No surprises that yesterday’s first run of Adam telling me what to do went fine, with everything there active in my mind, I would have been totally stunned if it had failed, the real test is will it still be working one month from now?
One full day on from talking to my MS support worker and once more I am finding things jumping into my head about either what I did say and of course what I didn’t say, but that is always the way. I honestly wouldn’t believe someone if they said that they sat down and spoke to someone like a support worker, or doctor, or nurse and them saying hand on heart, that they spoke about absolutely everything they had intended to. Even if they did have a list to refer to, I know for a fact that it just doesn’t happen. It has to be one of the biggest problems about meetings, both of you have an agenda and both of you will pull the other to places where they didn’t ever expect to go. Although I mentioned the Hug, if that is what it is, I didn’t tell him at all about the vastly increased spasm that I have been living with for the last few weeks. Everything else just took over and I was so wound up after he said that he thought I really needed a carer, that I found myself unable to think of anything else. All I was thinking was there has to be a way round this, there just has to be some other option that he and I are missing, there had to be. I don’t know what I expected him to say in response to my telling him about the problems I am having with my personal care, I guess somewhere inside I had the knowledge that said it was the only option, but I had desperately been blocking it, dismissing it as even a possibility, I am after all human.
Just like any other meeting like that, I have had now a rather numb feeling towards it, as though I have accepted that I have opened the can and now that it’s open I can only go with it and see where it takes me. The last thing I said to him on Thursday was that at least I have now told someone and that is still the overriding feeling, that I have warned them of what is happening and what happens now, is still at least in my control, but it won’t come as a shock if I pick up the phone to my doctor and say that I need something stronger than Savlon to deal with another area of rotting skin. I am hopeful that Adam and I between us can deal with some of the problems, but my using the catheters, I still don’t see a way around that one. Over the last few years I have had long spells when I haven’t needed them, but then the issues of sitting trying to empty my bladder for 5 to 10 minutes, start up all over again. When I can’t clear my bladder, I start to be in danger of bladder infections and the fluid builds up around my body, then I have to start taking the furosemide. When it has become really bad, I have then started to use the catheters occasionally, but I have twice in the last year landed up having to get antibiotics despite, or possibly because I have been using them. The most annoying thing about all this, the thing that really makes me mad, is that I can sit here and write about what I know I have to do, I could even write a step by step of the actual actions required, so why the hell can’t I get my brain to make it all happen when it needs to. I can apply total logic to the whole situation, but I can’t actually carry it out, if that isn’t madness, then please tell me what is. Right now I have decided that I am not going to write any more about this for now, I think I have to stop just going over and over it, I have to stop thinking it through and reworking it, as I feel as though that is all I have done now for the last couple of weeks, so far I have achieved nothing, just a slow torturing of myself.
Those who are still with me from the start of my writings will know that my MS has been very much a left sided condition, I’m not saying that nothing ever happened on the right-hand side of my body, but it has always been my left side that had the worst of everything. In last few weeks I have noticed and I think mentioned that my right side is now very active and for now overpowering everything that is still happening on my left side. I am making a guess, as I rarely mention anything new until it has been around a few days, but I am guessing that I have now gone at least two weeks since I was last able to feel my right leg as being anything but normal. I seem to have this constant mild spasm, muscles just tight enough to cause pain and moving position, just doesn’t make the slightest difference. My upper thigh muscles is the worst and often cause true pain, but my shin, calf and even the small muscles in my feet have all joined in, it is feeling as though they are slowly setting, locked as they are and unwilling to wake up again and work. Actually, that is a really good explanation, they are locking up and turning solid, which means they have no give or flex to them, just solid and mildly painful, with the occasional spike. Sleep sometimes works like a reset button, but I have equally woken to find myself in just the same or even a worse position than before I went to bed.
That in itself has been bad enough, but strangely today, I have found something new, what is making me write about it so soon is because it is so odd. I have never had this sensation before anywhere other than in my limbs, but today I have that same locking up and setting sensation in my right ribcage and into my shoulder and neck. It is not like the spasms I get in my intercostal muscles as this is more spread out and blanketing, rather than defined to a particular spot, it’s not my emphysema because it is on the outside, not inside of my ribs. The closest I remember is when I have been lying in bed and I get the sensation of pressure, but this isn’t the same, there is no feeling of something pressing down, it’s just becoming locked. It is fair to say that I feel right now as though my entire right-hand side of my body is becoming fixed, reluctant to move in any way, trust me it is odd, but MS is good, really good at odd.
I am clearly not in the pain I was a few days ago, nor am I suffering from the flares of tension that made movement almost impossible, but it hasn’t gone, it’s all just been changing again. I guess this is just the next step and out of the two, I would choose this any day, it’s not nice but it’s liveable.
Please read my blog from 2 years ago today – 05/07/12 – The occasional jail
I woke early this morning due to the pain in my legs, you would think that lying down would easy it and improve things by the next day, but unfortunately, my muscles don’t understand night time or respect it, my mind may sleep but the muscles keep tensing regardless. I came through to my PC at 6:30 am, sitting is often less painful than just lying there, I do often wonder if that has more to do with distraction…..
So pleased to hear that you are not currently having the severe pain that you have had in recent weeks 😀
And as far as having a carer is concerned. I understand your desire to avoid having one, but even if you try it for a while, you don’t have to continue with it if you decide not to.
Take care x