Finding myself awake in the early hours isn’t unusual, awake and not in pain, is. Don’t get me wrong, I was glad to not be in pain. Well at least not pain so bad that would have woken me, I just wasn’t that glad about not being able to get back to sleep. It wasn’t even as though I had anything running around in my head, nor was I anything like ready to get up. Something that was confirmed by the unmistakable feeling of exhausted muscles, a general ache and reluctance to move when asked to. If that wasn’t enough to tell my I should still be asleep, well there were those jaw cracking yawns that I simply couldn’t stop. I was just awake. I lay there for a while just trying to work out what had woken me, but there wasn’t even the slightest memory of an event or sound. I was comfortable, warm and as close to physically asleep as possible, it was just my brain that seemed to be searching for reasons and I couldn’t stop it. I know we need them, but if there is one part of the human body that causes us more pain, anguish and annoyance than our brains, then I would like to know what it is. I was clear that I was going to have the play the game of distraction. It’s been quite a while since I last had to take those steps, but it works. I lay there simply telling myself a story. Memories don’t work, nor does going over what I might write in my blog. Those are the things that need active mind cells and keep me awake. Storytelling requires a totally different skill and it’s another from my list of ticks and in the middle of the night when I can’t get back to sleep, it works. Most of us give up make-believe around about the same time as we discover books written by people who are far more skilled at it than us. I don’t know how I discovered it, but I did and it’s pure escapism. I am under no illusion that I could write a work of fiction, but it’s fun to play with it in my own mind.
I guess it worked as the next thing I was aware of it was 7:30, time to get up and start another day. Within minutes of getting up, I wished I stayed that extra hour as I often do on a Saturday. I had just sat down at my PC to discover that the space bar on the keyboard was sticking. Not only sticking, but was really hard to push it down in the first place. I had sat here yesterday afternoon eating my Psyllium pancake when a large lump of blackcurrant jam fell out the end of the roll I had formed and landed on my new keyboard. I thought I had been quick enough to clean it off, but clearly I hadn’t. 20 minutes of trying to clean it with a gentle solvent and a scalpel, the only thing slim enough to get into the gap, I at last had something close to the normal movement. I was just glad that Adam was in bed as I know without a doubt the second I fetched the scalpel he would have wanted to take over. I think telling him the other day that I knew the time for me to start using my wheelchair in the house was close, has made him also realize that things are progressing and his role in my care may have to grow again. We had spoken a long time ago now about drawing up what might be called a care plan by some. What we were looking at putting together was a book with everything from the foods I like to eat and how I like them prepared, through to my meds, sleep and even the types of creams, cosmetics and toiletries I use. It was meant not just for Adam, who trust me, like so many men, doesn’t really pay as much attention to these things as we women seem to, but also for hospital staff, should I land up there. Suddenly yesterday from nowhere at all, he mentioned that he had been thinking about buying a book so we could start building it. He’s right, there is no point waiting until I am so ill that it’s needed, that is when it’s too late, it has to be done long before that.
It is so easy to put all these things off and off again. It somehow makes things too real, when you start putting in place those steps for a future no one wants. There is a huge difference between thinking these things through and realising that there will be a need for them than actually putting the time aside and doing them. The first time I thought about it wasn’t long after I became housebound, finding myself trapped here in the house made me think about a lot of things. I think it was probably the first time that I allowed myself to consider the future and what it really meant to not just me but us. Until I was housebound, I may have been ill and in a wheelchair, but I was still the same as everyone else out there in the world, I was still working. I know I worked for another 3 years from home, but that door shutting for the last time was a huge wake-up call. It, unfortunately, didn’t last and that was for a simple reason, there was a huge improvement in my health. I still couldn’t go anywhere. Removing the everyday stress of getting dressed, leaving the house, being around people and still trying to work as well, had been removed from my life and it changed everything, apart from the dead arm. Within months, I found myself in an odd position, feeling better than I had for years but housebound. That boost to my health lasted for the next 4 years, yes there had been a slow decline, but it took those years to reach the same point without outside stress to blame. When my COPD was diagnosed we thought again about what needed to be done for the future, but once more both of us shelved it with the idea that we had plenty of time. My body is telling me that that time is ticking away and Adam can see it and knows it too. Maybe this is the point when we can’t afford to shelve it again, if I were to have another exacerbation, well that would find me in the hospital and in need of that book.
I found myself yesterday evening as usual sat on the settee finding it hard to breath. In fact, since the beginning of June when I was really ill and the doctor insisted that I needed a Ventolin inhaler again, one has sat on the living room table. I haven’t been using it, I have frequently stared at it and thought it needed to go into the bin, but not used it. Somehow in my head the fact it had helped when I had pneumonia made sense, but I had connected it to that bout of illness. I had actually had a Ventolin inhaler for many years as I had been diagnosed with Asthma years ago. When I became housebound I found that I never seemed to use it. I put that down to one simple fact, I wasn’t doing anything to get breathless, so I simply stopped getting any repeat prescriptions. My COPD was diagnosed because I was sent to the hospital for the pain in my chest, not because I was short of breath as at that point, it wasn’t worth mentioning. The hospitals diagnosis was a 50/50 split between emphysema and my PRMS, but in my head I was still blaming my PRMS for more like 80% of it. For the last couple of years, the majority of the time that I struggle to breath has been because of my diaphragm and my intercostal muscle spasms. It has only been more recently that I had found myself short of breath in the more traditional form, but somehow I never once thought of using the inhaler. For some reason last night I reached out and used it and it worked. It didn’t make it perfect, but it did help for about an hour when it slowly closed down again.
I have to be a thick as two short planks to have sat there for the last few months unable to breath with the answer sat there right in front of me. I have used it again this morning and once again it has eased it, but I did run into a problem. To use it you have to draw it deep into you lungs and my ribcage and diaphragm were both not at their best. Taking that deep breath and holding it, was really painful. Thinking about the times that I would reach for it, would probably be when my chest is tight. Most often what happens is that I am short of breath and land up taking small sharp breaths, doing so often upsets the spasms and they start to constrict. To date my way of dealing with that is to change the pattern. I take shallow breaths but slowly, as I slow down my breathing I am able to take in just that bit more air. I guess I don’t only have something else to add to the things to speak to the consultant on Monday, but I have yet another thing to play around with and work out how it will work best for me. I seem to have a lot of things to think about and action, I just hope that my brain can behave itself for long enough to actually do it.
Please read my blog from 2 year ago – 05/09/2013 – Myth or magic
Two Rooms Plus Utilities 