Lost and in pain

I’m not here today. I don’t know where I am but I just know that I don’t feel connected to myself, somehow lost. I know in the last few months this has happened several times, but I will never get used to it, I guess it is as close to one of my ultimate fears as I ever want to get, my mind so taken over by drugs that I can’t find myself. I don’t blame the drugs for this because if it were them, well I would feel like this always and I don’t. It is though as I would imagine the effect of higher doses of morphine would cause, where your mind is in a cocoon there floating, not quite connected and not quite so lost it can vanish into a dream, just existing in a reality that it has let go of.

I have had to push myself through almost every second of this morning, constantly aware that I am not connecting with my actions, just on auto pilot and even then, an auto pilot someone forgot to program correctly. Every few minutes from nowhere I find a tear slowly running down my cheek and as long as I ignore it I can hold at one, stop wipe it away and then the flood for a few seconds before I can stop them again. The madness point, as always, is that feeling I should be totally somewhere else, not just in place but also in time. As I said the madness point as what else can explain a feeling so totally alien but so totally at home and logical in its depth. It’s not as though I can actually just shake it off, I’ve tried that a million times, just doing something that will pull me back, snapping me out of this place and make me feel whole again. Unlike if this was caused by medication, I can’t even balance it by saying I’m not in pain, as I am, just as I always am. It doesn’t happen often but this is now clearly part of whatever is happening to my mind, I can no longer just put it down as a strange one off that hopefully will never happen again, it’s happened too often now to just do that. Just like I can remember flares in the distant past I actually do have some memory of this feeling being around at times in the past as well, I can’t pin them to a time, it’s more that I have no feeling of newness, it is familiar revisiting on many levels.

Just like I get days when I have bad pain that I can pinpoint exactly inside my skull, I can’t help wondering if this inability to connect, has something to do with a lesion appearing or growing. If you read information on MS it doesn’t actually link directly anything to the lesion other than of course ultimate effects of them, but if you Google “brain lesions” the information is very different and much of it causes that light bulb moment of “I know that!”. Of course, the ultimate questions I want answered aren’t there, when will the ever be? To me the simple questions are always the ones that no one has answered, I can find as much complex stuff out there but the simple yes/no answers that would put my mind at rest, are never ever there.

Things weren’t right yesterday, most of it I put down to the nausea, although kept under control by the meds, I still felt sick most of the day. Even then I was feeling a little cut off from life but nothing compared to today, but just as I said yesterday, I could so easily just go to my bed and lie there, not sleeping just doing nothing at all. Anyone who has read for a while will know that this isn’t the normal me, something I hold onto, as long as I know that one fact, I am still here.

I know that when I went to bed yesterday afternoon and last night that I found myself having a lot of difficulty breathing, this though was something that I could put totally down to my MS. My intercostal muscles were locked within seconds of lying down, I had hoped that by altering my mattress position that I would find a point that eased it but not so far. I just wish I knew what it is about lying down that triggers them, not only the intercostal muscles react, but also my lungs feel as though they are turning to lead. I have had no peace what so ever from my diaphragm now for months, regardless of position, there is something about this part of my body that my MS has taken a great liking to and has no intention of leaving them alone again. I can’t help wondering if my shallow breathing at night isn’t playing a part in how I have felt in the last couple of days. It’s a thought but I have nothing to prove it in any way.

For now, not only my brain but my arms have had enough of typing for today, I am so tempted to take one of my booster tablets just to deal with it, but the thought of adding more morphine when I am already so disconnected and lost, well it is just not going to happen, the fear of totally losing it, is just too great.


Please read my blog from 2 years ago today – 10/03/12 – Flare day 5 

This morning I was on the phone to a friend talking about his drum kit, after a few minutes I have to say my mind started to wonder, although I was in the music business years ago I was never really into the finer details of different types of cymbal. For the first time in the past couple of days I found myself grateful for an extremely painful spasm. As he started to discuss the fact that his snare drum was made of brass, tears……