irismarie
Very helpful member
- Joined
- Nov 21, 2009
- Messages
- 1,386
- Reason
- PALS
- Diagnosis
- 05/2010
- Country
- FR
- State
- tarn et garonne
- City
- valeilles
Well, S went out for a drink with friends so I put myself to bed. This is one of the hardest things for me to do and leaves me wheezing and exhausted.
However managed it. But no chance of sleep as my feet were sooooooo cold they were painful. Made big decision to get up again to make hot water bottle (from the tap, no kettles!) as I knew I could not sleep so cold. Did so. Back up mount Everest to bed. Did little soduko while my bipap blasted, waiting for feet to warm up.
Buggrit. Either I had not tightened the cap enough or the hot water bottle was broken and the bed and I were soaked.
Phoned friends and neighbours but no reply. Realised it was midnight and was glad they had not replied! Huge effort to change clothes - taking socks off and putting trousers on is not easy at all - then flopped into the bed made up for my son's arrival to day. Of course, moving or turning over is practically impossible .without bits of the hospital bed to hold on to. Just settled down, feet freezing, when I just HAD to go for a pee urgently. Of course it tool AGES to be able to get out of this bed with no aids. On the way to the bathroom I just had no control whatever (another set of muscles gone?) and I wet muself, the chair and the bathroom floor. Cleaned self as well as poss, tok off and put on pyjamas yet again, kept phoning S but his phone turned of,, the bastard!
Got back into bed, totally exhaus ted and my legs where I had peed BURNED like Hell. I really thought my skin was going to peel off. Supposed it must be the rilutek. Wow§ What that must be doing to my kidneys!
Well all that wore off and I slept. Only to be wakened by S back from his night out at about 3 am, trying to get into bed beside me. Phrases containing words resembling "lower than a snake's belly" and "You promised to keep your phone on just in case" flew around but he was so out of it he did not fight back, just got up and went out to his camping car.
I slept again but woke early for yet another pee. This is what happens when I try to rehydrate myself. It does not stay put where it is meant to be. And how can I be dehydrated when my legs are so full of liquid?
Anyway, yet again, I soooooooo wish I had a normal, loving carer.......but at least he does a lot of things I cannot do. Just must not let it get to me.......Tired but happier this morning as son Rich will be here this pm
However managed it. But no chance of sleep as my feet were sooooooo cold they were painful. Made big decision to get up again to make hot water bottle (from the tap, no kettles!) as I knew I could not sleep so cold. Did so. Back up mount Everest to bed. Did little soduko while my bipap blasted, waiting for feet to warm up.
Buggrit. Either I had not tightened the cap enough or the hot water bottle was broken and the bed and I were soaked.
Phoned friends and neighbours but no reply. Realised it was midnight and was glad they had not replied! Huge effort to change clothes - taking socks off and putting trousers on is not easy at all - then flopped into the bed made up for my son's arrival to day. Of course, moving or turning over is practically impossible .without bits of the hospital bed to hold on to. Just settled down, feet freezing, when I just HAD to go for a pee urgently. Of course it tool AGES to be able to get out of this bed with no aids. On the way to the bathroom I just had no control whatever (another set of muscles gone?) and I wet muself, the chair and the bathroom floor. Cleaned self as well as poss, tok off and put on pyjamas yet again, kept phoning S but his phone turned of,, the bastard!
Got back into bed, totally exhaus ted and my legs where I had peed BURNED like Hell. I really thought my skin was going to peel off. Supposed it must be the rilutek. Wow§ What that must be doing to my kidneys!
Well all that wore off and I slept. Only to be wakened by S back from his night out at about 3 am, trying to get into bed beside me. Phrases containing words resembling "lower than a snake's belly" and "You promised to keep your phone on just in case" flew around but he was so out of it he did not fight back, just got up and went out to his camping car.
I slept again but woke early for yet another pee. This is what happens when I try to rehydrate myself. It does not stay put where it is meant to be. And how can I be dehydrated when my legs are so full of liquid?
Anyway, yet again, I soooooooo wish I had a normal, loving carer.......but at least he does a lot of things I cannot do. Just must not let it get to me.......Tired but happier this morning as son Rich will be here this pm