I lay down last night and in second I was up and sitting on the edge of the bed, I had the worst spasm I have ever had in my diaphragm. Despite all my meds, I was in pain, real pain, not the sort where you are just rubbing or massaging the area, it was the sort of pain where I had to stop myself from making it vocal. I am not one of those people who scream and shout about pain, yes I did when I had my first baby, but not since then that I remember, pulling a face is about as close as I get these days. Last night I gave one of my silent screams, the expression was there but not the sound. I sat there for a minute or so and let the worst of it pass, but it returned instantly when I lay down again. I have tried and tried to work out why it reacts so badly to my lying down, it is almost impossible for me to get close to horizontal without a spasm in my ribcage, not usually that bad, but always within a couple of minutes of getting comfy and settled for sleep. I put my fingers into the gap below my breast bone and started to feel around and found not just a tight, but a totally solid line, as solid as if it were a bone and it wasn’t going to stop annoying me anytime soon. On the third time I was sat up, I gave in and took my little blue booster as not surprisingly it was getting rather hard to breath, pain I am reasonably good at handling these days, but oxygen, well I haven’t learned to manage without that yet.
It is bad enough when it is isolated to my diaphragm, but when it gets tight I normally find that the pain travels up my left side of my ribcage into my armpit, unusually last night it also travelled down. I was actually lying there with varying degrees of pain from my arm pit down to my toes, it was simply unbelievable as muscles all over that side were going in and out of spasm for no reason that I could think of. In all, it only lasted about 20 minutes, but that was long enough as I couldn’t relax out of it, stretch or twist it away, all made worse as I was there because I wanted to go to sleep. Once the booster kicked in I slipped into sleep with ease and I was left in peace for 6hrs, when it started out of the blue again, not normal at all. Sleep is usually my safe zone, the time when my body shuts up and just shuts down giving me much-needed escape, so waking up in the middle of my nights sleep was totally unexpected, I didn’t try and fix it, or even bothered to try, as I just took my booster and I headed into the kitchen for a cigarette while I waited for it to work. It appears as though things are on the move again, as it is now a couple of weeks that I have had heightened spasms in my ribcage and diaphragm, plus of course my stomach, all in the same area and all of them impossible to do anything about other than to just work your way through it. Last night’s inclusion of the rest of my left side is far more worrying to me, as I really don’t want to have to deal with that amount of activity at one time ever again.
Isolated pain is easy for anyone to deal with, you know where it is and you probably have a good idea of what is going to happen. To find yourself in a situation where that isolation has broken and random spasms and heightened sensations are sparking all over the place is actually frightening. I didn’t have a clue what was happening to me, I had never been through anything like it, it was as though someone had shoved something sharp in through my foot and right up to my lung and they were twisting it, each twist pulling a different area, causing burning, shock pains, and spasms randomly as it went. I know that sounds horrific, but outside of my diaphragm, none of it was at a level I hadn’t dealt with before, it was more the fact it was all happening at once and I was losing when it came to being able to contain and relieve it. None of it even lasted for longer than I would have expected, but it was all there and it wasn’t letting up as an episode. As one thing ended, another took over, or even two or three would appear to take its place. If any of them had happened on its own, I probably wouldn’t have noticed it beyond any other individual event. When you live like this with muscles and nerves doing whatever they want without warning, well it gets to the point where I now react to a small spasm or sensation change as I might have done to a sudden itch years ago, they aren’t big deals even worth paying attention to.
Of course, last nights events have left me hyper aware and this morning I am noticing everything and I mean everything. I am on edge just waiting for it to all start over but so far, well just lots of normal activity and like yesterday, long lasting spasms in my upper half of my body. I have been waiting for a while now for my lungs being clamped more tightly and for longer, it was something we discussed with the COPD consultant, as he said my MS is as likely as my emphysema is to stop me breathing. Until recently I had been lucky, things had been reasonably level and manageable, so finding them jump like this I suppose is long overdue, that doesn’t make them any more welcome. Thinking back over the last couple of weeks it is actually hard to pinpoint times when I haven’t had a spasm in that area, all manageable and all bearable, I guess I should be grateful that I have been given the time I have had with life being easy and start paying just a little more attention to them, so that I can have a clearer view of what is happening.
Please read my blog from 2 years ago today – 24/09/12 – Fighting Change
Well here it is day one and already I have an extra hour freed up as I usually wouldn’t even be at this point by now, 10:30 and starting my post is really early. Strange thing is though I am find it hard to push myself into not fiddling with things as I have this inbuilt part of me saying it’s OK no need to be in a……
Oh bless you
I am so sorry you’re having to deal with such random & intense pain! (Any pain, actually) I wish there was some way I can help you. I’ll pray for you & for the pain to ease up.
Oh, my! I feel for you! While I don’t have MS, I do have multiple spinal problems, including severe C4 stenosis. This affects my ability to breathe. What has worked for you when you can’t breathe? My diaphragm also spasms, and all I can do is shallow breathing.
I know what you mean about hyperawareness – my left side has been in total spasm today, and it’s all I can think about!
I am so glad you are able to post and share what this lifestyle is like. You are a beacon of light to others!