Battle Weary

I am really struggling with food at the moment or rather the lack of it. I haven't tasted anything other than toothpaste for 18 months now but for the last few weeks it's been particularly hard. Smelling cooking in the house and being near people eating aromatic food is really getting to me. In the scheme of things its actually fairly low on the list of losses; if I could regain something, speech, walking or the use of my arms would win every time but for some reason the inability to eat anything is frequently pissing me off. I am regularly tempted to get something pureed and attempt to eat it; how difficult can it be, I keep asking myself. But when I tried it a year ago, I ended up coughing and spluttering everywhere and it won't be any easier now.


The latest problem is waking up with mucus having accumulated on my chest, presumably from saliva being aspirated during sleep. My cough when lying down isn't strong enough to dislodge it , so I am worried that it will lead to a chest infection which would be seriously bad news. There is something called a cough assist machine which I guess I should investigate although it wouldn't help at 4-30am without someone to operate it. I have already given some thought to overnight care which I can't see anyway of avoiding when I start using ventilation, but it seems somewhat excessive at this stage. But this ineffective cough problem has been occuring for a week so I know I should tackle it rather than waiting until I get pneumonia.

My apathy for arranging yet more equipment and care is probably symptomatic of my often prevailing 'determination fatigue'. Being confined to inside the house by the cold weather doesn't help and the longer it goes on, the harder it becomes to make the effort to go out when the opportunity arises.
As I mentioned in a recent post, there hasn't been any dramatic changes this year and I imagine that the subtle changes aren't noticeable to anyone else leading them to think 'Steve's doing OK' and compared to the friends I have lost this year, I am. But life is far from OK, the immense effort to do anything other than sit and stare at the TV is slowly crushing me and the frustration experienced when eventually no amount of effort is sufficient to achieve something is soul destroying. Two months ago I would spend 45 minutes trying to turn on my side in bed, sometimes succeeding, others not. Now I have to lie on my back all night. I sometimes have to literally will my hand to move my hand 1mm to turn the wheelchair. But increasingly my carer has to drive me. It's so hard maintaining the will to fight when defeat has to be accepted constantly.

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