Today I would like two new legs and a new pelvic please! My request for new parts to my body or even an entire new one has remained unfulfilled now for many many years, but I really would like today’s one right NOW! The pain has now been building hour on hour and I am finding no relief other than through my Morphine, well that’s what it’s for isn’t it? The worst point is standing up, those tiny sections of each second as I force myself through the pain and into an upright position is hellish. I actually found myself standing a little while ago with my hips tilting me forward and considering walking in that position, if it were possible. I stood there considering the possibility, but I had to take into account the step down from my platform at the back of the room, I realised it was probably dangerous to try and go down that step without straightening up, than offset in the pain I would save myself by not just pushing through to an upright position. From the second I woke up this morning I know that it was going to be another bad day, the alarm was screaming at my and I was screaming inside as I tried to just make the twist in my body to reach it. I was instantly aware of muscles locking down on me and spasms cascading through my lower back and into my thighs. Before my feet made it to the floor I was also aware of the small muscles across the top of my foot locking and suddenly my entire foot was cramped and in a position that standing wasn’t going to be easy.
Some mornings are like that, the elevator has made a huge difference as before I had it, well every morning was a battle as I forced muscles to lift me, something that was all to often seen as a signal to lock themselves tightly and refuse to do what was required of them. That point where you are waking from a long sleep where you don’t really move at all is regardless of illness or not, it’s the perfect signal for relaxed muscles to complain about everything, add into that the simple fact that that point in the day there is almost no painkillers left in your system. When I first started having spasm that were focused like this that I would spend hours just trying to find a way of relieving them or what might have caused it, but the answer was always the same, no reason, no relief. The one thing I have learned is that when spasm start to cascade the best thing to do is to sit or lie down and just let them pass. I spent most of yesterday on the increased dose of morphine, despite being determined not to take them I didn’t really have any choice. I guess I will always fight not to take anything that I can manage without, regardless how difficult that often is. I know that many might find that really stupid but stupid or not, there is just something inside me that makes me fight it, so fight it I will.
I seem to be very hazy today, not quite as bad as what many call an MS fog, but enough to keep me drifting here and there and very slowly to what I was meant to be doing. This soft fog appeared at the same time as the painful spasms, so I am guessing that it is all part of the same thing. Symptoms aren’t usually focused to just one part of your body so it wouldn’t be a surprise in any way at all, but it is very annoying as when I can’t concentrate on one thing, I just seem to loose time, it vanishes without any trace other than the fact I know that once again I am behind in my day. Rereading and rereading everything that I have written eats time as by the time I have checked what I have written, I have once again forgotten what I want to say next. It like having your mind and your life stolen, right in front of you and you can do nothing about it. At this point I have already used up 5 hours of my day, most of it right here on this post, nearly 3 hours to do what? I guess that it is going to be a day that leaves me with no feeling of actually achieving anything, when your brain goes numb and your body is screaming at you in pain, well it is like you are living inside several coils of barbed wire, you can see the gaps, the point where you could hold it out of the way, but as you reach for it, you forget what you are doing or even where that gap was. Your entire day is spent doing the same thing over and over again, but you can’t win, all you can do is keep trying as maybe, just maybe this time you will manage and you will find that relief.
I did manage to speak to the doctor today, yes I know I was meant to be calling him several days ago but well, it just never happened. Every evening I have found myself sitting on the settee, bent forward pressing my arms into my lower stomach just were my bladder is, screaming at myself for being so stupid and for not making that call. I am not sure just how long it is since it started to sting and causes pain inside me, I guess a couple of weeks but when you don’t remember to pick up that phone in those few minutes that you have when surgery is over, but the doctor is still in the building, well your stuck in pain for another 24 hours. There has to be a better system that my doctors could work with, but they seem to insist in living in this pocket of time before the PC was invented. I have MS, people with MS get bladder infections, infections that shouldn’t be ignored as I have no way of fighting it and it can cause much larger problems, but here I am with a 10 minute window 5 times a week where if I call I might just catch him. Reality, well it’s what you have read here, someone who hasn’t the memory to catch that point until the problem is that bad that there is at last a breakthrough and my brain actually links up all the dots and success! I just need to wait another 24 hrs at least, well the post brings the prescription, then Adam makes it to the Chemist, it could actually be 48, who knows.
I definately dont see fighting using morphine as being stupid I myself try to stop myself from having pain killers there is always the hope that trying something new will stop the pain etc etc but alas no joy yet 😦 hope the prescription comes soon. HUGS
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i GET it…
have often said in pain clinic…if you could just REMOVE the legs and put ME on wheels???
but i know i would still have phantom pain. lol
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