Coordinating life

I didn’t notice it when I first woke up this morning, but suddenly this house is cold today. Why? I don’t have a clue as it has been a full two weeks without the heating and without feeling cold at all. It may have been the speed that I woke with and left the bedroom that meant the temperature didn’t touch me to start with, or just the fact I needed the loo. I was so pleased to wake feeling like I had to move quickly as things were at last moving inside me. I am under no illusion that I am anyway near being clear, but just going at all was enough to make me not to angry at waking half an hour early. My plan yesterday of not eating anything of any great quantity actually was really easy, I just wasn’t hungry. Each of the three pancakes and the small amounts of yoghurt that I ate, all seemed like too much for me. I don’t think that I have been this restricted in the quantity of food that my stomach will take for several years now. Just like all the times in the past, I feel fine, then suddenly, bang, I feel ill, full and unable to even put even another crumb into my mouth. I have tried many many times to just clear what is on my plate, something I was brought up to do and just never quite managed to shack. That last final little bit turns into a spell spent in hell. It makes me feel so guilty for forcing my children to eat everything on their plates, as I can remember seeing on their faces the same expression I know is on mine, one of I’ll die first before this goes anywhere other than the bin. When I have been on my own, I have quite frequently even had to spit it back out of my mouth as I am gagging on it and I can’t make it go down. Mind you I can gag on salvia at times, so I don’t suppose that is a good gauge, but at the time it is a powerful one.

I thought at first that it was just a coincident, but recently I have been finding myself more and more once again having a problem between breathing and swallowing. What with everything else going on I have been dismissing it as an oddity from the past as I haven’t been bothered by it for a long time. As I said a minute ago, I can gag on salvia and it wasn’t a joke, that is the total truth. I even landed up in the hospital once because of it, for about a month in total, I couldn’t get the coordination between speaking, swallowing and breathing right at all. In the last few weeks, I have had short spells of it. I have suddenly found myself unable to breath because all the muscles in my throat are trying and wanting to swallow, often when there is nothing there other than a tiny amount of saliva. Once that swallow mechanism is triggered it is almost impossible to stop it until it is completed. But the same goes for the need to breath, so the two land up fighting each other and I am caught in this knot of not quite panic, but yes, I would call it fear. Looking back, I can see clearly that it reappeared about a month ago. At first it was just the odd occasion but it picked up and can now happen several times a day, but I can’t trigger it. It either happens or it doesn’t and it isn’t linked to any food time, consistency or texture, just the nerves firing all at the wrong time. I didn’t break it down, but I did say the other week that I was getting spasms from my pelvis up to my jaw, well this was included in that statement.

It kept happening yesterday, over and over from when I was eating my pancakes to late in the evening when I was trying to eat some olives. I had about ten in total and I gagged and had myself caught in a spin three times just trying to work my way through them. I can’t prove it, but I would say that it is fair to say that it is all part of this madness of messages that are traveling down my Vagal nerve and producing all the wrong results. It’s odd how quickly you stop panicking about things that fundamentally are things that could kill you. Finding yourself unable to breath sounds as though it should be terrifying, I actually do remember being really scared when we went to the hospital and the doctor took one look at the mess I was in and admitted me there and then. But when you have lived with something for a few days and you haven’t dropped down dead, well it suddenly gets slotted without argument into this is normal section of your brain and once there, they are there forever. I have often wondered how a perfectly average person who has never been in worse health than having a cold, would deal with just one day in my body, how long would it be before they were demanding to switch back. I do often have to remind myself that being in pain and unable to get around, or not being able to breath, isn’t normal. I have come to the conclusion that it is yet another self-preservation thing, our brains have to switch these things into the normal folder as otherwise we would die of fear if nothing else. Just as they say that humans have managed to become the most successful animal who has managed to populate every section of the world because we are so adaptable, it is the same ability combined with our ability to accept, that keeps people like me going day in day out.

No one’s normal is identical to anyone else, it is one of those things that we all think we know about, that normal life, yet every life is different. My normality may appear extreme, but none of us knows just how extreme ours will ever become, not even me. For all I know, this is still the beginning, only time will tell, but the thing I do know is this, no matter what it holds in store for me, eventually, I will see it as normal.

Read my blog from 2 years ago today – 27/05/13 – The magnifier of symptoms

Some days have a feel to them, something you can’t put your finger on but you know is there, like one of those mobile itches. You scratch at it feeling satisfied that that is it, then suddenly and repeatedly it reappears a few inches from where you last scratched. Yesterday was one of those days, I kept waiting to find out what it was, but nothing seemed to happen, each hour passed……