in my head, it affects my entire body. If your limbs can feel dizzy, well that is how I would describe them. Light, tingly and unsettled in any position that I place them. They are heavy and move in jolts, and once motionless, the feeling of movement continues. I have been hit by that feeling frequently, but I have never felt it start when I was lying in bed.

As I said, I thought that I had to head for the loo, so I had to get up. That movement, to sitting on the edge of the bed, caused my head to swirl in a way that left me nauseous, and with a desire to collapse, instantly. It was actually a very desirable feeling, I know that sounds nuts, but I truly thought that if I just did, I would feel better. Once I was on the move, I became aware of this racket going on in my head. I would describe it as a mechanical whirring, it wasn’t tinnitus, I’ve lived with that for years, that is in your ears, this was in my head. I made it to the loo in my wheelchair and quite honestly, I don’t think I have ever been so grateful for having it. When I got there, my bladder refused to empty. That too happens quite often, but as I was feeling so bad, there was no way I could manage a catheter. All I could do was return to bed and hope for the best. Another sign of how bad I felt, I didn’t even consider have a quite smoke in the kitchen.

Before I knew it, the alarm was telling me it was 8:30, and time to get up. I don’t remember going to sleep, getting into bed yes, but going to sleep no. Two and a half hours further sleep had changed little. It wasn’t quite so intense, but it wasn’t better. I sat here for about half an hour, answering my overnight tweets, then went for breakfast and to go through my morning meds. By the time that was all done, I actually felt a lot better, but it didn’t last. By 11 am, I was once again not feeling myself. I have lost count now how many times I have gone through something like this. I would have called today exceptional if last week hadn’t supplied me with a far worse example, I just didn’t write about. I often find my body being taken over and my mind filled with intense noise, confusion and a desire to pass out. It doesn’t just happen only at night, but sometimes, it just appears out of the blue during the day, without any prior episodes that day. I know that I have mentioned it a few times in the past, and I also know that if Adam had seen me this morning, he would have been worried, just as he has been in the past, so clearly I equally look wrong.

This is where I award myself, the prize of “idiot of the year award”. I can’t believe just how stupid I have been, especially as I now know that I have at my fingertips, the instant cure, and I could have saved myself numerous hours of hell. I honestly never once put two and two together, and worked out that the root of my problem is my COPD. Whether it is my PRMS causing spasms I’m not overly aware of or just my Emphysema, I don’t know, and quite honestly it doesn’t matter. What matters is my oxygen levels, yes it is that simple, lack of oxygen. The cure, well take your pick, I have a nebulizer and I have inhalers, all of which would have helped me. Not once have I ever thought of checking my levels or to use those meds as a way of curing faintness, hence the “idiot of the year award”. I do have one other excuse, other than stupidity, my PRMS does cause both dizziness and nausea, the very symptoms I have been putting the blame on.

I guess that it is because I have had Asthma all my life, that I didn’t think of it. To me, you only use your inhalers, when you can’t get your breath when you are literally gasping for air. I haven’t been gasping for air, that only happens when my chest closes down on me and getting air is painful and it hasn’t been. In fact, I now always breath on the shallow side because of my diaphragm being tight all the time. I have been keeping my oxygen monitor in the living room, so it hasn’t been at hand at night, nor have I thought about using it when I feel like this during the day. It wasn’t until it came back at me this morning that I first thought of checking it and there it was oxygen down at 88% dipping between that and 84%. I don’t know what made me think of it, but I went and used my nebulizer, my normal of 91% returned. I have been sticking to using it twice a day as a stabilising medication. I had been told that I could use it as often as I needed it on top, but again, I’ve only been doing so when gasping.

In fact, if there is a stronger award I could think of, I would award it to myself. I just can’t believe that I have been living like this, when if I had a brain that engaged with facts, I didn’t need to. Somewhere in my muddled head, I quite simply haven’t been thinking straight about any of it. From here on in, I don’t care what time of day or night it is, I will be using my nebulizer, rather than wishing I could just pass out.


Please read my blog from 2 years ago today – 13/04/2014 – There is no place like home

Sundays are always here always start the same, quiet TV programs and snoring, strangely, I wouldn’t have them any other way. There are so many things that start out annoying us and land up being those strange little comfort zones, the places that if for some reason they vanished, would leave us feeling that bit poorer, that bit less at ease with life. Life somehow needs those constants, those things that happen without any effort or intention, but if they changed or ended, there would be an emptiness that nothing else could replace. I might complain at time when…….


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….