I’ve done it a million times before, well, it feels like that anyway, so I can do it again. I never thought that my life would turn at this speed, but it has, so all I can do is piece it back together and force my control on to it. So where do you start? What do you do first? How do you work out what it’s even going to look like? Well, you don’t do any of those things, not one of them. I know that sounds a bit nuts, how can you put your life back together, if you don’t even start trying? To me, that is the mistake too many people make, they try, they choose a point and they say “From here on in, it’s going to be different.” The truth is, it just doesn’t work that way.
Every time my body has destroyed me, the only way out of it, is to let it sort itself. There is no miraculous formula that sorts life, life has to sort itself, but we can help, we can put in place the structure and then let it grow. It’s a bit like caring for a climbing plant, you have to put the framework in place and then coax it to grow and cover it. What you do have to do, is identify the elements that will form that framework. For me, organisation has to be at the base of all of it. In little pieces, I have mentioned what is needed in the past few posts, but it’s all sort of muddled up and scattered all over the place, which is why I am still in a mess. My thoughts have been so wild and so all over the place, that I have been left no better off from writing them. Usually, when I write, it helps me to make sense of how I feel and what is happening, but it hasn’t been working lately, because of the speed that all the changes have been flying at me and because the rest of my life was all over the place.
So, organisation, you could ask that is my asking to the “where do I start?” question, I’m not. It’s a question that doesn’t need asking or answering, as it has already started. The instance my mind said “Enough is enough”, it began. All I am doing now is agreeing, and making sense of all those fragments that have been flying around in my head and appearing in this blog. I started my organising when I cleaned out my draws and bought new clothes to fill them. Clothes that were long overdue, as I have been wearing the same two pair of pyjamas or the two nightgowns and two dressing gowns for the last 5 years. Suddenly, I now have 6 pairs of trousers (all stretchy and comfortable to sit in), 5 long tops (all that cover me down past my hips, to be sure the bulges of towels can’t be seen), 12 pairs of sensible knickers( I used to so love my G-strings), 5 bra tops (not bras, they have hooks, these just pull on and off), six pairs of socks (toe to knee tight to prevent DVT) and two long flowing jersey cardigans, to cover up and hide any mistakes. Not one has a button, zipper or a catch, just easy access and exit designs, so I can dress alone, slowly, but alone. I haven’t had such a selection to choose from for far too long. In an odd way, they have been both the start of change and part of the problem in one, as I added something that makes life harder, I now have “choice” to deal with as well. That done, I cleared the wardrobe and created a home for all incontinence products, now piled up high and stored out of sight, but still reachable for both myself and the nurses. Both my bedroom and I, still managing to look anything but, hospital and patient. I have done everything that I can to preserve the “me” that was formed years ago, but accepting that I am no longer physically the person I once was, I’m modified if you like, but no more.
With my bedroom and my body now looking as normal as I can achieve, but with the allowances that have been forced on me, that leaves me free to sort out how I’m going to live. To live, I must have energy, something I have fought to work with for years, but I am now failing to manage as I once did. Energy is at the base of everything, without it, I am no more than a zombie who exists and that I idea, I quite simply can’t accept. Getting the balance between what I am supposed to do, to control both my bladder and my bowels and the amount of loss of control I can accept is a huge problem. I don’t have the energy to be going back and forwards to the loo every hour, nor do I have it to spend going to and fro to the kitchen, constantly collecting cold drinks. Yesterday online I bought a mini fridge, it is now sat in the living room, just one steps from my computer. Every morning, it will be stocked with bottles filled with my drinks, plus some cold water and a glass to take my potassium tablets with. There is a small shelf at the top, where once I have had my breakfast and morning meds, I can prepare lunch and it can sit there waiting for me. On normal days, this should be enough to limit my need to run around, other than going to the loo.
It may be the first day of the fridge being sat here, but it is already making a difference. Firstly, because I no longer sit nursing the last inch of fluid, as I have no energy to fetch more. I can now drink freely, something that will hopefully help with my bowels. In the past, my fluid intake has been greater in the evening when Adam fetches my drinks, now it should be constant, tapering off at night, so my bladder isn’t so full before I go to bed. Three things cured by buying one gizmo. I refused today to have another supplied by the NHS, the district nurse offered me a commode, I’m not ready for that step yet. Admittedly, it would remove the other issue, but then would come the emptying and I can’t ask Adam to do that before there is no other option.
I have also sourced foods that I like and can be prepared either by me or by Adam on the two days that just now I need his help. On Mondays and Thursdays when the district nurses are here, I use up so much extra energy with the whole process of the enema and the extra trips back and forwards. I am hoping that in the process of the next couple of weeks, that I will become more organised and that I will get it all working smoothly. So here is my framework. I’m fed, clothed, watered and rested as much as possible. Today, I have brought all the pieces together, I have the roots of my new life in place, from here, hopefully, the rest will grow and life will become easier, not just for me, but for Adam as well.
Please read my blog from 2 years ago today – 15/07/2014 – Passing the night
I used to get a magical half hour when I first woke up, I always thought it was partly because I take time to wake up, that my nerves didn’t react the same after lying partially dormant for so many hours, but I would be able to get up, go to the loo, fetch my glass of coke and come through here without pain. Even when I sat down I couldn’t feel burning, or pins and needles, just a strange fuzz, as though I was……