One week on: Life support

I am beginning to think that I am never going to have a complete knuckle to my middle finger on my left hand ever again. On my first day in my chair, I managed to scrap a deep hole into it and almost every day since, I have managed to remove the scab. Other than that, I have to say that I am managing better than I thought I would this time last week. Although, I have made a discovery about my home, well made it isn’t really true, as I have always known just how uneven the floors are in this house, just not exactly how badly. I don’t think there is a single six-inch square that is in line with the next one. Everywhere that I want to stop, I have to put on the brakes as within seconds, one or other of the wheels will be rolling away and slowly turning me around. I am getting used to it, but it’s can be really annoying, especially when you can’t even get it to still long enough to put those brakes on. If you have never been in a wheelchair, every single inch or turn of a degree, is the difference between being able to do what you want and not being able to reach at all. Rolling away or being out of reach, really matters when you have a toothbrush in one hand and a mouthful of froth.

For anyone who is facing a possible future in a wheelchair, don’t buy a single thing for your home without first checking if it is wheelchair friendly. What I mean by that is simple, can you or you body or your chair knock against it without anything being damaged. Personally, I recommend strongly if you buy anything made of wood, which our house is full of, to also by some sandpaper. While you are fit, sand all those sharp corners off every horizontal and vertical surface to form lovely soft rounded ones instead, and include every door jam, frame and door itself in your home, as part of that project. I think in the past week that I have found every sharp corner there is in every room. You honestly don’t notice them when you look around and say to yourself this house is perfectly safe, trust me, it isn’t. No matter how good your steering, it is never as good when you are half asleep, or the house is badly lit because it’s night time. I am getting better and better at my sinuating dance moves around our house every day, but I know without a doubt, even if I do get an electric chair, there will be those stupid corners catching hold of me at some point. I know for a fact that it doesn’t matter how well you plan, there will always be things that catch you out, things you could never have planned for at all.

I woke in the early hours of last Wednesday morning with my leg outside of the bed. Nothing unusual there, but instead of my foot being on the floor, it was balanced quite comfortably on the front wheel of my chair. I laughed to myself and pulled my leg back in and returned to sleep. I had been parking my chair at night close to the bed facing in the direction I had entered the room, meaning I had to back out. It was convenient and easy and even when I found my foot balanced on the wheel, I thought nothing of it. Early on Friday morning, I woke once again with my foot out of the bed, but this time it was in pain and complaining. My foot was caught in the chairs frame and something was cutting into the top of it, although the sole of my foot seemed quite comfortable. My foot was trapped in the folding mechanism. How I had got it in there without waking from the pain involved, I didn’t have a clue. Once awake and in control of my actions, getting it out was easy, but it hurt, the chair couldn’t sit there, that was clear. Luckily there is space in the bedroom to put the chair far enough away so that my nighttime activities don’t involve it, but close enough that I can reach it with ease. Of all the things I thought I needed to plan, what happened when I was asleep, was nowhere on the list at all. How we plan for the totally unforeseeable, I don’t have a clue, but I guess it is all part of the fun of chronic illness.

On the downside, my hands and arms are really showing the strain. Most people think that it is your arms that do the work. To a certain extent, that is true. Your arm muscles take the strain of those open big pushes that propel you at any speed or in a straight line. It is your hands that supply the motion when it comes to those more delicate actions, something that there is a lot of requirement for when you’re in a normal house. All my finger joints ache for ages after even the shortest of trips, from one end of our living room to the other. If I leave this room and venture further, by the time I come back the pain has spread throughout my hands and into my wrists. Once the end of the day has appeared, I don’t really want to use my arms or hands any more than I have to. I keep finding myself sitting with them sort of limp and doing a good impression of two wet pieces of string, sort of dangling there and useless. I have found myself by the time my last round of meds comes around, sitting on the settee looking at my chair with dread. That trip to the bathroom to clean my teeth after taking my last inhaler just fills me with dread and there is a huge temptation to just not bother. I know that would be stupid, but it has become a daunting task right in the middle of what should be a relaxing evening.

I am glad to report that I have settled onto my new meds. My suggestion when I first started on them that it might me be rather than the drugs, turned out to be true. I didn’t take any chances for the first few days after my heart rate went nuts, but once I was used to the process, I brought them gradually back together. It is now two hours since I took my morning dose and my oxygen is settled and 93 and heart at 87, neither can I complain about, though I was hoping that my oxygen would have improved. My thought that I was getting myself wound up about it all appears to have been spot on. The odd thing still is, is that I didn’t feel wound up about it at all, more pissed off if I am honest. I actually timed it all the other day and just the whole process of taking all my drugs, inhalers and cleaning my teeth then putting everything away again has stolen 35 minutes out of my already diminished day, rather than the norm of about 5 minutes. Another of those things that you can’t plan for. I don’t know why, but I never thought that taking drugs was something that would eat into my day, clearly that idea was another that was totally wrong. It is another of those things that no one ever prepares you for, the fact that to just stay alive, that you are going to have to spend time on different treatments daily. I doubt there is a single person out there who ever thought that part of their day would be spent connected up to a machine. A machine that needs setting up, cleaning and dismantling every time you use it. My life has been eaten into already because I do such a great impression of being in a coma for 13 hours of each and every day. I now see that the truth will be that of those 11 short hours of consciousness may well be diminished further and further.

Life is an odd thing and seems to just keep getting odder and odder as time goes on. Maybe I have reached the point where even trying to plan what will happen next, or what I can do to make it better has come. You can only plan so far into your future and forecast so much, eventually your health does overpower even the logic of trying to predict it, as there isn’t any logic at all now. I haven’t been able for years to plan even today and at best had to live life just within a structure, knowing the milestones ahead of me. I think that’s was what I was feeling the other day when I said that my wheelchair was a symptom of my health. It’s a symptom along with the nebulizer and everything else that I have reached a point where my health has finally taken over every aspect of my life. There isn’t a single element that isn’t aided, or an action that isn’t supported, without them, it would be only a matter of time before I ceased to be. And finally, I have said it in straight forward words. Facts are odd things they sometimes have a lot of different approach roads before you find the most direct and simplest one. It isn’t just Adams having to help me and do so much for me, or the wheelchair, or the equipment that helps me to breath, or all the meds that I have to take. or the pancakes that keep my bowels moving, or even the catheters, that I know I should use daily but still refuse to and glare at me from the cupboard, it is everything, all of it in a oner. My actual life force can no longer exist without a web of support and that’s what is eating at me. What happened to just living? How did I land up here? How do any of us?

Please read my blog from 2 years ago today – 21/09/2013 – Small and irritating

It’s really early and I do mean really early, I actually don’t remember when I was last up at 5:35 am, but I woke up aching all over and couldn’t find sleep again, so here I am. I can’t believe that only a handful of years ago I used to be up much earlier and I would have been in…..

2 thoughts on “One week on: Life support

  1. Oh, you’re scaring me about my future, and I wish that there was something I could do for you. While you visited my COPD page, and there are similaritiesbin the breathing portions, I’m just learning that you have MS.

    I have no experience with your situation, beyond the “disease fatigue” we all suffer from our various ailments from time to time.

    I hope you find a way to see the laughter in the daily frustration, and that things go into remission or reach a more sustainable vs. aggravating plateau. Please take care of yourself during this difficult time.


    • For me, there is no remission, only variations in the speed that my health goes down. If you hang around or read back some of my earlier posts you will find that happiness isn’t an issue in my life. Right now, I am just coming to terms with some major changes in my life. Every new change takes time to settle your mind to and time to get used to 🙂


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