Seeking freedom

For weeks I have been struggling to make the way from one end of the day to another, without feeling under constant pressure. It felt as though I was chasing my own tail all of the time. So to be sitting here at 11:30 in the morning and to be able to say that I have done everything that I have to, and I even spent the last hour playing games, it seems unbelievable. I can’t even start to explain just how it makes me feel, as I now have time, to do what, I don’t have a clue yet, but as this is my third day in a row where I can say this, I clearly have time to myself again. Today, even the Nurse has been and gone, something that probably is helping tremendously as I’m not waiting. Waiting has to be the worst thing in the world for that pressure sensation to feed off. When you are just waiting for the doorbell to ring, time turns into the longest string of pain there is. I know that the district nurses don’t work to my schedule but must work to their own, so all I can do is accept things as they are, I just wish I could ask them to see me first every day.

Writing that paragraph just had me scurrying out into the hallway. When the nurse left, she did so with me still sat on the toilet. She had done just as I asked her too, to shut properly the inner hall door, which has a yale lock on it, and to pull over the storm doors so that when I returned to the bedroom to get dressed, should someone be out there, they wouldn’t see me through the glass panel, passing half naked in my wheelchair. When they left last Thursday, I totally forgot to lock the storm doors and just returned to the living room to get on with my day. About an hour later, Adam came home to find the house unlocked. He is always reminding me about security, to make sure that I don’t let anyone in on the intercom that I don’t know, and so on. The second I heard him enter, I remembered I hadn’t locked the door. To be fair, it was me who mentioned it not him, but I felt really bad about forgetting, not so much because of Adam, but simply because I had forgotten. I even told the nurse about it just before she went today, partly as a way to make me remember. I forgot again. The door is now locked and luckily, I actually also needed to return to the bathroom anyway, so no real waste of energy. Clearly, I need to come up with something to remind me, otherwise, well the future may well find the door unlocked more than secured.

In the early hours of Sunday, I woke needing desperately to go to the loo, but as soon as I moved myself to the edge of the bed, I knew something was wrong. No, I hadn’t wet myself, but I was in trouble in a different way, the tremors were back. I had been so sure that they were down to the lack of potassium that the doctor had detected, yet there they were, both arms and legs dancing to some mad tune of their own. As I sat there in disbelief, it was clear that my body was alive in its own mad way and that getting to the loo was going to be interesting. When my arms are dancing like that, I seem to find it hard to push my chair in a straight line, bumping into doorways is a standard issue. It was just like I had jumped back six weeks and I feared that it was all starting all over again. I went to the loo then headed to the kitchen, not just to have a cigarette but to spend a little time, just gathering my thoughts. Sitting there made it totally clear that my body was dancing wildly, and I was feeling terrible as well. Despite that, as I sat there I was also finding it really hard to stay awake. Sleep was drowning me and body dancing or not, I needed to return to bed.

I woke on Sunday morning to the alarm, still exhausted but with a body that was at ease and without the twitches. I looked at the bed, but apart from the fact that the duvet was all untucked, every sign of my night’s activity was gone, but even Adam noticed that I was tired. I was a lot quieter than normal and holding on to a great desire to return to bed. I can’t help wondering if my arms and legs had been active all night, as my limbs were both sluggish and heavy, just as they are when I have done too much during the day. Whatever had been behind the tremors, it had gone during the day. Today, once again, I am tired and my limbs are again heavy. I am beginning to wonder if the potassium really was behind the tremors at all. Yes, I think it aggravated them and made them more active during the day, but their antics the other night has made me aware of them again. It’s hard to tell what is going on, but as always, there is nothing I can do about it and all I can do is wait and see if they are going to happen during the day again as well.

Even though it is Monday, Adam isn’t coming home for lunch, that is unless he wants to. This is another thing that my new mini fridge has brought to our lives, Adam has his freedom again. My lunch is sitting waiting, all prepared by me this morning on the top shelf. It makes me wonder if with some thought, that there might be some other gizmo’s out there, that could change things just as much. I know that he likes doing things to help me, but while we can, I really do want to give him as much help and freedom as possible. We had a taste a month ago, just how dramatically our lives can change, overnight. It took us a month to sort it out and this time, we were lucky that there were ways of making life still work. We might not be so lucky the next time. Clearly, this is the time to look for those answers, before the problems appear. There are things already that I can see as minor issues, that could quite easily turn into major ones.

The biggest one is actually being caused by one of the answers to my incontinence, how do I manage to put the pads on and pull up my clothing, if my legs get any worse. Right now, I can still stand long enough to manage it, but what happens when my legs get worse, which they will. I can pull up my knickers and trousers without standing fully, by taking the strain on the grab rails, but the pads are fiddly. They need holding in place with on hand while standing, then using the other one to ease my knickers over them. Even then, I often need to twist and pull at them, which can’t be done while sitting, otherwise, they twist and ruck. How do you do these things when you can’t stand at all, or for less than 30 seconds? If anyone out there knows the answer, please tell me, as I have been thinking about it a lot, and I can’t find it in my own head at all.


Please read my blog from 2 years ago today – 19/07/2014 – Able and willing

I’m not quite with it today, my mind is tied up with one of Twitters strange blocks and like any puzzle I come across, I just have to pick away at it until I find the answer. I have always been the same, I hate anything that I don’t fully understand, I suppose that is part of my insistence on understanding my……