For those of us, like me, who need a minimum of 8 hours of sleep a night, this type of change that has been thrust upon us is very challenging.

Please don’t misunderstand me – I love Colin, and am eager and happy to be able to help him. The only problem is – when I am tired, I become a thunder cloud. I switch between being weepy, snappy, grumpy, unreasonable, irritable, and thoroughly unpleasant. But this is not new. I have known this all my life, yet somehow, every day it takes me by surprise again.

There are so many things we still need to learn, new ways of doing things, new not-feeling-wells that we need to gauge, and so many other tiny things that I need to understand, watch for, measure if they are medically significant, or learn to ignore. The problem is – what if I ignore the wrong thing, and it leads to dire consequences? There are a few things that could potentially be extremely serious, and I also have to learn to trust Colin completely because i cannot possibly feel how he feels, and I need to learn to just calm down. I know he will tell me if he feels unwell, or he feels he needs some medical intervention, but I also know that he sometimes lets me sleep instead of waking me up and asking to have his sleeping splints and sleeping mask put on, or his catheter bag emptied. I know he tried to leave me as long as possible, and this is so kind, but I also feel that sometimes he does so to his detriment.

There are a few practical things we can put in place to mitigate some issues, but I also need to learn to not have to be in control of everything.

I need to learn a bit more self-care so that I can proactively manage the situation, and it is only in looking after myself that I can possibly be any use to Colin. I know this in the rational part of me, but my heart struggles. I find I am disorganised, distracted, unable to concentrate, unable to find vocabulary for even simple things, and I am irritated. Beyond irritated.

Hopefully in the next few days I will be able to catch a few more naps, and be able to get back to fully charged mode. Please send the Sandman here if you see him. <3

One Comment

  1. Judy

    Take heart Janis , you are doing better than you think you are … I hope you get some quality sleep soon

    Love and hugs xxx

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