More than “Me”

It’s one of those days, a day when I know I have things to do and things that need doing, but all I want to do is go to sleep. Keeping my eyes open is hard and if it weren’t for the fact, I’ve felt like this a so many times before, I might be sitting here wondering why, but I’m not. I know that fatigue is very much part of my life, but yesterday, just like a couple of times last week, I had more than one visitor in the same day. I have known for as long as I have been housebound, that having people here exhausts me, but when I land up with a series of visitors, it totally drains me. At 9 am, the incontinence nurse was here to measure the amount of urine left in my bladder following going to the loo. For the second time, it was borderline, just below 100mls the level where it starts to become dangerous if not cleared. Which means she wants to come again next week, for a third reading. At 11 am the district nurse arrived. She was here for about half an hour and we have agreed going forwards, to have just two visits a week, to see if we can get my bowels into a routine. They will be here every Monday and Thursday, as, without a doubt, three times a week is far too much. My body is simply not responding to the more aggressive path we have been trying.

If all that wasn’t enough, the podiatrist showed up just after 2 pm, but she at least was far happier with my feet than she has been in the past. Since I have been having the carers in to shower me, they have also after the shower, been putting cream onto my feet to stop the skin build up I had in the past. She now wants me to ask them to once a week file my nails gently, to help stop them from getting as long as they have been between her visits. I forgot to mention, that of course, Adam came home for lunch, so my entire day was filled with people coming and going, it is really no surprise that today, I find myself floored. For the majority of people out there, all that would have been nothing. For me, it was like being in the middle of a shopping mall and every single person wanting to speak to me. I have lived so long seeing not one other person than Adam, that it felt like bedlam. I have to admit that I feel better about the next few weeks, now that the district nurses are only coming twice a week. Somehow, just having people here on four separate days out of seven, feels far less invasive. I don’t know why one day less makes such a huge difference, but it really does.

There is one other thing happening today that also always makes me sleepy, it’s a really odd one as well, and I think it has more to do with wanting to run away and hide than actually going to sleep. I am having problems with faeces incontinence. It hadn’t happened for a really long time until last week, then suddenly following my enema on last Friday, it returned. I spent the whole of Saturday, going to the loo and finding yet again, I needed to clean myself, today is exactly the same, but the quantities are larger. Having to keep going back and forward to the loo, just in case it’s happened again, isn’t making any of this any easier. I have been living with incontinence, on the small scale, on and off for the last few years. Suddenly, wetting the bed a couple of weeks ago was tough. There is a huge difference between wetting yourself slightly because you stand up, and wetting yourself when you’re asleep and not waking. The follow-on events, which there have been two of, well they have been so much easier, simply because I can clear it up and dispose of the evidence myself. Yes, I can clean myself up when I mess myself, but the fact I don’t feel it happening, well that worries me. How long will it be before it’s not just a small amount and I lose control totally? Even as it is right now, it’s just one more thing, I can do without. I never thought that I would say this, but I am so glad that I am wearing this nappy, that way, if it escapes my buttocks, it won’t go very far.

It is really beginning to feel as though I’m not allowed to have what anyone would call normality. Right now, I would just love to ask Adam to call all the people who are coming in to help me, and tell them not to come back. I know that would be a stupid thing to do, but I desperately want some peace and quiet, and I don’t see it ever happening again. It’s not as though I can ever ask for a holiday, as holiday or not, we all need to shower and go to the loo. This is my life, not just for a couple of weeks, but forever and I’m only now really beginning to understand what the true impact of that is. I have been so locked up in the emotional side that the reality, well it had somehow slipped past me, I was too busy feeling sorry for myself.

I have never really seen me as a “me, me” sort of person, but that is exactly what I have been lately. I haven’t been able to see past that emotional “Me” and to see the bigger picture. The practicalities of my life are never going to be the same again and nor are they ever going to the same again for Adam. Every tiny thing in my life now affects him. His home and his life are now invaded by people four times a week, because of me. OK, on three of those, he is at work, but he still knows that there are people here. Knowing Adam, he will be worried as well that I am dealing with it all with ease, and I haven’t thought about his needs in any of this or his feeling. It might all be happening to me, but it’s happening to him as well. It is easy to say that all of this is out of our control in many ways, but just because it’s the way life is, doesn’t mean that we have to like it, or be happy about all of it. Somehow, I have to find a way of making all of this easier on him, as well as on myself. This is going to take some thought and I guess some time as well.


Please read my blog from 2 years ago today – 13/07/2014 – What was that?

I lay down last night with nothing in my head other than to simply go to sleep, I was so tired and the muscles in my limbs had been screaming at me all evening, sometimes I am actually grateful that I no longer have taut stomach muscles, as it is only the muscles I put to constant use that ever ache like that. It always takes me a couple of minutes to relax and let my body settle on the mattress, even……