Rewriting life

I dissolved into a total mess. The tears were not running, but pouring and I had no way of stopping them. I think that it was just something that I needed to do, that point had been crossed and everything had become too much. I didn’t just cry for a few minutes, I cried right through the day whenever anyone spoke to me. The district nurse was the first to see just how screwed up and exhausted I really was. It goes to say that I chose not to have the enema, not just because I was whacked but I was also very aware that my body didn’t have a need for it. If this week is anything to go by, I think twice a week is more than enough, which is exactly, if you remember, what I thought before we even started. We all know our own bodies and I probably better than a lot.

Next, it was Adam. Yes, I know he is the last person who deserves my letting rip, but he phoned to say he wasn’t coming home at lunchtime and that triggered the tears. For once, I really needed his help. I quite simply didn’t have it in me, to prepare and ferry my lunch, meds and so on, back and forward. He set off for the house straight away. He hadn’t really had a reason for not coming down the road, just a case of him feeling lazy, so I didn’t feel too bad about saying “I need you”. As normal, he was only home for twenty minutes, but it was long enough for his legs to do the work, instead of my arms. Having a wheelchair doesn’t make things any less exhausting than having to use your legs. If and when I get the electric one, well that will be a different story, something he totally agrees with. He hadn’t been in the door for more than a handful of seconds when my tears and his reassurance flowed, both deeply needed. As time goes on, my need for his love and his arms around me, are growing.

From my previous post, it must have been clear to all that we desperately need to change the way things are done daily. The tears, well they were just the final sign that I’m not coping and that all the change that has happened in the last few weeks, is getting to me, I can’t help but feel the real issue is organisation. My energy levels are being stripped daily because I am being forced into trying to do far more than I can. Yes, all of the people suddenly involved in my life, are here to help, but their impact on me has to be changed. Tonight, we are going to start by clearing out my wardrobe, this will supply me with space for all the inconstancy pads, wipes and so on that keep arriving. That will remove one pressure on me. It might be silly, but I really get embarrassed by the fact that they can be seen, yes, it is only by myself and Adam, but that is bad enough. The nurses left another pack of towels on the living room coffee table earlier and I hadn’t had the energy to move them and hide them. With no space in the wardrobe, they are slowly piling up on top of a lot of junk and I can’t see what is what. This morning, they all fell out onto the floor, more work, more energy being used that I just didn’t have. So tonight, we are going to sort that one, it may sound small, but it’s all the small things that have mounted up.

While we are sorting the wardrobe, we also plan to talk about my meals and see if we can work out menus that I enjoy and Adam can prepare, which might be the difficult bit. Adam isn’t exactly a cordon bleu chef, his cooking skills are somewhat basic, but that’s the food he likes. His idea of a good meal is a fish finger sandwich with salad cream, I wouldn’t even feed that to a dog, but we all have our own likes and dislikes. We need to come up with a mixture of things, either that Adam can prepare and I just take out of the fridge and eat, or he can come home and throw in the oven or microwave, that takes minutes to cook. There is also the issue that has been caused by my latest tablet. The potassium bicarbonate tablets, have to be dissolved and taken with or after food. The very first ones showed me they have to be with, as I landed up with heartburn. The first problem is the glass of cold water. We have removed the back and forward to the sink and cupboard issue, by putting a bottle of water in the fridge and a glass that will now live on the counter, but that doesn’t get it into the living room where I eat. Transporting a glass and my food in my wheelchair is just as hard as it sounds. To get around it yesterday, I prepared a snack to follow my meal, but that’s still more work and more energy, not mention more calories that I don’t need. Nor am I sure that I really want to finish every meal I eat, with cod’s roe and cream cheese, despite the fact I totally love it. Such a tiny thing has turned into such a huge issue. There just has to be a better answer.

For me to live, to feel as well as I can, I must move as little as I can. It is that simple, but achieving it is incredibly hard. None of us know just how much we move around until we are faced with looking at our every action. I used to have it down to a fine art. I used to be able to bunch up every trip that I took, to include as many things as possible, without retracing my steps, unless totally unavoidable. Add an enema, add a new tablet, add answering the doorbell, add letting people in and out, then do it all more than once in any day and all that planning, all that precision leaves more swiftly than you can imagine. Just how do I get it all back, as I want to live again, not spend the hours I’m awake feeling half dead.


Please read my blog from 2 years ago today – 08/07/2014 – Letting go

I lost just over an hour of my morning today and all because of two things, the TV and Adam. It is normal that Adam switches the TV on while I come up here and get settled for the day, but this morning although it all seemed to come on, nothing appeared on the screen other than blank blue. We talked about the possibilities and Adam carried out a couple of checks, but nothing happened, we even….