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……

3 thoughts on “Lost and in pain

  1. Lots of gentle hugs coming your way from me. I have just got over an SLE flare and I know what it is like to just not feel like you are there! Come back when you are ready! xx


  2. Sounds awful for you, seems some days it gets you like this & nothing can put it right, but even knowing that doesn’t make it better!

    I have felt very spacey for the last few days, but put that down to having my old annoying ear filling with hard wax, that won’t go. This time though I’ve had it a week, been putting the drops in, but it won’t clear and as well as driving me nuts, it’s making my balance worse. Decided yesterday I’d try and use the new online Doctors surgery system to get an appointment today with someone. I’ve had major issues trying to register with this, started before Christmas and it was so awful, I gave up, then discovered you had to get another log in from the surgery(not impressed)got this ages ago but only remembered to do it quite recently.

    I then found it didn’t give the option of booking a nurse and didn’t really need a Doctor for this, but booked a Doctor anyway as I was on there, for 3.50 pm today. Went food shopping this morning&when I got back, John said they’d tried to call me but didn’t say what about. It was nearly 12.30 by now, then realised they shut for lunch/phone lines 12.30-13.00pm, how are you supposed to call them if working office hours, crazy&drives me nuts!!!

    I then rang and couldn’t get through, getting very stressed, got through & they didn’t know what I was stalking about! Eventually, I was informed that Doctor was off sick and they had made me a nurse appointment for 3.30pm, when I asked about online, the unfriendly receptionist said, “you can’t book a nurse online”!!! That’s insane, why have I bothered registering online.

    Anyway, back tot the ear, she said the wax was very bad, my drops had softened it, she cleared it out but after checking other ear, that’s not good, so now need to do drops or olive oil and return next week to get that done.I am more and more aware that I cope less and less well with little changes and many other things that I used to cope with more easily, why is this? On top of that, my brother is driving me nuts with his texting, asking to meet up in London, then saying he can’t make various dates as he has more important things to do (like more pubs/clubs/boozing that he does all the time)I then say lest not bother trying to go to a show, he comes back with, “what about” —- the main problem is he has very little empathy/understanding of how I am, fatigue etc., no matter how many times I tell him and when I do go to London to see him, it ends up being so stressful, he walks too fast and keeps wanting to go a pub/get booze and I don’t drink. Don’t know what to do about it, really awkward??


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