Bag of tricks

Usually when I have a bad night, be it down to pain or something else, I have a routine that helps me through it, it’s not hard just a matter of staying as close to sleeping as possible. I know that sounds odd to most people and as I have discovered especially to Adam, but it works. It started a few months ago when I first bought my sleep mask and earplugs and discovered they are something we all should be using. It started as laziness that when I woke, instead of fighting with my hair and the elastic, that I just pulled my mask off my eyes and set it on top of my head like a pair of glasses. I have a true hatred of bright lights, night or day and isn’t conducive to sleep in any way, even if it is only from those pinpoints of LED that fill our homes. Slowly I found myself hiding behind the mask more and more, being cradled in darkness is actually in itself relaxing. I discovered slowly that the best thing to do when being forced to being up and about at night, is to not put lights on, not move around more than you have to and then to move slowly. The oddest part is that I have also found that if I actually stay up longer than needed, I go back to sleep with more ease. Sitting silently in the kitchen, not moving, not doing anything other than relax, will move me gently back into sleep with ease, rather than tossing and turning. What was once a two-minute flit to the loo, now may take fifteen minutes or more, but by keeping myself close to sleep, I no longer loose sleep, well normally.

I honestly don’t think I ask that much of life, nothing big anyway, just the simple things like sleep. So OK it was just one bad night and yes my chest is in a total mess, but when every time you fall asleep, you start to cough, well, my patience runs thin. You could quite honestly ask, “Well what do you expect, it’s the tail end of a bad chest infection?”, but that is just it, it’s not. I have been trying so hard to get my head around this exasperation thing, to get to grasp with its cause and its effects, but, to be honest, I just don’t get it. Infection, I understand, but how on earth can something like a scent, a food or even dust causing this mess? I don’t get it at all.

Yesterday started with such promise, after a goods night sleep, I was ready for a good day and the first two hours being spent coughing, well it felt like a fair payoff. My chest felt as though it was sorting itself out and I was well on the mend. In fact, it was to the point that I could actually feel almost a spring in my step. Two days, one week apart, with no comparison at all and I was due a day of feeling like I was really alive for a change. Those first two hours, well yes there was some rather nasty gunk coming from my lungs, but gunk is good, gunk is the infection clearing itself out. I managed to get everything done online that I had planned and I had even made a start on sorting out those changes that would allow for more flexibility going forward, then I decided I needed my nap. I hadn’t been lying down for a second when suddenly, my lungs were flooding me with water, every tiny movement or cough and I was drowning. It doesn’t take a genius to know that when your lungs are filled with water, that things aren’t that clever. Just like last week I was back at the bottom of the ocean with no air. It seemed like nothing more than a blip as it vanished after a couple of hours and I put it to the back of my mind. The rest of the day, well it was wonderful, little coughing, no flooding and I felt good. For the first time in a while, I even sat here and played a game, but then I think came my mistake, but I can’t be sure.

Last weekend, I suddenly had this odd notion that I fancied eating sausage and eggs, odd because I don’t really eat meat. The idea kept coming and going over the days and suddenly yesterday, I decided to go for it. Within minutes of eating and only half enjoying it, well things never taste as good as they do in your mind, I started to feel ill again and I do mean ill. Nausea came and went and I was coughing almost none stop. We all know just how exhausting coughing can be, but when it is pulling on aching muscles, it wears you down quite quickly and when bedtime came again, I was more than happy to lie down and sleep. It wasn’t going to be that easy though, I was suddenly hit by heartburn, followed by reflux from absolutely nowhere. I had to be four or five hours since I had eaten my dinner, but it was sat there, unchanged and unwilling to give me peace at first. My first hour was spent trying not to be sick and doing whatever I could to just drop into a totally relaxed state, one where I hoped that sleep would follow. Sleep was hardly something I managed for more than a few minutes at a time, as I drifted off, I would start to cough again, a picture that you can’t make into adulthood without knowing. I think that both Adam and I spent most of the night wondering around the house trying to keep the noise down so the other could sleep. but my chest wasn’t having any of it. All night it was one or the other, gunk or water, no rhyme nor reason, no pattern. My temperature was flying up and down but not as bad as before and instead of gaining from my night, I feel as though I have lost everything and been pulled not totally but clearly flat again. So chance? Caused by food? Nothing to do with either? Just part of the end phase? I don’t have the slightest idea or the slightest scrap of energy left to work it out today and it’s just gone 9 am. Tricks or not, being that disturbed throughout the night leads to lack of sleep, especially when your best attempts to carry our your tricks are sabotaged at every move.

Adam doesn’t seem to understand my tricks, he sees my being awake during the night as the perfect opportunity to do things like fetch things from the kitchen, go to the loo or anywhere else he can flood with light. Last night he was studying in the kitchen when I first went to bed, so when I woke, I took my night break in the living room, searching the same peace and relaxation I always do. Each time he appeared in seconds, wanted to talk, switched on lights and kept getting on and off the settee. I know all of it was done in what he saw as a caring effort to do what he wanted to be done, so I had total peace when I returned to bed. In fact, the final time he appeared at around 4:30 with the suggestion of a cough bottle that he had in the cupboard but hadn’t used and I didn’t know was there, was a total blessing. It is also the perfect example of one of the hardest things to deal with in a partnership with three members, the third being a chronic illness., how to deal with over caring that causes the opposite effect. I adore him for all his caring, his love and constant affection, but all illness is hard to understand until you live with it. Ask anyone with a chronic condition and we will all be able to give our own personal tricks, actions and routines that make our lives easier. You won’t find most of them written down anywhere, or even many as actually being explainable to others. Some of them are so off the wall, that, to be honest, well I don’t think anyone but us could possibly understand them. Last night like many others, I wasn’t sat there heading my way back to sleep, I was hiding behind my mask getting more and more wound up by everything and I couldn’t say a word.

I doubt there is a bigger collection of people in this world who land up having stupid arguments than the chronically ill. We don’t want to push those who love us away, but our patience and our demanding bodies are enough to make us do it without any intention or ill feeling. Last night from somewhere I maintained my composure and I said nothing, but there have been many many times that I have failed. The worse my health gets the more I hold on to my bag of tricks, as the less the conventional ones have any effect. There is no way of knowing if the night had played out differently if I would have slept more or not, but it opened my eyes to a fact, love is the most frustrating thing there is when all you want is sleep.

Read my blog from 2 years ago today – 24/06/13 – Looking out for muggers

Adam went back out after work to fetch my new meds, but as I expected they didn’t have the inhaler I required but will have it by this evening. Getting my meds never seems to be a straight forward process, every new drug I get they are never in stock. I took the first of the new capsules which are supposed to loosen and thin phlegm, I have to say that is one…..

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