I’m gonna write a blog.
However, there’s a small chance I may be a bit pissed, so bear with me. I managed to nip out for an hour to say thank you to some lovely friends who were raising money for the MNDA, but being a lightweight, peri-menopausal, stressed, over-tired and the fact it’s 12 million degrees outside, has resulted in 1 prosecco and 1 beer going straight to my head. Pathetic.
I was literally an hour. Paul doesn’t like being left for any length of time, as he is now so dependent on me. No one else will do. No one else can bloody deal with him! He has always been a bit OCD but was able to keep it to himself and not let it affect anyone else. Well, that is still a part of him, but now he relies on me, and that means learning the routines, schedules, positions, and sequences he needs to adhere to, to make him feel happy. I had to cancel the carers because they were only doing the basics (which is all they are paid to do), but I knew Paul did not feel comfortable, so it’s now me. Sometimes I’m sober, sometimes I’m drunk. Sometimes I’m nice to him and sometimes I’m not. But hey, he’s doing alright so far.
In fact, we’re now nearly a month past his predicted expiration date!!! He’s never bloody conformed. Ever. If you say black, he’ll argue white, and I’m sure that’s why he’s still with us. His mental strength is unreal. I would have caved by now, and passed away in a self-pitying, sorry state. But he’s not having any of it. He’s fighting.
I can’t explain the pain he’s in. Day and night. It’s constant. There’s no position he’s comfortable in. His (massive) head flops about all over the place and puts immense strain on his neck. He has open wounds on his tailbone from the pressure of just sitting. Night-times are agony for him, and he is now up every 2 hours to move his joints. He has 2 sleeping pills and 20mls of morphine for bed and yet he still won’t chuffing sleep! How is that possible? He’s a machine! I have ranted at him (in one of my over-tired selfish moments) that it’s like having a 7 stone fucking new-born. Piss and shit and dribble and whining, and so fragile he might break at any time. The only noise he can make is a distressed moan, which keeps me in a constant state of panic that something awful is happening, when in fact all he wants is his arse scratching.
But it’s the least I can do. After enduring one of my exhausted outbursts of tears and despair, he told me (through his machine) that he would understand if he had to go into a care home. My goodness. Never. I may be on the edge of a nervous breakdown, but I would never do that. What I am going through is nothing like what he is going through, which soon snaps me out of my own selfishness.
So, as I was saying, he agreed to me going out for an hour (even though I knew he was afraid). I made sure he’d had a piss and settled him in his chair with strict instructions not to move and get himself stuck God knows where (yes, he still tries this. Stresses me the fuck out.) In my drunken state I have attempted to tell you where we’re at. It’s like waking up in a nightmare every single day and it’s fucking hard. I am watching my husband being tortured to death and there’s not a damn thing I can do about it.
There you go. I’m bored now, and I’m sweating my tits off in this ridiculous heat. I’m off to sit in the freezer. With a glass of something.
I’ll keep you posted…