I slept for two and half hours yesterday afternoon. Normally I will sleep about an hour less than that and it was clearly the alarm that woke me. I had gone to bed without finishing everything I had to do. I just didn’t have either the energy left or the ability to take the pain any longer. By the time I gave up, I don’t think that there was a single thing from my hips to my mouth that didn’t hurt. Even my arms were screaming at me by that point and I had had all that I could bear. I knew that I was going to sleep without any issues. I was totally exhausted and I hadn’t even made it through the first half of the day. Pain has to be one of the most draining things there is and when you can’t find relief, well the only good fact there is, is that sleep will eventually take over.
I had been pinning some hope on the fact that the pain lowest in my stomach meant there was a chance that I might just actually go to the loo and break some of the pressure. There was no luck there either. Yes, I did go, in fact, I went twice, but it didn’t produce any relief what so ever. I had in the morning been putting down the fact I felt so ill, to the pressure, pain and tiredness. By the late afternoon, I had begun to really wonder. Out of the blue, my temperature was spiking, sudden spells of feeling like I was totally frozen, but sweating at the same time. Yet again my skin was feeling like it was on fire but in the way it does on a cold winters day. After two days of not feeling well and suddenly I was showing something beyond just my normal nutty body. There is one thing that not even my body can manage and that it so truly fake a high temperature. Admittedly, it can fake aspects of it, but to get that bitter coldness whilst sweating is something I’ve only ever had when something else is at work. Whatever is wrong with me, it is centred on the one part of me that spends its entire time producing pain and most days absolutely nothing else.
I have thought many times that I have found the worst part of life with PRMS, but this attack on my internal processes, of processing food and breathing, really is the list, leader. No matter how bad, anyone can live with spasms, I’ve been doing on and off for most of my life. When my MS changed and I was eventually diagnosed with PRMS, I thought then I knew what living with pain was. That assessment has gone up and up every year. Just over two years ago, this new phase began. I don’t think that since then I have had a single day without either or both diaphragm and stomach pain. Like everyone, I thought I knew how much pain a stomach can produce, I was wrong. It too has gone up and up but far faster than any other pain that I live with. Even the pain I was in from January through to June didn’t manage the highs of the last 24 hours. So OK, I am 90% sure that something is aggravating it, but that doesn’t change anything, it just means I have another way of feeling rotten. Through out the evening it just kept getting worse. Sitting was something I couldn’t manage to do in one position for even one full minute and the pain had made it all the way to my feet. Just placing them on the floor was wrong and there was no way that my legs muscles would stretch so I could put them up on the stool. All the sort of things I had expected when I was diagnosed, pain everywhere in muscles you knowingly use. I never once thought years ago about the possibility of my PRMS being involved in anything internal. I know now that was naive, but if no one gives you the heads up, you just don’t imagine these things. Yes, I knew that it meant spasm, nerve pain, nerve death and all the other joys, but I never put those first three together to make something that could stop you processing food and breathing. Funnily enough they are rather vital and unavoidable things we have to do. How do you deal with a disease that is clearly out to kill you? Yet no one can see it unless you are screaming. Medication can’t do more than slightly calm it and no one has the slightest idea of how to cure it.
Everything around my body today is still reacting to whatever the trigger was. Yesterday afternoon I had to stop my work here at the PC, not just because of the pain in my stomach, but due to my left arm. It had got to the point that just moving one finger was beyond it. There was a tension within it that I know all too well. It is almost as though it has its own energy supply and although the rest of me was still running, my left arm was drained. My hand is still filled with mad sensations, from slow speed tingling to cramps, all centred on the middle finger out to my thumb. If I let it rest for too long, it starts to go what I can only call painfully numb. Nerves are like that, it isn’t until you have an illness of them that you discover their ability to produce two totally opposite sensations at the same time. Personally, I would prefer it if someone could just switch off all their ability to produce any sensation of any sort what so ever. I know that would produce other problems. Ones I probably couldn’t even imagine, but it would be nice, even for a short while.
Today isn’t going to be a good day. Somehow knowing that isn’t quite as daunting as it was yesterday. There isn’t a single symptom of yesterday that isn’t with me today, but I have a far more accepting mental attitude to it. I have heard so much rubbish over the years about fighting illness and it is totally rubbish. It might seem to work when you are talking about a minor illness. But you can’t spend every single day of your life at war with yourself. I don’t have cancer or a virus, something you can do those nice neat systems found in self-help books on. There isn’t an enemy to visualise, other than the one I see in the mirror. You can’t fight your own autoimmune system, you have to learn to work with it and ultimately let it do whatever it will. I was lucky as I learned that one early. Spend your day fighting and pushing yourself to do all that you think you should, achieves nothing. You might have a lovely clean house, but you will have a body in bits and more pain than you know what to do with, and that will last for days, not hours. I pushed myself yesterday beyond the point I should have. I should have been in bed long before 1 pm and I shouldn’t have set the alarm. I did and I paid for it all yesterday evening with pain that even my Morphine boosters didn’t touch. It’s no fun lying in bed wondering how much more you can take without calling an ambulance. Probably in reality a question that I am a long way from being able to answer. As no matter how many times I have thought it couldn’t get worse and I can’t take any more, both have actually happened.
Today I am accepting, I am ready for whatever it wants to throw at me and hoping that the truth is it throws very little. Life stopped being fair a long time ago and I am not the sort of person who is going to complain too loudly, as that is another thing that gets you know where. Like every other day, I will ready my smile for when it is needed and I will move forwards slowly dodging when possible all the bullets I know that are waiting for me and treating all the ones that hit home.
Please read my blog from 2 years ago – 19/08/2013 – Bad day, bad feelings
I seem to have inherited a sieve overnight in place of what I already jokingly called a brain, even writing is taking longer as if I dont type quickly I lose not just the end, I completely lose all direction. So this could be an interesting post for me today if not for you, mind you it could turn out more interesting, as who knows what will come next, or how much piecing together……
PAMELA,YOU ARE THE STRONGEST,YET GIVING PERSON ALIVE..IF I HAD JUST HALF OF YOUR STRENGTH,I WOULD NOT BE IN TEARS NOW.THANK YOU.
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