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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
 
What a night for sure So sorry. That sounds like torcher or a bad night mare. I know I have alot of bad nights w/out the stummbling blocks. I hope you have a good day & a better night tonite.
 
Irismarie,
I'm so sorry you have had such a bad night again, and that you were left alone when you have been feeling so anxious.

I picked on your comment that you wished you had a "normal, loving carer", because people seem to to talk so warmly of their carers - or is it the carers themselves who are talking about how happy they are to help their loved ones. maybe there are others who are different.
I'm so aware that if I turn out to have als or similar, my husband of less than a year would not be a good carer at all. Since telling him my doctor want to have me tested for als, I haven't had so much as a hug. He seems to lack compassion, and when the other day I with difficulty put on a dinner party for his friends he didn't help at all. I was nearly crying with the weakness in my legs. I moved to the country when I married him, so I haven't friends here - or not close yet, because there hasn't been time, but the church people are very nice.
I have loving family, but they're not here.

You can do without hearing my troubles, but you're always so compassionate with people. We so sympathize with you at this time.
Joan
 
Oh IrisMarie! I'm so sorry you had such a long night!

I'm thrilled your son will be with you today! That should be lovely. Is there NO WAY you could tell your children you need a better caregiver? They could help you find someone who will give you the kind of support you DESERVE! My heart breaks for you when I see you are left alone in the times you needs assistance. You are such a positive, encouraging spirit!

Enjoy your son!
Love,
Melody
 
Irismarie, How I wish I could be there with you to help you when you're having a difficult time! Your caregiver...well, I'll just keep my opinion to myself but still, he could be better. I hate that you were left alone for so long. I'm so glad your son is going to be with you. How long is he staying? Maybe talk with him and explain what is going on. You are not complaining, you are simply stating facts. You are such a wonderful person that I hate to see bad things happen to you. At least think about it, please.

Have a blessed day.
 
I always feel so ashamed later when I have sent a long letter of complaint but I get carried away on the moment. Everyone is going through things and I feel really selfish for going into all these silly details.. Anyway, anyone else remember Jonny Ray's "Such a night? It was banned from the BBC - and when I think now of all the filth that gets shouted , sung, and screamed in the name of music, I think "bring back those days of comparative innocence!"

Anyway, have highlighted for my own self fac that I must do something about facilitating getting into bed.

What exciting adventures we do have;-)
 
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Don't ever feel ashamed again.. We are here for you for anything just like you are always here for us. We love u and wish we were closer and could help.. Sending lov and hugs your way today, Linda
 
IrisMarie, don't feel ashamed. How will we know unless you tell us. I think the Follies Vincent is going to have to deal with S. Meanwhile, I'm praying for you. Love you times ten. Ann
 
iris marie i to agree dont be ashamed for sharing thats what were all here for to listen to encourage just to be a friend whom really cares for ya when times are tough or even the good times im praying for ya jeffp
 
Good Morning from Richmond, VA Irismarie!
Don't you ever feel ashamed for feeling and expressing what you feel. That's what we're here for - to help and comfort you as best we can. Have you come up with an idea about getting in to bed? Is the bed too high? My mom has a really high bed (she's still in the same bed as before her diagnosis. We're getting her a low stool that has a handle on it to assist her in getting in to bed. Is that something that might possibly help you? I just wanted to share that in case it could help you out.
Love you!
 
Yes, Linda. It is a hospital bed but the mattress is a special one and v thick so makes for high:--(
 
Dear Irismarie, I just read your post...what a night indeed! i feel so sorry that you have had to manage on your own. Just not right! and please dont feel ashamed for expressing how you are feeling, as someone earlier said, how are we to know if you dont tell us.
I am glad that you are okay and i hope you are enjoying your visist with your family( I peeked in on another post)
Susan
 
and remember you are not alone in this ... we all care and love you thats what this place is for
 
YOu all comfort me so much. The most important people in the world. The bond this illness weaves is unbreakable
 
Irismarie, I am so sorry that I missed this thread until tonight. That does sound like a truly awful night and I hope that you never have another like that.

I wish that you had a normal, loving carer too, all we can be is more or less abnormal loving people who care about you. I know that you have family there now so I feel better for at least a few days but please take care of yourself (easier said than done, I know)
Love to you
Barry
 
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