A personal sanctury

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…..

Home adaption

I managed to get the details for Teressa yesterday and the streaming of the wedding isn’t until 2:15 pm so with my OT appointment being set for 10:15, 4 hours before, it should be fine for them being on the same day. I will be totally wiped out by it I am sure but I really don’t want to wait another 11 months, if they put me back to the end of the queue. John, Teressa’s fiance will arrive in the UK on Friday morning, on Saturday they are hiring a car to drive up to Scotland to stay with her step brother and will be coming here to see us before the wedding. I saw the weather last night and I am a little worried that their idea of driving from London to Glasgow may not be the best but it is still a week away and things change. I have to say this as to many it will sound really strange, but with her in her 30’s and despite being divorced, this will be the first of her boyfriends I will have actually met. With her jet setting around the world from aged 11 it isn’t so surprising. Everything seems so rushed now, but I suppose if you think that Government department move quickly, and plan on their speed, then things get rushed after they actually do act. But it is all systems set to go now and I just hope all their plans workout as they are clearly hoping.

I did some more thinking last night about the OT and what help I want from them, one I am definitely going to mention is my bed, yesterday afternoon I again pulled the muscles in my forearm, I think it happens because of the way I have to have my hand twisted to get hold of the toppers, add in the pulling of my weight, and there is a recipe for things going wrong. I hadn’t really spoken to Adam about this all until last night, at first I don’t think he realised all the little bits and pieces, like different cushions for at my PC and for the settee. At the minute he moves them from one place to another as the larger cushion, that came from my wheelchair originally, is really heavy. What I am using just now isn’t right for either place really, and were a fill in set up, I though for a couple of months. What I have to have though, is cushions that won’t let the sores come back again, they weren’t any fun and I don’t want a repeat that is for sure. I accepted a long time ago, before I was housebound that the rest of my life would contain pain in my backside and legs, but when you know there are cushions out there that would relieve it, although probably not remove, it doesn’t seem fair that you have to live without them.

I did one of my walks round the house again, checking where help in the form of grab bars might help and once again hit the problems that where I want them, I just can’t have them. I know I could do with on in the hall, half way from the living room to everywhere, but it would have to go right above the only heater we have in the entire flat. When it is on at full as it is right now, a grab rail would be unusable as no one would be able to hold on to it. In the entire bathroom there is only one place a grab rail could be fitted and that is in the shower, the long wall between the door and the toilet there is nowhere at all until I reach the loo, where I don’t need one. When I designed the bathroom I had a raised toilet fitted which means that I have no problems there at all. The room I often have the most problems in is actually the kitchen and the problem is caused by it’s size. If I walked round the outer edge along the route the counters take, then fine, but I am like everyone else on the planet, I want to cross the space from one side to another. Once launched I keep going, but frequently have a wobble part of the way across, my fault, I know. Our home is such that I just don’t see how much more help can be built into it, it was never built for a disabled person and is totally un-wheelchair friendly as well. Once I become unable to walk, well I will be bedbound just as those would lived here when it was built would have been, but those are the problems of living in a wonderful house, rather than a modern house.

When the OT does get here I will ask her what she thinks can be done to help me, but I will warn her first of one thing, moving any of my crystal is not an option, after that, I will listen to what she has to say. If she can sort out the two main problems I will be a lot happier, and as to the rest well apart from rebuilding my entire house, which they won’t, I actually don’t see what they can do for me. Maybe I will be pleasantly surprised and my negative feelings are there simply because I have been let down so many times by people who hold out a branch of hope, just to pull it away again, especially OT’s.