I have woke up in pain this morning, a pain so bad that I hardly knew how to walk when I first stood up, yet I slept all night. I really don’t understand pain, you would think that by now I would be an expert yet it still surprises and confuses me. Once again, the pain is all around my mid region, but worst over my kidneys and yet again going for a pee when I woke was almost a waste of time. I am sure that just like as has happened in the past, sometime in the next hour I will go again and pee for Scotland. I don’t get it at all, but when you are being sliced in two by razor wire, getting anything is pretty hard. I am just hoping that when I take my meds in the fifteen minutes that they will bring with them an improvement. If there is one thing I wish I understood, it has to be how on earth did I sleep through this pain for however many hours it took to get this bad? I have had lesser pains that have found me up and sitting in the kitchen praying for improvement so that I could find sleep again, yet something that I would put in the hell brackets, I sleep through? I may not understand it, but I am so glad that I do. Sometimes I do find myself asking questions that I don’t want anyone to investigate in any way, as I know that what I am questioning is a complete blessing. Unless, of course, they can tell me how to sleep through the lesser pains as well.
Adam had taken today off work as he has rather a backlog of things that he needs to complete for his college course and just like the rest of his life, he has left it all to the last minute. Actually, I’m not being fair on him saying that as he has improved a huge amount over this year. Those few weeks that we had at the start of this year when we talked over a million things and sorted out many events of the past that hadn’t been dealt with, have really made a huge difference to him in more ways than one. I find myself even now doing what I know is the wrong thing, not telling him at the time what is happening to me. It hard though to admit that you’re not dealing totally with your own silly body. I find little point in worrying him, rather than letting him read it after the event when he knows and can see that I am still alive and still working my way through life. Like right now, what would be the point in telling him that the pain is so bad that I just want to disappear back into my bed. He would say “go then”, and then spend the next hour worrying that something major has gone wrong. I guess we balance each other really, I worry about little and he worries about everything.
I don’t know why or how my body has developed this ability to shut out severe pain by sleeping, but it knows it too. Whenever my pain levels are elevated, my instant reaction is to want to go to bed. That message screams its way through my head almost as loudly as the pain does. It is one of the reasons that fear becoming bedbound, as either I will just sleep forever or worse still, will the magic of bed, lose its power, leaving me in pain that I can’t escape. It’s odd how we all put such high values on what after all is just another piece of furniture. From childhood on, our beds are our safe place our sanctuary and once there we are protected from all evil, even the monsters underneath them. As my health slowly goes, our bed has become somewhere to escape to, which is probably part of the reason that I refuse to have a TV in the bedroom. Bed is the totally wrong place to have anything that will distract you from the reason of being there. Which is yet another reason that I hate the idea of being bedbound. There is no way that I will be able to stand not being able to have the TV, if I am stuck there with nowhere else to go, yet the idea of that box crossing the threshold of my sanctuary, still seems so wrong, even in that context.
There is one odd thing that I have noticed recently, on the morning that I wake in pain like this but haven’t been up during the night, I always seem to wake with a headache and my limbs a stiff. I really do get the impression that they are nights when I honestly don’t move an inch, not even my legs which according to Adam have always been active. Sleeping on my back doesn’t seem to have changed that, in fact, it is worse as my legs now manage to totally escape the bed so that my feet are on the floor. Restless leg syndrome is well known and can happen to anyone, even without any of the conditions that I have. Those of us with MS are more likely to have than others and, of course, that means my body just had to join in. Their night time wondering is bad enough, but they do seem to have the ability to move by themselves while awake as well and the weird sensations are something else. Years ago I thought it was part of my PRMS and it might still be, but when I read up about it, I couldn’t believe that for once what I read actually matched. Odd sensations like my skin is actually crawling, or that there is liquid, i.e. blood running down the outside of them, were universal. To be fair though, this is a condition that I have, but Adam suffers the worst from, his sleep is often disturbed by it while I sleep soundly. My torso and head may not be moving at all but my legs and arms are all over the place and yes it does affect your arms as well.
Sleep for me isn’t always a peaceful process, but activities or not, it is an escape. Last night I believe it was a deeper escape as there was little evidence that I was on the move, even the duvet that I tuck around my feet when I go to sleep was still tucked tightly. Yet here I am three hours after waking and still in the pain, although, at a lower level at last, that was there when I woke. My headache has gone, either because I am now distracted or whatever caused it is fixed, as is the pain I had in my neck and left shoulder. It appears that not a single second of my life isn’t changed in some way by this illness that I live with. Awake or asleep, it is always making it mark and makes sure I am aware of it eventually, if not at the time.
Read my blog from 2 years ago today – 28/05/13 – Doctors and possibilities
The phone call has been made, so there is no going back now, I am expecting the Doctor here sometime after 1:30pm, unless of course he phones me instead. I still would rather see him as the problems are growing and there has been for me no resolution to the all the tests that found nothing. There may have been nothing inside my gut, but something still…..
Two Rooms Plus Utilities 
To most of us, serious, progressively degenerative conditions are predominantly a mystery. To some of us, who have known people living with those conditions or who ourselves have experienced (we think) something similar, they can be just as much a mystery.
The courage of so many who have to live a different life from that they’ve known or from that of their family, their friends, their contemporaries, is startlingly amazing to most of us. These human beings become more – they become role models, even paragons, exceptions to the herd and possessors of outstanding fortitude and equanimity. Yet, after a moment or two of brief admiration, their situation is classified away as understood – just what is – something that happens to some and not others – unfortunate for those who experience it but, after all, what can we do? We know people suffer – we ignore the plight of the 22000 children who die of preventable malnutrition *every day* of each year; we ignore the plight of the 7000 women who die in childbirth because of lack of simple sanitary facilities; we ignore the poverty and death of adults and children in refugee camps for they are too far away to be relevant to us and anyway – it must be their own fault.
We fail to take notice of the message that the fact of people being in those situations tells us — that we are fortunate – that it could be us – that we are all connected as part of the human race and, more – connected to nature and the planet – to all forms of life as creatures of Earth. We just move on with our lives, sometimes putting 20c or even a $ into a collection box, buying a badge or pledging some ongoing pittance that we could spare many times over in order to salve our consciences and ensure that we can consider ourselves good guys.
The fact is though, that those people don’t go away. They live and deal with their conditions. They not only survive and care for others in the face of extreme difficulty – what most of us would consider impossibilty, but they are inventive, creative, exuberant – they laugh (and cry) – they entertain – they offer consolation to others and, perhaps most of all, they rarely judget. They live. They are examples of human will that transcends the mundane or self-centred and frequently selfish and corrupt raw ambition of corporate leaders, business high-flyers, the famous, rich and powerful – our political leaders – our Kings, Queens and Presidents.
They have no intention of doing so – quite the contrary – but they put most of us to shame with their generosity, their sincerity, their ability to love and great the day, no matter the pain or difficulty. They rarely, if ever, look for kudos for that is not what they’re about. They are just living and sharing their lives – but such a gift that is to the rest of us that they deserve kudos.
I take my hat off to Pamela Sutherland and those in similar situations, whether with the same or an equally transforming condition. I admire her (and their) ability to contribute and, most of all, to *share* the human experience. I find in it (though I would wish it on no-one) some balance to offset the tales of horror, starvation, mutilation, bashing, killing and such that mars each day. I find it offers some relief from the banality of a tv news service that in the space of two or three minutes can change topic from the deaths of 200 refugees at sea to the birth of a baby to a famous mother or the joys of the local show.
if you listen to the spaces in Pamela’s work – as much as to the words that surround them – you will learn.
Thanks Pamela.
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