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……

10 thoughts on “More than “Me”

  1. Sounds like you need to accept the changes. Acceptance is the hardest thing. Life is never the same, it’s always evolving. Once the shit hits the fan life is never normal again. Just a different kinda normal. Your sucks more than most. Sorry life is so shitful for you right now.

    Liked by 3 people

  2. I had to take care of my husband the last year of his life before his death from brain cancer. I had taken care of him for 18 months right before we married when he had melanoma that had spread. He survived that death sentence, only to succumb 23 yrs later. Brain cancer causes all of your symptoms, only on a much more extreme time table. It is absolutely exhausting to be the caretaker, but when you love someone, you don’t mind helping them in any way possible!
    Unfortunately, now 13 yrs later, I find myself in more of your situation with no one here to help me. My daughter has finally taken over my finances and everything connected to that! She has also always been there to take me to the hospital for my occasional tuneup! But otherwise, she is a very bust CPA and can’t be there for me day to day. I also don’t want her to have to be. She is married with her own life. I have realized that my decline, unfortunately, is going to be much longer than Richards, and I am going to be doing most of it alone. Hate that this is now my life. Oh well. We have to make do with what we are given. I am grateful for your blog! Really helps to know that even though I am alone, I’m not really because I have you and others to figuratively lean on!

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    • There are so many of us in a slow decline that will be here for you, to show you support and to listen. I know that that doesn’t come close to having someone with you to help you and keep you company, but we are here, all you have to do is reach out and you will be answered. I have found writing a huge relief and an even bigger source of support, along with twitter, my network has become huge and I wouldn’t be without it. That is the beauty of the age we live in, we have at our fingertips millions of people in just out situation, but we all have to be proactive while our energy allows, to build that network. Imagine our lives a hundred years ago, it doesn’t bear thinking about.

      Take care (((Hugs)))

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    • I would just like to echo Pamelas statement of a lot of us here for each other. I know we can’t literally be there with each other but sometimes for me this is a much better way to communicate and be comfortable with others. You don’t have to worry about your suroundings being neat and clean, or your person ! We just all have one another to lean on rant to, cry, bitch or whatever? And no one gets angry at anyone else.No one says we aren’t trying hard enough to do for our selves. Or they better not ! May I ask what your health problems are?

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