I am having one of those days which makes the big decision mentioned in the previous post much easier. I am being forced by the care agency to abandon the standing hoist and have 2 carers and a full hoist. This isn't just inconvenient it fucks everthing up because there can no longer be any flexibility on when I get up, go to bed or when I use the toilet, everything will have to timed to when the second carer is here. My remaining leg strength will deteriorate rapidly without the excercise of the standing hoist. It is entirely unnecessary but if they insist on it, I have no choice.
I have had a crappy cold and although it's getting better I am still snotty. I am frequently choking on saliva and the subsequent coughing results in a torrent of snot from my nose, saliva running down my chin and neck and me sliding down in the wheelchair to an uncomfortable slumped position. This invariably occurs 5 minutes after the carer has left. During the coughing I usually bite my tongue and inside of cheek causing them to swell, ensuring that I continue biting them for the rest of the day.
Then there are computer issues. The boys computer is overheating and its power supply is tripping from being overloaded. The other computer has suddenly stopped recognising firewire devices so we can't capture video footage for editing. Apparently it's a common XP problem but nobody has a solution. These problems are beyond eyegaze controlable remedies and the guy who I occasionally get in is permanently tied up at work.
I feel like throwing in the towel, everything is so f***ing difficult
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7 comments:
I know how you feel Steve: bloody computers - they drive me to distraction too!
RV
It must be horrible when everything goes wrong and you`re not feeling well to boot- hard to cope and be positive at the best of times, I`m sure -I hope your cold eases up soon Steve -sorry I can`t offer any advice either with computers-bloody useless with them to be honest !
F%$£ing computers. I think of you whenever my computer behaves like a dinosaur. I hate it when they just dont do as advertised. if you cant sort it out with your amazing degree of knowledge that must be so unbelievably frustrating. I cant think of a single reason why you would take the short cut out rather than having the tracheostomy. The boys will want you to share their experiences for as long as is possible. That note says it all. Keep fighting please. You can always throw in the towel after youve tried the tracheostomy but at least then its an educated decision based on experience. At least until the cold has cleared before you make any decisions. Viruses and snot clog the mind.
XX
Steve, I'm so sorry; the cold must be bloody awful and the bitten cheeks even worse.
Computer issues for you must be SO frustrating, and you must feel useless.
But, the cold won't last forever and the computer guy will be back soon.
You MUST asfor 24hr care though !!!
Re the hoist ....remember what I said last week? I haven't been allowed a standing hoist at all and am still perfectly capable of standing for 1-2 minutes ...b******s!xx
Just when you thought you had enough problems to keep you fully occupied then IT pitches in to twist the knife. I can only repeat what the others have said- things will be a little better at least once your cold goes.....
In the meantime I am sure you know others far more capable of sorting the boys computer out for you, but I'd be happy to try and lend a hand if it will help? Let me know.....
Why can't you use the hoist YOU want? I don't understand how the agency can force this, if it is not what you want. Hope some of your technical friends have helped you out now with your computer problems. Keep fighting Steve. Anna P
Sorry to hear about the crappy complications. If you explain about deterioration they might get that?
Hope someone can help with the computer stuff, that at least sounds solvable!
Hope the cold goes soon, running snot 's not much fun...
Love to you all,
Emma
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