If anyone is wondering where I've gone, I'm in Wythenshawe hospital for a second night. Breathing assessment. First night was monitoring blood gas. I hardly slept. Tonight they expect me to sleep with the NIV on. I'm giving it a try but I think I've got much more chance of success at home. I've never been able to relax in hospital and I can't see that changing now.
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Thanks for checking in, Gary.
Yes, you're right - hospitals are difficult places in which to get quality sleep! Just get through tonight and you can get home to relax, catch up on sleep and get used to using NIV.
Love Ellie xDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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Originally posted by Ellie View PostThanks for checking in, Gary.
Yes, you're right - hospitals are difficult places in which to get quality sleep! Just get through tonight and you can get home to relax, catch up on sleep and get used to using NIV.
Love Ellie xEach day is made easier with a bit of humour.
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Originally posted by GaryM View PostIf anyone is wondering where I've gone, I'm in Wythenshawe hospital for a second night. Breathing assessment. First night was monitoring blood gas. I hardly slept. Tonight they expect me to sleep with the NIV on. I'm giving it a try but I think I've got much more chance of success at home. I've never been able to relax in hospital and I can't see that changing now.Janette x
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Oh Gary you should have said. Did think it was quiet.
Stephen had his niv brought to our house. We were shown what to do and he got used to it quite quickly. He was relaxed and fairly happy. We had a lovely technician we told us to call anytime.
Don't see the point in trying to monitor anyone where they don't feel comfortable.
love and hugs Denise xxx
when i can think of something profound i will update this.
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Thank you for all your messages of support. Home now with a mountain of equipment. I'm not trying the NIV tonight, I want to try and catch up on some sleep. Like Matthew said sometimes the awareness of MND is lacking even in departments that deal with a lot MND patients. They think that just because you can press a call button you're okay. They don't realise that if you have no voice and no mobility you end up worrying about losing your grip on the call button, because nobody comes to check.Each day is made easier with a bit of humour.
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Welcome home, Gary. Hope you get solid sleep tonight.
Originally posted by GaryM View PostI'm not trying the NIV tonight, I want to try and catch up on some sleep.
Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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I hope that you catch up sleep quickly Gary. It is hard to sleep in noisy bright hospital wards. That’s why the last time that I was in I took an eye mask to block out light and headphones for my phone so that I could do the same as I do at home and listen to Radio 4/World Service all night. It worked but I didn’t have a full night as sleeping in a strange bed is challenging on it’s own, love LynneALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.
I'm staying positive and taking each day as it comes.
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