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…..

Working on the future

Adam is on holiday this week, something I think he has needed for a while as work has been getting to him big style lately. The NHS in Scotland is in a state of flux as they are phasing out all the paper notes and going over to on line notes only, with Adam working in their admin department it is having a knock on effect and problems everywhere. I know we all sort of forget about the work required to keep hospital running and focus on the doctors and nurses, but a lot of people behind the scenes are required, people who generally take a huge amount of flack from those who should know better. Things should get better in January as all the paper notes leave the building and will only be used by the department that Adam works for, for some reason the consultants can’t work on the system as the results coming from the tests they run can’t be scanned onto the system. It will make Adams life easier as all notes will be in just one place and not spread over every hospital in the region. Unfortunately there is one thing that is certain to cause Adam more stress than work and that is the dentist. He broke a tooth on Saturday evening, by the time I was going to bed he was down to the lower state of panic, just stating that ‘he would rather have a Pitbull attached to his ****s than go to the dentist’, luckily that has lowered again and he now has an appointment for tomorrow, so I only have another 20 plus hours of how he feels about going. I guess it’s one of those things that if I didn’t love him, I’d be shouting shut-up, but instead I am smiling and laughing inside because this is just the man I love and just the way he is.

I have become used to being on my own through out the working week, so it is always odd when he does take time off, as instead of the silence, other than the TV, I have nothing but my thought and what I am doing on line to fill my time, I now today also have loads of chatter, normally about nothing. Clearly to those who have read for a while, my mind seems to have little trouble in coming up with and working on all the things that have ever touched my life and where they will go into the future. I have always believed that to live a full life you have to stay mentally active, something that I don’t think most jobs actually do, far too many jobs are just repetitive and or dull. To me it is essential to stretch our minds as much as we possibly can, to be constantly learning new things about everything and anything. I know for me that is why I hate movies, beach holidays, drivel on TV and reading most books, as I now have a brain that loves facts and anything that I can analyse and pull in many different directions, clearly proved by my constant theories. I know that my memory isn’t what it used to be, but I don’t see that as an excuse to just give up. The more I know I am loosing, the more I am trying to replace and to add the new, daily. I suspect that is one of the reasons I don’t feel lonely, lonely to me starts when we have nothing happening in our lives and that doesn’t have to include being physically surrounded by people. If I sat all day in front of the TV, I think loneliness would settle in with not just ease, but with incredible speed. I have always thought that loneliness is an extension of being bored, it doesn’t matter how much you love your TV programs, there is something about sitting on the settee watching TV alone, that just feels wrong and actually screams inside you that you are alone. To be honest that was why when I was married to my first husband who was in the Navy, that I spent my evenings always knitting, crocheting, doing embroideries or reading a book, while I watched TV, often managing book, TV plus one handy craft, as being busy on another level, replaced the chatter that naturally is needed to make TV complete. You don’t notice you are alone as long as you have things to fill your mind and the more you have to do.

I don’t believe that it ends at loneliness either, the next thing it will hit is our pain levels and awareness of all the things that are wrong with us, just as I allow myself to do nightly when I go to bed, but if you become centred on it as there is nothing to distract or occupy yourself with, those small things just grow. I know that one without having to prove it to myself, as every time I stop for a short time, I start to feel things that had to have been there all along, I was just too busy to notice them. So now we are feeling lonely, compounded by the fact we believe our health is getting worse and the pain is increasing, it is no surprise that the next logical step is depression.

I have mentioned several times in the past that I fear becoming bed bound more than anything else, loneliness is the biggest part of that. I know there is no reason why I couldn’t have a PC through in the bedroom and there is no reason why I couldn’t do almost everything that I do now, as long as I have the energy to, but there is a physiological barrier, one that is hard to get past. I was brought up to never just lie in bed, the second I was awake, was the second that I had to be up and doing something. I wasn’t even allowed to read a book in bed and for the same reason there has never been a TV in the bedroom either. Bed is for sleeping, not a place to live, only those past living, or so ill they aren’t capable of sitting up should ever be there. The whole idea of me become bed bound, makes me go cold and I cry inside. Logic says that I am being stupid, that there is no reason why I couldn’t have a TV and a PC through there, there is no logical reason why life couldn’t continue, maybe not as it is today, but I could still have what I count as a life. My brain wouldn’t change just because I would be horizontal rather than vertical, I could still learn, still take part in this wonderful on line world, I might have to pull back on what I do, but why would things really change that much. But that’s logic, what I feel isn’t. What I feel is that that would be the end of me, me as a person, as people don’t live like that, they die. How could I possibly do anything, bed is this island, a sanctuary where we go to be cut off from everything, to sleep and to leave the real world behind, it is our place where we are protected from life, letting life in, just isn’t allowed. No matter how much I have thought about it, analysed it and pulled it in every direction possible, I can’t get my brain to accept it, but I don’t want to let go of life that easily, somehow between now and then, I have to work on this one, to somehow settle myself to the inevitable and to make it work for me.

Although others are, I am not surprised at all that I have managed to accept and live my life without depression or loneliness to this point. I have managed, as I could see no reason not to, it’s as simple as that, the practicals were simple, the physiological was easy and life had to go on so I went with it, but there is that one thing that lies ahead, that I can see so many reason not to. Not because of the practicalities, all of them can be managed, but because life has set up through learning and teaching, a row of barriers that once were a virtue to my life.

Read my blog from 2 years ago today – 15/12/12 – Understanding people

I have zero energy today so for that reason I am cutting back a little on all my normal daily activities on line, not stopping just cutting. I don’t know if it is this stupid cold or if it is my MS but I suspect it is both. MS is this horrid illness that sits there waiting for any excuse to……