Tiredness and nausea got the better of me last night and I headed to bed early. I wasn’t long after 8pm, just long enough for my meds to be kicking in and I simply couldn’t face any more of the day. Adam had some studying to do before college this morning, so I didn’t have to go through that guilt kick that echos around me when I have to give in. Making my decision to do what is right for me, doesn’t mean I won’t feel that it’s wrong, but it did make it oddly easier to take the decision without hanging around for ages swithering about it. I had actually been feeling sick for most of the afternoon and neither my nap nor my anti sickness meds seemed to be touching it, usually they work really well. By the time I was due to take my night-time drugs, I once more found myself sat in the kitchen looking at them and wondering if I was going to keep them down. There is nothing worse than that feeling and it’s one you don’t ever find yourself having to fight until you are really ill. In the past feeling sick meant you just didn’t eat or drink anything when it is at it’s worst, these days I don’t have a choice, I needed and had to take them. Lying down was a blessing and pure relief, when the world is swimming, horizontal is the only position that feels safe and sleep took over quickly. It didn’t last that long though as with less than an hours sleep I found myself awake and in the worst pain I have had in the past couple of weeks in my abdomen.
There didn’t seem to be a single part, top, bottom or sides that weren’t screaming at me and it was totally out of the blue. I just said a couple of days ago that everything had been surprisingly peaceful, but not last night. I lay there for a few minutes hoping that it would just pass, that it was just a trapped air that just needed to move, but it didn’t. The pain was so intense that it was causing my nervous system to go into overdrive. Odd sensation from the insides of my thighs being frozen while my feet were on fire, to pins and needles in my hands and the skin sliding off my face were all there, but when my pet hate, that feels like bubbles just under my skin running all over the place started, I decided it was time to put a stop to it. I knew that there was no other choice than to take a booster pill as it wasn’t going to settle by itself and if I wanted any more sleep. I don’t get what it is about lying down that amplifies the pain, but the second I was sat up on the edge of the bed to take my tablet, the seed of the idea that I might need outside help vanished. Yes, the pain was still there, but it was bearable when sat up, which isn’t a word I wouldn’t have attached to it seconds before. I always thought that it was a psychological thing, as in you have nothing else to think about once you are lying down in the dark. The pain isn’t any worse there, it’s just that you have nothing else to distract you, clearly that was rubbish. Nothing had changed other than my position, if something major was going on, I would have felt no change, position doesn’t change facts.
This morning I am in exactly the same position, even though I actually slept well once the booster took over. There is this immense pressure that I know without trying if I were to lie down right now, would change straight into pain. It’s knowledge like that the total screws with your brain, because it doesn’t matter how tired I might get, I would in the “normal” world be faced with a set of choices, stay awake until I can’t stay awake anymore, try it and see which means putting myself possibly in pain, or taking a booster half an hour before. The first doesn’t work at all, do that and I will send my PRMS into free fall and I will suffer for it for days. Clearly the final one doesn’t really work when you can be fine one minute and dead on your feet the next, planning and chronic illness don’t go together, ever. So I am left with the suck it and see approach, but that causes problems as well, as the booster takes time to work. This is just one of those wonderful loose, loose situations that our health has lined up waiting for us, but it’s also a great example of how you can be left feeling that you just can’t win. There are times when it feels as though there will never be one simple act that you can just do, without having to weigh up the possibilities of what the outcome will be. I don’t thnk there is a single thing in my life any longer that I unlike the old me, although I might think I have choices, I actually don’t.
I can only guess, but I think that if I were to look back over the course of my illness as the real choices in my life have vanished at the same rate as my health has become worse. I never thought that there would be a day when I would find myself looking into my own kitchen cupboards and have to dismiss nearly 90% of what is in there as impossible for me to eat for an array of reasons. I couldn’t have even guessed back then that I would be facing a life without choice, so OK right now I do have some choice, but they are getting more and more limited. For years, I have been guarding the choices that are freely mine, like whether I smoke or not, what colour my hair is, silly things but things that are my choice. Living inside a tight routine, one that was the only way of holding my PRMS level, removes much of the choice that most people have, but it was worth it. From talking to others who also have MS and some with Fibro, they too have found that routine has been almost magical in the way that it lets us remain reasonably well, if not healthy.
To date, I haven’t come across one person who has said that routine has failed them as time has progressed. I said a couple of days ago that I was going to think through the whole process as it is so clearly not working any longer. I haven’t sorted it all out yet, but I don’t think that throwing the routine out will actually help, but clearly working reactively to each day is equally a bad thing. Counter to what logic would say, nothing is really simple when you don’t have a choice.
Read my blog from 2 years ago today – 4/06/13 – Is it age? Is it health? Or is it just life?
I wasn’t too sure that I was going to write about this morning, in the last few days things have followed as always with what is wrong with me and what is happening in my thoughts because of it. I was thinking through some possible starting point, I always work in the same way with just a sentence and then it flows on its own. But I was having trouble to find just…..
IF I SAID, I UNDERSTAND;YOU WOULDN’T BELIEVE ME.IF I SAID I WAS SORRY; YOU WOULD SAY THAT IT’S NOT MY FAULT.YOU ARE LOSING YOURSELF. DO WHAT MAKES YOU AS COMFORTABLE AS YOU CAN;EVEN THOUGH COMFORT IS SOMETHING I THINK YOU HAVE NOT FOUND IN AWHILE. THIS MAY SEEM SELFISH,BUT .I SOUND LIKE A TERRIBLE PERSON BUT I’M TRYING TO NOT FEEL SO ALONE. SO THANK YOU PAMELA…WITH LOVE AND PRAYERS………..NEVI
I wrote several essays about various iterations of courage; in another time and in another blog – long since deleted. Most of my observations were from my direct experiences of men in extreme situations, under my command, under fire, injured, dying. Nearly all were related to immediate, intense and specific military experiences.
By contrast, your resilience, humour and complete lack of any maudlin sentiment while enduring a long term and never-ending painful existence is totally different. A lifetime of suffering.
May I say, you are a living example of true courage.
I salute you.