Arms and legs or nothing

Some things in life are simply designed to drive us up the wall. Others do it only to you despite the fact everyone, but you, on this entire planet seems to have no problem what so ever with them. There are even a few that are even more clever than that. They wait for the days that you just don’t need it and then conspire with the invisible god of fate to tie you up in knots. I have fallen out with the keyboard. I am typing just as I have always done, but it, it is producing letters in odd orders that bear no comparison to what I am typing. So OK it could be me, but it doesn’t feel like it. From the first keys that I hit this morning in response to a tweet, I have had what I might just admit to, dyslexic fingers. I swear that I am spending more time hitting the backspace and trying again than I am moving across the page. Oops, it’s not a page is it, it a screen and a damn good thing it is as well, otherwise by now I would have destroyed a good-sized forest and it’s not even 9 am.

It is going to be one of those days. I knew it within seconds of hearing the alarm clock as I missed the button several times before shutting it up. Even Adam was questioning if I was alright and he was still putting on his dressing gown and we had shared only four words between us. Maybe, I managed to get even those wrong, or they came out more stumbled and mumbled than my usual “Good morning”. I had a perfect nights sleep until 5 am when I woke abruptly with pain right in my chest. Normally, I would get up as quickly and quietly as I can, but I couldn’t actually manage that one. When I reached the position of sitting on the edge of the bed, I just didn’t feel I could move any further. I had to sit there for what felt like ages, but I suspect was no more than a minute. The pain just wasn’t allowing me to move any further, well not until I had taken a few breaths and settled myself as to what was to follow, standing up. The last few days have been nothing but sudden blinding pain, headaches and lethargy. This isn’t like me, fatigue, yes, lethargy, no. I really just can’t be bothered doing anything. Even on my worst days, no matter how tired or how much pain I am in, I normally still have that voice inside me that says “Come on, there are things to do and times running out”. For the last few days, all it says is “Do I have too?”. The desire to go into slouch mode is huge and I am having to fight it all the way. Just getting off the edge of the bed to head through to the kitchen, felt as though it was a trip up the Igor. I had to sit and gather myself up before launching myself onto my feet and towards the door. That pizza has a lot to answer for.

So OK that was flippant and probably an unfair weighting of blame on the pizza, but the last time I felt right was on Saturday, the day I ate it. My stomach triggered bad spasms in my diaphragm and they triggered the intercostal ones and from there the rest of my chest took it as permission to make life hard. My breathing has been all over the place and that, of course, brings an array of problems with it. The truth probably is more along the line that it is just wearing me down and has done so with speed for some reason. The complexity of life once you have a gang of conditions, all vying for their chance to be king shouldn’t be underestimated. I have to admit that breathing is actually one of the things that I am finding rather tiring. I find myself so often taking tiny shallow breaths as a way of avoiding the pain that deeper breaths cause. Those tiny breaths taken by what feels like just the upper section of my ribcage, cause pain of their own especially in my sides and bronchi. There is only one way to reduce it and that is to take control and slow them down while trying to also take them just that little bit deeper into my lungs. I don’t know which is worse, out of control fast or having to think about every breath that you take, as both of them seem to wear me out. It was the pain right across the top of my chest as though I was in a vice, squeezing me from either side and pushing in from the front, that woke me during the night. I could only guess that I had been taking shallow breaths for a while, but after just a few more normal ones, I was on my way to the kitchen via the bathroom, of course, my bladder never misses the opportunity of a night time visit.

Crossing the hall was somewhat more of an ordeal than expected. Once more my left leg just vanished, if it hadn’t been that thanks to the warning I keep getting and that I now wall hug, I would have been on the floor. Instead of falling I landed up leaning against the small strip of wall between the hall cupboard and front door, both on my right side. I stayed there standing like a flamingo, but in a worse state as they have the option of lowering the other leg, mine was already there but of no use. It never seems to take long to return, but while I was standing there, I realised that it wasn’t just my leg, it was my arm as well. Something must have registered in my brain, as I had taken hold of it just below the cuff line on my upper are with my right hand, but my arm didn’t feel it. It was while I was running my hand up and down it desperate to feel something that it suddenly returned. Difficulty breathing or not, I was left with a great desire for a cigarette, understandable to even those who don’t smoke I am sure. I spent most of my kitchen time just digging my nails into both my arm and leg, desperately trying to find something that might tell me why or where the trigger was and just what condition they had been left in. I had noticed before that my arms do go when my legs do, the reason I believe why they crumple whenever I have had the need to crawl. But it doesn’t bode well for using my wheelchair, as it’s meant to be my saviour, not just another way to find myself stranded. Just like my leg, my arm felt wrong but appeared to function perfectly well. To say that they felt wrong isn’t helpful to anyone, but that is all I can say, it was wrong, somehow weak, not quite there or quite themselves, which when stationary is an odd thing to try to explain.How does you arm or leg feel right now? Limbs are just there, you don’t feel them, they just exist and feeling only appears when triggered. Yet mine were doing nothing and yet they felt wrong. I lay in bed running it round in my head, finding no sense or logic as I drifted back to sleep.

I bought myself something yesterday, I had looked online several times for one of those monitors that you can clip onto your finger that measure your oxygen saturation levels. Every time I had looked in the past they were well over £100, something that I just couldn’t justify for a gizmo that is only to put my mind at rest. Yesterday, I found one that I could afford, so it is now on its way. I decided to go for it as it will probably be one of those things that won’t just put my mind at rest but also Adams. I actually found it while I was looking for some of the things that I think I will need once I have to start using my wheelchair. When I bought the monitor, I also bought some wide necked bottles that I found that didn’t only have a nice easy grip top but attached to the top is a wrist strap. It was actually the strap that convinced me to buy them for two reasons. Firstly, I am notorious for dropping bottle caps, something that from a wheelchair isn’t easy to do is to pick up anything off the floor. I already have in under the kitchen sink a long grabber stick, the wrist strap will be really easy to grab hold of if it is on the floor. Secondly, it means I have something that will make it easy to attach in some way either to me or my chair. I need to be able to do that, as I remember losing many cans of coke when I was working because I had them on my lap and they rolled off. I learned to clamp them between my knees, but the bottles will be softer than a can, not to mention cold, so the strap gets round three problems in one.

I have also found the perfect bag for my needs. I haven’t bought it yet as I want to see if I can find something cheaper as just over £30 seems high to me. Having said that, not only does it have soft pockets, but it has a pad that means it will sit on my lap and stay there, like one of those dinner trays. That is, in fact, the reason that the pad is really there, as one side of the bag is a perfectly flat wipe clean textured plastic, that can be used as a tray. It also has straps that will let me attach it to me or the chair and yes I could attach the bottles to it if I can’t put them inside for some reason. It looks perfect for transporting food, dishes and whatever else I might want to anywhere in the house and when not in use it could just hang off the chair for when needed. I have to say that I was impressed with the bad and I just wish that I had found it years ago. I lost count of the times when something like that might have been useful when I was working. Not everyone’s office had a desk or a table that I could get my chair under and leaning off a chair to write something isn’t that easy. A laptop desk would have been perfect and I can see it would also be perfect for using a laptop on as well.

I haven’t been up to it on the past couple of days, to perform the other wheelchair tests that I had thought of, but fingers crossed, I will be this afternoon. I might be wrong, but I am not sure at all that I will be able to firstly answer the outer door intercom, or that I will be able to unlock our front door. It may take a little of work to get around those two. I know for a fact that I won’t be able to open the front door fully as one of it’s bolts is over 7 feet of the ground, but that only needs to open on the days the shopping is delivered. Adam and I have discussed the switching around of kitchen cupboards that will need to be done, as yet, I don’t think he has realised that it is also going to be a great excuse for cleaning them all out. Well, there is no point just doing two of them when we could do them all at the same time. It is actually one of those jobs that have been niggling at me for quite a while now. This weekend is looking good to me.

Please read my blog from 2 years ago – 02/09/2013 – Yes I can!

Another day of a bit of this and a bit of that, bitty days always manage to get me mixed up and not really here or anywhere else. In other words I am going round in circles with no way of putting the brakes on. I thought one simple phone call and then on with what I have to do here, one simple phone call with…..

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