It appears that I’m not allowed a simple day or one where I could sit back for more than a few minutes and say I’m OK. I honestly don’t remember feeling this ill for this long ever before. It is now almost the end of week four and to be honest, I just keep feeling weaker and weaker, but on the upside, I think we might have an answer. On Thursday morning, I was sat here when the phone rang. The display told me that it was my doctor calling, something I really didn’t expect. The blood test results had already been called into him, as there is a quite serious problem. Apparently, my potassium leaves are really low, so low that they could be behind the twitches and tremors that I am living with right now. He also said that it is without a doubt the fault of the Frusemide, but clearly, I need to keep taking it, so I have yet another prescription with the chemist, and yet another tablet for me to take. I’m not totally convinced it will be the answer as the twitches and tremors started long before I started taking the high dose Frusemide, but I will try anything.

Speaking of the chemist, we actually had a delivery on Wednesday which Adam unpacked when he got home. Luckily, I was sat in the kitchen when he was doing so. I knew that the enemas were making up the bulk of the bag and there should be one box of tablets for dissolving my gallstones. Adam took out two very different boxes and was about to put one of each into my pill pots when I spoke up and stopped him. I knew there should only be one box and I was right, one of the boxes wasn’t for me, it had someone else’s name on it. It was clear what had happened, but mistake or not, it could have been one that made me ill, and the person who was waiting for it, even iller. I know that mistakes happen, but to me, this isn’t just a mistake, it’s dangerous. Adam called them the next morning and they have now collected them, but I still feel uneasy about the who thing. It has taught us a big lesson though, every medication that arrives here has to be double checked, not just put with the rest on pure trust because you never know what it might be.

When the continence nurse called yesterday afternoon, I thought that it would be a quick 10 minutes of form filling, another 10 of the standard questions, followed with a scan of my bladder, then a discussion about the types of towels and what would be best for me. Thirty to forty minutes top. Oh, how wrong I was. She arrived here at 3 pm, we didn’t get around to the scan until 4:10 and half way through that, the doorbell rang, Asda was here to deliver my shopping. With incredible time, just as I had dressed again he appeared with the first two crates. I had no other choice than to position myself sitting in my wheelchair half in the doorway of the living room, so I could see and talk to both the delivery man and the nurse, depending on who needed my attention. I found myself discussing the quantities of fluid that different pads held, the styles of each towel and what you wore with them, in between the drivers coming and going. It was totally surreal. Luckily, he was finished and gone before we got the one bit of her entire visit that I couldn’t quite believe.

From all her questions, she concluded that I would need one towel for the day time, a slim-line version of the ones that I have, which I will wear with a pair of mesh knickers. The hope is that they will stay in place, without the painful rucks and folds that happen with the one’s I have now because I jig and twist around so much. I will also get one pad for the night time, similar to what I already have. I questioned her about quantities simply as I was sure that occasionally I will wet one and need more than one for her allocated time slots. Her answer astounded me, apparently, you’re meant to keep wearing the same one. The whole idea of not changing the pad, seem more than wrong. Somewhat unbelievably, she said that it was better for my skin not to change it, as it held the moisture away and if you keep changing them, it dries your skin out. I know that this might be the way they think of it, but not me. The whole idea that I will be able to wake up during the night to find that my pad is filled with liquid, then simply go back to sleep, just doesn’t work for me.

This morning when I woke to find my pad dry, I realised I had the perfect opportunity to test her theory. It held with ease an entire mug of liquid but even after letting it sit for half an hour, there was still a slight moisture there to my touch, not wet as I remember babies nappies to be, but it wasn’t dry either. I suspect that it may well work just as she said it will, but the whole idea of sleeping with a full potty attached to me, even if it is none spill, just doesn’t settle my mind. When I told Adam what she had said, he too cringed and said no way. I guess I have found yet another one of those things that the medical world believe and the rest of the world, simply quietly says no way. We might just have to buy the odd pack of towels and possibly some moisturising cream for my skin, as the other way, is just not going to happen.

Please read my blog from 2 years ago today – 02/07/2014 – The path to the future

Today is a tired day, a day where sleep is had been in my mind from the second I woke up, which considering I went to bed an hour early isn’t good news. I am still slipping, all I want is the time to sleep and the time to just disappear. Today I have to have my shower, regardless of how I feel as tomorrow the MS Support Worker is going to be here. When the letter arrived a couple of weeks ago I thought…..