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……

Make your choice

Sometimes I simply hate my memory, I had a perfect start for this post thought out last night, then I spotted a comment I needed to answer and the whole thing has vanished. I know that most people who write make notes when ideas come to them, but for me that would never work, if I were to sit up in bed and write something down, I would never get to sleep, the real point of being there. I guess that just means that I have to live with it, but I can’t help wondering just how many wonderful posts since I started this project have been lost for ever. There have been and always will be days when I sit here ready to write and my brain just lets me down, I guess that means they will increase not decrease, but one thing I have learned is if I start to write, something always will appear and inspiration will flow. One of the odd things that writing has taught me is just how different people reading it, will find different thing within, often not what I wrote at all, probably because we always reflect our own lives onto everything.

I had a tweet yesterday from someone who clearly had read a tweet and followed the link coming straight onto a post, from the last couple of days, a pitfall for anyone coming new to my blog as the past is missing to them, but they made me think about a post from a long time ago in which I listed all my condition’s at that point in time, I made a list of 12 separately diagnosed conditions, which clearly don’t include my emphysema and gallstones, the most resent additions. When I made the list I did so more as an exercise, just to see what was really going on inside me, as I had recently become aware of others like me with more than just a couple and I wanted to see just what was there. I know all to well that I am not alone with such a list, many many people have multiple health issues and many with more than I have, but that was what I found myself thinking about, just how many I might have by the time I die, other than the one I die from and bizarrely what the longest list someone has ever had and still been alive. Let me say right now before some fickle finger of fate, decides to see that as an invitation, I don’t want that world record, in fact I don’t want even one more thank you, I have enough. It all of course depends on what you consider a medical condition and not worth mentioning, for example I didn’t include my tinnitus, it is extremely annoying at times, but for me isn’t bad enough to drive me mad as it does some people. These days thanks to the inventing of a group all term of COPD, I now take my asthma, chronic bronchitis and emphysema and group them under those 4 letters, but they are different conditions. The thing about all these different conditions, as it is all relevant to the individual, I personally as regular readers know only really talk about my PRMS and COPD as to me they are the conditions that effect me the most, the rest are there and they make themselves know at times, but I mainly dismiss them these days.

I have never despite having had MS for 30 years now and the rest appearing along route, not been the type of person who let’s any of it get to me, I still find it really hard to believe just how ill I am and I still get stupid ideas about somehow managing to work and get back to the life I had, you never stop dreaming about that. I always thought that I would be the person who worked to my dying day, not that I though I would die young, I just never thought that I would ever retire, I was going to work forever, being carried away from my desk to a hearse. For me it doesn’t matter how bad things look even when they are there in front of me in black and white, my personal list doesn’t matter, what matters is enjoying life and that is something I find incredibly easy as long as the pain stays at it well controlled level. I think if we all sat thinking about nothing other than where our next breath was to come from, well we would all stop living very quickly. I know it isn’t easy for those who don’t have something like PRMS to understand, but in the early stages life isn’t that much different, yes there are spasms and a constant back ground pain to everything you do, but I lived through it without medication or help from anyone. Once they worked out 20 years on what was wrong and what was happening they slowly got the medication right, apart from a 4 year spell when it was hellish, but even then life was still manageable. Yes there is horrendous fatigue, exhaustion and pain, frequently all together and yes these days I am rarely without pain from my diaphragm, I feel sick and find food a problem, but there are windows in everyday were life is still great and they are the hours or minutes I hold onto. To some people I know that wouldn’t be enough for them, but I focus on those good spells, I can deal with the pain, I have no choice, I can deal with the body that doesn’t do half the things I want it to, well not even a quarter, but whose counting, it’s my body and I have to live with it, not despite it.

Daily I pour out here what is happening to me, the good, the bad and the funny when they occur, I also pour out the things I am struggling with, struggling to settle in my mind, like the fact there is less and less of it to settle anything into. I write about my fears, disappointments and my future, I pour out here what it is to be human, as strangely enough I do still have that on my list of things to do as well. This is to me the place where rather publicly I open up my brain to examination, as Adam once said this is my personal psychiatrist as if I bottled all this up, well he’s quite right I wouldn’t be as happy as I am and happiness is essential. If you are going to survive chronic illness you are going to have to go through daily such a complex set of feelings, not just the emotional sort, that you have to find a survival plan that works for you. I know that I am so lucky to have Adam, but he is normally with me for just a few hours a day, that leaves a lot of time for me to spend alone, a lot of thought and a lot of emotions, most land up here and by the time we are together again, well we can then enjoy our time together without me feeling sorry for myself and him having to listen to the mess I call my brain.

All of us have to make a choice when our bodies start falling apart, I made the choice to keep going, I might not be able to work to the end of my life, but I can live to it.


Please read my blog from 2 years ago today – 15/11/12 – UK Roulette

I warn you know that some of you will disagree with what I am writing today, but this has to be here like all the rest of it as it is a true factor of my life and what MS has made me and others have to think about.

Years ago when I was first diagnosed with MS and I was facing an unknown future with a progressive illness, Adam and I……