I was just sitting here eating my breakfast before I started on my blog and sort of found myself watching the TV. Well, it’s there and on, what else can you do while you eat if you don’t want your breakfast inside your keyboard. As I watched I decided to start channel flicking, looking for something to have in the background while I was writing, I hate silence. Oddly I find it makes writing harder, I think it’s because the silence when I’m not hitting the keys is deadening and make each second of thought harder. It was one of those odd things that I wasn’t really conscious of make a choice to stop channel hopping, but there I was watching some program about UFO’s. I realised that yet again I was watching and laughing at myself for the fact I was watching. I do believe life is out there somewhere, maybe or maybe not buzzing our planet, but out there somewhere. Yet I was watching, once again listening to the accounts of people who clearly believe what they saw and I’m not saying they didn’t, see it, but it started me wondering. Why is it that people get TV programs made about their experiences with things that many don’t believe in at all, yet no one ever seems to want to listen to or believe someone who is ill, but can’t get a diagnosis. clearly my mind was split between what I was watching and the fact I was about to start writing, but I guess it’s just another example of how warped this planet really is. Thirty years ago, well I can forgive them for that, medical science has come a long way, so to have it still happening, isn’t really acceptable. It is one of the constant things that I hear on Twitter over and over again, people having to fight to get a diagnosis while they continue to suffer without any help what so ever.
In some ways, it doesn’t really get that much better once you do have a diagnosis. Yes, you have what in many ways is the most important thing, a name to explain what is happening and that is a hugely important thing. That alone is a life changing thing, something that in many ways doctors won’t understand until it happens to them. Once you have that name, if you are very lucky, they can then cure it. If they can’t do that well for some there will be a course of medication that will ease you symptoms and make life bearable. Then you have the ones like me, no cure, no medication to make life normal, just firefighting and pain relief. PRMS doesn’t respond to any of the MS treatments, we are the uncurable and the un-help able. All they can really do is observe and throw steroids at us in mountain high heaps when things go wildly wrong. Until the last few years, that for me was fine, I could cope with reasonable ease what was happening and as long as my pain meds were working well enough, well life was good. As things have been getting worse and worse at a clearly accelerated manner has forced me to start thinking about my future. I guess I haven’t really put that much thought into to it as well like everyone else I don’t really want to know what is ahead of me. I have realised though that I can’t be an ostrich forever, I have to face what lies ahead and I have to start making decisions about how I want my treatment to go. I know I have written before about setting up a DNR or as it is called in Scotland a DNACPR, (Do Not Attempt Cardiopulmonary Resuscitation), but that is for the very end of life, there is a huge gap between now and then.
To date, I have been very clear that I prefer to have a clear mind than to be totally pain-free if they can’t be achieved together. I have to say here that I have been extremely pleased to find that Morphine didn’t have the effects that I was expecting. Recently I know that when I use the booster pills like sweeties then I get vivid dreams, out of personal preference, I have chosen to take more pain and not be totally confused when I wake up. The increased pain that I have been living with has side effects of it’s own, it drains my energy faster than anything else I know. The worse the pain, the more sleep I am needing and that’s cutting into my life. If the pain is really bad, that also cuts into my sleep and the whole thing is taking my routine and tearing it into shreds. My PRMS clearly now has total control over my bowels, it can’t be fixed any more than anything else can be, it’s about managing them and we are working on that. So far with little success, other than I have to say the past three days I haven’t had as much of those terrible intense pains that make me want to cry. I can’t work out why, as I still haven’t been to the loo since I took the laxative eight days ago. I can see now quite clearly that my future isn’t going to work out the way I thought it might. I can see that being bedbound is going to start in phases, not out of the lack of ability to not get up, but because I will be exhausted all the time.
In a funny way, I can feel my body shutting down. Not in a way that I feel I am dying, so don’t worry about that one Adam. What I mean is it is all slowing down, everything is drawing me slowly into doing less and less as in the number of hours of activity. I feel the need to move less if that makes sense. I managed the baking yesterday, but when I was finished, well I felt good mentally, but physically, I had this dead feeling. As though my limbs weren’t there, they had given all they had got. Something I know I mentioned a while ago is happening more and more as well. When I am lying in bed, I lose the location of my limbs, I can’t tell for sure if my legs are crossed or not, or if my hands are flat on the bed or up on their edges. I don’t know where they are, as I can’t feel them. As I said when I wrote about it, it had started to happen when I was up and about, now it’s happening all the time. Right now if I stop typing, my arms will immediately start to vanish and if I stay still they will like when in bed vanish totally. All those nerve signals that fly back and forward, don’t flow at all unless in use. Shut my eyes and my whole body starts shutting down, as though I am going to sleep, not dying. I am drawn more and more to lying in bed for comfort as that dead feeling belongs there, not here at my PC. If I go to bed, well I sleep with no difference than if I had lain down exhausted, my body happily shuts down.
I know I will just have to wait and see, but I am now saying without my arm twisted up behind my back by my illness, that I am willing to take more pain control if needed. I have had enough of fighting against the pain as it achieves nothing any longer. I was scared it would shut my body down and all I would want to do is sleep, that is happening anyway, so why fight it any longer. Fighting to not take the drugs has run its course, my PRMS has taken away the reason to fight it. My routine that has kept things level for a long time is no longer working the way it once did. I need to look at it all again and I need to start thinking in more detail about what the future really will be and how I am going to handle it. The last time I did all this was 8 years ago when I became housebound. Yes, it had a major overhaul when I was made redundant 3 years later, but the core has remained the same. It has been tweaked over and over, cut back and trimmed, but my health has taken now taken over.
Read my blog from 2 years ago today – 3/06/13 – The nurture of illness
I seem to be running increasingly behind time today, it’s 10:30 and this is me just starting to write. I have no idea where this morning has gone, I haven’t done anything different or had any reason to take longer than normal, but here I am dragging myself into my main task of the day. That sounds really bad as though this is a tough task I don’t want to do, nothing could be further from the truth. I am guessing that I am already…..