Routine affairs

There are days when life just seems to take pleasure in screwing you over. It doesn’t have to be the big thing, in fact, if it’s a series of small things, somehow, that is even worse. I know that a lot of people think that my life inside my housebound bubble, living in a reasonably tight routine, that things couldn’t possibly go wrong, After all, the point of routine, is to keep things the same, but that still doesn’t stop them going wrong. It is the one thing, you can’t plan for, and no matter how well thought out things are, they will find a way of doing just that. If there is one golden rule I have found, if it can go wrong, it will.

When I woke up the other morning, after successfully having been to the loo that night without wetting myself, I was feeling good. So OK, it wasn’t the most earth-shattering reasons for feeling proud of myself, but it was enough to put a smile on my face. It wasn’t just that, it was because I thought that I have found a way of making it not happen. It was simple, don’t move quickly. OK, my quick might equal your slow, but by not trying to fly out of bed and stand up, rather taking it in slow stages, I stayed dry. When I woke, I took a minute to stretch my arms, take my sleep mask off my eyes, and gently uncover myself. I raised myself slowly with the elevator, stopping for a second or two every now and then, then slid my legs over the edge of the mattress. I made a point in sitting on the edge of the bed, letting everything inside me settle, then slowly stood up. Success, nothing happened, just as I hoped it would. Which confirms my theory, the sudden actions cause my insides, to suddenly squash down on my bladder, moving slowly avoided that happening.

Waking again at 7:45, found me with a smile on my face before, I even thought about taking my mask off. It was going to be a good day, I just knew it. Within 5 minutes, I realised just how wrong that was. As I was getting back into my wheelchair in the bathroom, I realised that my balance was off, not that unusual for someone like me, but it caught me unaware and I crashed straight into the wall, catching my funny bone, on one of the units. You don’t need me to tell you how much that hurts. A body full of Morphine somehow doesn’t change these things. Somehow, I always thought that it would, but injury pain when it first happens, feels as it always has. It would be nice if there were just one tiny bonus to all of this, but if there is, I still have to find it. Having a wheelchair, also turns into a disadvantage at this point. There is none of this walking away holding onto your elbow, comforting yourself, no that arm has to work and to do so straight away, pain or not. My smile was gone and I was now heading for my PC, feeling a touch sorry for myself.

As soon as my PC came to life, I searched through the overnight activity on my different accounts, only to find there was a two-hour gap of nothing apparently happening. Twitter was down. As everything I do in the first two hours of my day, is centred around Twitter, this was one major issue, far more than you might think. Try as I might, it is incredibly difficult to get my brain to accept something isn’t working and that I need to do things in a different order. It quite simply doesn’t like it and won’t do it, for more than a few minutes. My mind just wouldn’t accept what was going on and do what anyone else in the world would, something else. I checked this, that and everything, not once, but every few minutes, as I just couldn’t sit here and do the logical thing, write my blog. My brain was screaming at me after each sentence, “just check again, it might be back”, of course, it wasn’t but I kept checking. I was on the verge of going crazy and I was clearly achieving nothing. I literally had to leave my PC and do something else. luckily, I could have breakfast and take my meds, no computer needed there, it was a little early, but it got me away from this infernal machine.

Once I had eaten my Granola and used my Nebulizer, I fetched a small bottle of Ginger Beer from the fridge, Adam fills them for me daily, as it’s easier for me than fighting with huge bottles and fragile glasses. I was sat in my chair, looking at the tablets he had left out for me to take, and instead of putting the pills in my palm, I poured Ginger Beer into it, not stopping until I actually saw it pouring onto the floor. I had just sat there looking bemused by the liquid pouring off my hand, I had developed the reactions speed of a slug, and even then, one that was asleep. Once I had actually, taken what was happening, cleared up the pool on the floor and swallowed my tablets, I moved on to my inhalers. In the last couple of days, I have been having problems with a new inhaler that had simply turned up without warning. I have now for several months been on Seretide 250, which is a normal every day looking old fashioned inhaler, that people have used for years. What arrived was Seretide 500, a diskus accuhaler, something I had never used before. The name sort of describes how it looks, more or less like a mini discuss which a sports person would throw. You simply swivel the outer case around and it reveals the mouthpiece. The instructions were obvious and I thought nothing of it until I tried to use it. Every inhaler that I have ever used in my life, and there has been an array of them, have all made a sound when you are inhaling the medicine, or once you have completed the dose, this one is silent. On top of that, they have all had a flavour, or in the case of a powder inhaler, a grainy residue, this had neither. There was nothing to confirm that I had taken a dose or not, or if, the thing was actually working at all.

I have to admit, that on my first use, I tried it three times but, heard and tasted nothing, that’s how convinced I was that it wasn’t working, I took the chance of taking three doses. We decided, that Adam would take it back to the chemist, to change it as it was in both our opinions, clearly not working. He did this after work yesterday and when he returned, he had with him, exactly the same one. Apparently, it was working perfectly. They had loaded it just as we did, then tapped it on the counter and the powered fell out. Neither of us were convinced, as the point still stood, no matter how hard I sucked on it, I tasted and felt nothing, surely there should be something, they just tapped the powered out, that doesn’t mean I can suck it out. Anyway, I tried it last night and I still wasn’t convinced, but stupidly, I closed it without tapping it on the counter, to see if any powder remained. So, I had to test it this morning. I hate to say this, but it seems to be working. I did just as it said, and then tapped it on the counter, to see if any powder fell out, nothing remained. I know your thinking, but that’s a good thing, isn’t it. Well not in my book, because now on top of a sore elbow, and a wet knee and a PC/brian that will let me do nothing, I was totally mortified by the fact I had sent Adam on a wild goose-chase and embarrassed by my stupidity.

It took another hour, for Twitter to return, and I was so far behind that I thought I would never catch up. Those who know me will realise, that meant that my frustration and stress levels were high. I was doing everything that I could, to catch up, but there was no way, that was going to happen. Worst of all, was the fact that I couldn’t keep my eye off the clock, every minute that ticked by, I saw and felt. Then the phone rang. It was Jake making his weekly call to check on how I was. He is the only friend I have now from my old life, we have been extremely close now for over 20 years and consider ourselves more as family, rather than just friends, and he was in one of his chatty moods. Normally, I love to hear from him, and I look forward to and enjoy chatting for as long as he has time for me, but yesterday, well no matter how I tried, my eye was still watching that clock. My brain is like that, once it has something set in it, it doesn’t give up. By the 15 minute mark, I was almost relaxed, we had been laughing and sharing stories and I knew, this was going to turn into one of hour long trips to the past. It was probably just exactly what I needed, but my body wasn’t going to play the game. Out of nowhere, my bladder was screaming for relief. I hadn’t even made it to lunchtime, and not one thing had been completed or had gone smoothly, other than breakfast. Even Twitter still wasn’t working properly, it was back, but not stable.

Yesterday, life and my body, were conspiring against me, as the day went on, it got no better. Small things, but when put together in a chain, enough to drive me up the wall, and once there, I found raised pain, increased spasms and a headache from hell. So thank you life, as if it weren’t for your determination to thwart me in every action, I might have had a good day, you alone, turned my day into a living nightmare. It’s easy to just think that our battle is with our health alone. That is the picture that so many portray, that if they were just cured, life would be perfect. Sometimes, it’s just good to be reminded, life is a bed of roses, there are millions of ways for it to catch us out and when given the opportunity, it will.


Please read my blog from 2 years ago today – 20/01/2014 – Embracing the devil

That early start yesterday just pulled me down and down as the morning went on, I completed my blog and a couple of small bits and pieces, but just before 11 am I went to bed. I felt so bad I was at the point……