I just realised just how weird my life has got, how many people have spinach quiche for breakfast whilst watching “Downton Abbey”. So OK, maybe the breakfast was odd even for me and my choice of TV was brought about by the fact we had to change the sky box and I lost my backlog of really good documentaries, but the facts still stand, my world is a million miles from the one I used to live in. I remember a post I wrote a couple of years ago about how difficult it would be to return to that world should they suddenly be able to cure me, if I thought it would be hard then, well the very thought of it now, seems to be even harder now. For those who are fit and healthy, well that sounds odd I am sure, I have tried to find the post but couldn’t, but I guess the simplest way to put it is to say it would be like trying to return a caged animal to the wild, I have forgotten the skills I need to live out there and it a very big place.
The last three nights in a row, I have spent the evening sitting on the settee trying to find a position where I could just quite simply breath. Over the last couple of weeks, my diaphragm spasms have been getting worse and worse, to the point that drugs or not, they have shifted over the line between uncomfortable with pain, to just plain pain with severe discomfort. I kept hoping that they would just settle down, that they were just in one of those phases and that well, things would just return to how it was before, but I am beginning to fear that it is here to stay. The last time I talked to the Doctor I mentioned it, but in the context of what was happening with my bowels, I had it in my head that it was being aggravated by the pressure that was building, then I cleared the worst of it and my diaphragm got worse. There is also one other big difference, when they are at their worst, I am now also getting pain in the back of my lungs when I sit forward and in the front when I lean back on the cushions. Both yesterday and today it was actually there when I woke up, totally unchanged by my nights rest, which for once was only broken the once by the desperate need to stand up and move. I am now rather confused by it all, but no matter whether I go back to the idea it is a side effect of my bowels or it is just what I was expecting to happen as time went on, there is only one way to find out and that is to see what the doctors at the hospital will say when I go to see them.
I suppose this is one of the problems that those of us who live with multiple chronic conditions have to live with, the constant questioning as to which condition is actually at the root of things, how do you treat something that you don’t know what the cause is. I alway knew that as time went on all these things would keep getting worse and that my future is going to be painful and increasingly difficult, so it’s not unexpected, but I somehow didn’t expect it so soon, nor did I expect to not know what was causing what to such an extreme. I know I have been here many times, is it this or is it that, but somehow this seems bigger, I expect it’s because somehow the questions get bigger and bigger as the pain and the illness get worse and worse. Oddly as well, although I want the pain to stop and to be able to do the things I always do, but I am much calmer about the whole thing than I ever thought I would be. It is a really odd thing finding yourself in pain and only able to take shallow breaths, when your actual lung feel and sound totally clear. I am so used to in the past having things like bronchitis, where you feel like you are trying to breath underwater, then it makes sense and you can settle it in your brain that all you need is time and an antibiotic, neither will fix this. Degenerative autoimmune conditions were your own body is working on stopping doing what it should are a really hard thing even for those who have them, to truly understand or accept. I know that my PRMS is working on shutting down the process of breathing by locking tightly all the muscles that actually make it work, but knowing it and fully accepting it aren’t just two different things, they are a million different things, just as my feelings towards it are.
As I said, I am calm about the whole process, but I am also at the same time scared about what it will be like as it gets worse and worse, I would already have to be dead to not be scared. When I was told that I had PRMS, I thought that my future would be that of being in a wheelchair all the time and eventually, somewhere in the distant future, probably not far from the age of retirement I might then be housebound. So finding myself still in my forties and housebound was a shock, one that only lasted days, I still had a job to do and a slow long journey back for my left hand to full function and once fixed, then I would be able to use my wheelchair again and I would be out there once more, another thought that was wrong. I have learned from both not to have high hopes, but I still have dreams and they too are slowly going wrong. There is such a muddle going on in my head all the time, but overlaying it all is this calmness, one that seems to be unbreakable for now, yes there are times when tears or fear can grab hold of me, but they never last and the calm returns. To date, the one thing that has always surprised me is the fact that when my pain as at it’s worst or for a second I feel as though my breath has been stolen, they are the times that that calm is it’s fullest, the fear follows later.
I suppose that the greatest blessings we have as humans are optimism and hope, they are probably the strongest medicine there is. We kid ourselves with such ease as to what our lives will be and where they are going, ill or not, we all live with rose coloured glasses fixed over part of our brain, despite knowing better as reality is seldom rosy. It appears that they remain fixed there no matter how clearly our futures are laid out in front of us.
Read my blog from 2 years ago today – 17/03/13 – OT or OTT > http://bit.ly/WPvJFz
It has now been 11 months since I requested to see the OT to help sort out some of the problems I have been having sitting. The cushion I had given to me years ago for my wheelchair has had it, it has firstly gone kind of hard and the gel packs have burst meaning that sitting was getting more and more painful, not just for my backside, but it is causing pain……..
“THE CALM”?IT’S AMAZING, WHAT OUR BODIES DO TO PROTECT US. THAT “CALM” IS WHAT’S KEEPING YOU FROM RESPIRATORY ARREST.HOLD ON TO THAT CALM AND SEE IF YOU CAN PRACTICE IT. I DON’T KNOW (I HAVEN’T READ) IF YOU HAVE A PORTABLE OXYGEN MASK.?IN DUBLIN, THINGS MAY BE DIFFERENT. IN CANADA, YOU WOULD ALREADY HAVE ONE, WHICH WOULD MAKE THINGS EASIER.YOUR BODY WOULD RECEIVE SOME, MUCH NEEDED OXYGEN, WHEN YOUR SPASMS ARE SO PAINFUL.IT WOULD KEEP YOU MORE LEVEL HEADED, AS OPPOSED TO LIGHTHEADED (LESS FALLING).YOU ARE HOWEVER THE MOST LEVEL HEADED PERSON; HEALTHY OR NOT,I’VE EVER HAD THE PLEASURE OF COMMUNICATING WITH. MOST PEOPLE CAN’T FORM A SENTENCE, AND THEY’RE JUST LAZY AND INCONSIDERATE.GOOD LUCK AT THE HOSPITAL. GIVE THEM HELL FOR THE THOUSANDS OF US WHO MUST ENDURE THEIR CARELESS EXCUSE FOR MEDICAL CARE. LOTS OF LOVE …NEVI
What a powerful post. I am so glad I just read this 🙂
You have so much wisdom to impart as a result of your suffering.