I found myself lying in bed yesterday, not sleeping just resting. I couldn’t sleep because my brain had suddenly decided to do some investigations of its own, it was running through things in the past, things that happened so long ago and with people I don’t even know now, that not one of them could be changed in any way at all. I often find myself doing this, reliving conversations, situations and things that at the time I worried about after and seem to still be worrying about now. The worst thing about doing this is that once it starts, you just can’t stop it, it runs and runs until eventually it just fades, I don’t understand how or why it happens and I am sure that it happens to everyone, well anyone with a conscience, or a desire for the truth. It has to be one of the worst things that our minds do to us, making us relive until it almost drives us mad, as I have relived and relived the same things for years and not one reliving has made the slightest difference. Just to make it that bit harder, it always happens when all you want to do is sleep, at least yesterday it was only my afternoon nap that vanished.
Both yesterday and today I am being plagued by pains in my stomach, I know exactly what it is, but as always there is little I can really do about it until tonight when once again I have to take laxatives. That may sound a simple enough thing to do, but the problem is that I just forget, or when I do remember I have to get around Adam’s involvement in my bedtime routine, as I was stupidly embarrassed to take them when he was around. I know it is a stupid thing to be embarrassed about, but once you have learned to feel that way, it is almost impossible to break it, just as the last thing I would ever be comfortable with would be going to the loo with someone else there. I even moved the tablet strip into the bedroom a couple of months ago, thinking that was the answer, I could take my tablets once I had said goodnight and I was on my own, so now my brain just ignores the fact that I need them and my body only reminds me at the wrong time of day. I have now totally accepted that whatever my MS has done, I am never again going to have a normal bowel, I am either constipated for days on end, or I can’t hold onto what is there at all, either way I land up embarrassed and in pain. I don’t think there is a single bodily function that just works now, everything from breathing onwards has been effected and everything has been changed by it.
I suspect that anyone who doesn’t live with this illness, even second hand, has no idea of just how much of a person it can destroy. I had no understanding at all, I had heard of MS, even read about it when I was grasping for the reason I was ill, but not once did I read just how extensive it could really be. If you spend time online searching, I don’t think there is a single symptom that I have that isn’t linked in somewhere, but not once did I find them all on one site, but all are attributed to MS. I know I have other conditions, but I now believe that some were listed by doctors who I think like me were looking for answers and missed the truth, it is only time that has shown them to be what they are, just another part of this condition. So right now I am sat here with lower and middle stomach pain, a diaphragm that is constantly tight and uncomfortable, pain on both sides, one from the gallstones but the other, well your guess is as good as mine, but that pain and tightness make it hard to breathe any other way than shallowly. From the line of my breast down to my hips, pain that I never thought could be caused and I didn’t expect or look out for, as I didn’t know they could be part of MS.
Once I got that diagnosis I thought I knew what was ahead of me, I thought I had read everything, heard everything and was ready for anything. When you live like this and something unexpected appears, rather than putting it where it belongs, you fall into flat panic, in the belief that there is yet something else wrong, something new and this time because you know your body is already failing, you convince yourself for a while at least that it has to be something far worse. I have searched and searched for that definitive list, that one place that lists from head to toe, all the things that MS has ever been known to do, it’s not there. I can see why some might think that making a list like that might scare many people, that it might just be too much for many to cope with, but I firmly believe that if you know what might happen, then you don’t panic when it does. There is nothing worse than spending most of your life checking and checking again, could it, should it, would it, does it, might it or is it, just knowing would be really nice. There is nothing that those questions don’t apply to, even that itch in the middle of my back that appeared a couple of weeks ago and is still there, has those questions running around my head every time I try to contort my stiffened body to deal with it. There appears to be a streak of madness that grows as you get sicker and sicker, you just want answers and those answers aren’t there, just clues and hints, never any real answers.
Please read my blog from 2 years ago today – 22/06/12 – Morphine control
If anyone out there is thinking about changing from Oxycontin to MST, don’t do it! Sorry but I am not myself today, I’m not sure who I am but it’s not me. Last night I went for the lower dose of 50 but the pain was too much to cope with so back to the 60 after 2 hours and 60 was the dose first thing this morning. It may sound a little nuts to you if you are not living your life on Morphine, but I am really……