It has to be recorded

When I sat down to write yesterday I had the intention of writing a very different post than what eventually appeared. That’s not that unusual for me, my brain just runs off on it’s own plan and I land up where ever it takes me, I didn’t remember until I reached the last paragraph but there was just to much to say to add it in at that point, so I made a few notes for today, otherwise I knew it would get lost again. So today I am starting with something that has been bothering me for a while, I just for some reason hadn’t written about it. To be honest there are often symptoms that appear and I wait to see where they go or if they just simply go before I write about them, everyone ill or not get’s one off occurrence of things that don’t quite make sense or simply never happen again. In some ways I haven’t been able to get out of a habit that appeared before I was diagnosed, being so used to not being believed by anyone, I simply didn’t speak about or go to the doctor, until I was sure it was real or I had had the same thing recurringly over several weeks not just days. I did sort of start this yesterday by talking about the fact that the focus of my PRMS has moved it’s focus and is now attacking my upper body far more than it’s original focus of my legs.

About two months ago I started having more pain in precise areas of my ribcage, at first it was just in my sides curving slightly into my back, especially my left side. In fact it is there just now, which for me was one of the things that I found odd, as the worst of my pain and breathing problems always seem to be at night. Then a pain I have had at night for a while in my left side again, but in my back which I had been putting down to the way I lie in bed, I had been assuming that it was a pressure point more than anything else, but there is no pressure when I am sat up. On there own, well neither are earth shattering or so bad that I would have even considered writing about but they have brought one other thing with them that has to be added here as part of my record of what is happening. It has only happened about a dozen or so times, most when sat right here just doing what I am do daily, so there is nothing that could have triggered it, as there is no stress in daily life. In some ways I would describe it as a massive spasm, as the contracting pressure is very similar, until now the spasms in my intercostal muscles always been in single bands, following the line of one or two gaps between my ribs, so this is new. Yes the first time I did wonder if I was having a heart attack and I did sit here feeling a combination of shock and fear, but there was something stopping me from calling for help. The worst pain was in my sides, not my front or even back, a place where many women feel a heat attacks and there was no pain in either my arm or my jaw or any of the other places it could possibly appear. Some last longer than others, from under a minute up to about 5, then they slowly subside and everything goes back to normal. Relaxing and slow, shallow breathing seems to make a difference, if only to take my mind off some of the pain, as yes it is truly painful and there isn’t anything you can do about sudden pain like that, tablets don’t work fast enough, I doubt anything would.

Each attack has varied not only in length and intensity, but also in their focus, yes the pain goes right around me and it is more often most painful in the left side, but a couple have switched to the right and one it was right in the middle of my chest. A couple have happened when I was in bed actually in the process of falling asleep, put it all together and the picture is clear to me. I believe the pain in my back and left side is my Emphysema as trying to take deeper breaths makes it more painful and it is becoming part of every day life for me now, rather than just now and then. The attacks, well that I believe is my PRMS doing what the doctors warned me of over 18 months ago. It appears that it has had enough of just a couple of intercostal muscles at a time and has decided to go for them on mass, something that to me makes more sense than the singular ones. I have always struggled with the concept of the MS hug, as I would have thought that causing two separate muscles on different sides of your body to go into spasm at the same time, was some what unlikely. When you breath all your intercostal muscles work together doing their part in process, to me it seems more logical that if it was triggering the nerve that makes them work, it would be triggering them on mass. Clearly MS hugs exist, I guess then mine just wants to give me really big hugs and has become fed up with just it’s once playful ones. I was told that the danger from my Emphysema might be lessened if I stopped smoking, but there was nothing that could be done to change what was happening with my mechanics of breathing, which even then was what they thought my main issues where. It seems it has stepping up things when it comes to severity, add in the increased diaphragm spasms and I suppose it was inevitable that this is what would happen.

As I said this so far has only happened about a dozen time, but that is enough to not be able to brush it aside and say it’s not happening. I am still in between having the hugs I am used to but trust me it’s not nice to find yourself stuck in a vice that is crushing the air from you, so far it isn’t bad enough to make breathing impossible and as long as I stay calm and breath slowly until it passes, I’m fine. In some ways it is probably easier for me to deal as it hasn’t appeared out of the blue and I have been dealing with pain for years, I know how to totally relax every muscle I have control over, unfortunately, there is no controlling a spasm, large or small.

Read my blog from 2 years ago today – 12/12/12 – A test for confusion

I seem to be breathing through water today, but the strange thing is that my throat and my lungs don’t hurt at all. I know I have a chest cold that is for sure as I am clearly not well beyond normal, but all the discomfort that normally goes with it just isn’t there, so maybe when doctors say……

Space to heal

It’s odd the things that annoy us, right this second I can think of two, the TV channels that don’t have consistent volumes over both adverts and programs forcing you to be blasted out of the room during ad breaks and my internet provider. No my internet connection is fine, I’m not just about to vanish, it’s just they keep moving the servers I am connected through, probably to do with volume of traffic, right now I am connected through Beith, sometimes it’s Kilwinning and of course mainly Glasgow, where I am. 99.9% of the world wouldn’t notice or even care about these things, but that is what makes us all different.

Yesterday turned in to one long struggle, I seemed to just drift off into some other world unable to keep going until anything was complete, I was tired and not in the way that I would normally be, it was the kind of tired where you just wanted to curl up somewhere warm and soft and just lie there for the sake of being there, cocooned and cared for. If we had a deep fluffy fur rug in front of an open roaring log fire, that is where you would have found me, content to let time and the world pass me by. In all honesty, it has been a growing feeling that has been with me now for several days, I just want to switch off for a while, to hibernate if you like. I have never asked anyone but I am sure that I am not the only one who gets like this at time, I’m sure because it feels like a feeling that is right, not disjointed in anyway, a feeling that is part of our collective feeling, those we all have with us through out life. If there is one thing that I have learned from sharing my life on line is that those feelings or events that make us feel isolated and unsure of, actually are shared by far more people than we ever think possible. Every time that I have written a post tentatively asking am I going mad or is there anyone out there who understand this or that, someone always comes back to me saying they do and some even add in the bits I was to tentative to add myself.

On one hand the need for hibernation is a wonderful feeling it is so cosy and so tempting that every time I drift towards it, I don’t really want to return, but there is where the problems lie, as I drift too long and then put myself under pressure to catch up with life. All day long I was either drifting somewhere or racing flat out scolding myself for being so stupid and to snap out of, but you can’t snap out of wanting to sleep and the more you try the more the feeling of walking through mud in Wellington boots that are 4 sizes to big grows with it. Right from when I got up I was aware of it and by the time Adam left for work I was already facing a hurdle that I never got over, any more than I have so far today, breakfast. This is now the second day in a row, where instead of making my porridge and picking at it until I could pick no more, I just haven’t even made it. I know without a shadow of a doubt that I couldn’t eat any of it, not even pick at it. I haven’t the slightest desire to eat, I am not just not hungry, I feel like I have not long eaten, my stomach has no interest in having more added to it, even taking my meds was hard this morning. My stomach and diaphragm were already locked in spasm when I got out of bed and even waiting an hour had made no difference at all. It was around 11:30 yesterday that I remembered that when I did the shopping I had bought some mince pies, I not a huge fan of sweet things, but I have always had a nostalgic view of them, rather than a food view, brunch became a mince pie and flash travel through all the idyllic Christmases that never were. Christmas has to be the oddest times of year, when ever I think of it I think only of the wonderful decorations that I used to fill the house with, when Christmas arrived here, it arrived with all the history and glitter that I imagine the finest Victorian Christmas crossed with a Hollywood powered scene. That to me is Christmas, forget the presents, or the rest of the food, decorations and mince pies, does it for me. A mince pie and memories took me through until after my nap, when I eventually ate what should have been lunch, I may not be a fan of sugar, but the one thing it does is it lifts you short term energy and as mine is really low, I doubt there could have been a better meal if I had tried to find one.

I keep hoping that this will just pass and that food will just slowly slip back into it’s normal place in my life not the focus. I am also trying not to focus on it, which clearly I am failing as well at, but when you keep feeling sick all the time, well it’s hard not to think about it. I remembered yesterday that in my medicine cupboard that I had anti-nausea tablets prescribed last year, to my joy there are still in date and once I took one the nauseas feeling actually shifted, I still didn’t want to sit down and stuff myself, as well I still felt stuffed. I did though get through the rest of the day feeling not too bad and when it came to taking my meds this morning I included yet another, for some reason it hasn’t fully worked as it did yesterday, but I did take this mornings along with the rest, maybe it would work better alone, I will try that later. I am happy for now to see if I can settle the nausea without eating if that is what happens, but if I can stop feeling sick, I think my appetite will improve, I may not eat much, but what I do eat, I enjoy eating, maybe by lunchtime I will feel more like it.

There is an odd thing that seems to happen as your world closes down to a few basic elements, that those elements become incredibly important. I have noticed that what ever it is, that element takes on a larger than life importance, for example, housework. As I was becoming less and less able to do it, Adam took it over, for that first years I was driven mad by it, i think he was too, as I would follow him around the house correcting things, then telling him again and again how to clean things and how I did things. Try as I might I couldn’t stop myself, I was fixated by that one thing. It wasn’t something that was life threatening, but that was how I felt about it, just as I was when I fist lost the use of my left arm, I went mad trying to make it work, testing and testing again, but as the months past just as my arm slowly came back my fixation on the housework fixed itself. Right now I can’t see past the issue of feeling sick and not wanting to eat, I can tell myself over and over it will settle down, my body will work it out, all I keep doing is looking in the fridge or the cupboards trying to tempt myself to eat, then feeling sick and giving up. I keep picking at the scab and it doesn’t heal, I just wish I could leave it alone. Maybe that is the answer, don’t try to eat, just take the anti-sickness pill and only try eating again tomorrow or maybe the day after, once I have given myself space to heal.

 

Read my blog from 2 years ago today – 13/11/12 – Wheels for the brain

I am still finding staying awake a little on the hard side just now, last night just like the last few I was in bed before 9:30 and still asleep when the alarm went off, add in my 2hrs in the afternoon and well my awake time is becoming very limited to say the least. When awake I feel drained and given the freedom that I don’t…..