Not Being Able To Feel

I am sorry for your pain! and the lack of other feeling. I too, have an exacerbation of the loss of sensation ~ mostly temperature. Yesterday, when doing dishes I thought something was wrong with the hot water tank . . . Then last nite when I was filling the bath tub, I saw that the faucet handle was turned way to hot BUT the water felt tepid to me. I called my husband to come and check it and thru in the hot tub thermometer ~ yup 110* and I couldn’t feel it 😮 As Gene would tell me ~ rest, rest, rest, ha! Have a wonderful weekend “break”.

I am really moved by the way you describe your physical and emotional pain (and the words from Buffy’s songs!). I know the (lack of) feeling. A couple of weeks ago I was sitting at a table in a lunchroom which was ever so slightly trembling because there was a coffee machine standing next to it. I just couldn’t rest my arms on the table. On the other hand, I have an electric blanket in my bed because I am always so cold and I can’t feel the warmth of it in my legs. When I finally do it is as if my legs are on fire.
I hope you’ll have a great weekend with lots of ‘normal’ and good feelings:) !

hi gang. i know how you feel. (or don’t feel) i can feel some temperature, but i can’t feel wet or pain until it’s too late. i love to cook and while trying to boil potatoes for potato salad, i put a fork in the water to stab a potato to see if it was done. what i didn’t feel was the (boiling) water my thumb was in while checking. needless to say, i boiled my thumb along with the potatoes. i also fell while going through my i.v.i.g. and chemotherapy treatments and broke my leg and tore my a.c.l. i kept trying to walk on it, but my leg didn’t want to cooperate. after getting an xray i found out why i couldn’t walk on it. i also keep breaking fingers and toes. i’ve stabbed my foot a few times trying to empty the dishwasher, dropping sharp knives on my foot. also broke a few dishes on my foot. it’s very frustrating at times, but this is the hand i was dealt and i have no choice but to play the hand that was dealt to me.
i just tried to ride a 26″ 10 speed bike for the first time in 5 years. i found out i couldn’t. my balance is too off. so i’m going to take my bike to the bicycle shop and have training wheels put on it. i discovered this summer that i can’t maneuver my hands to put my hair in a pony tail. i cried for a few minutes and bought a different kind of hair contraption that i can use. my body is disabled, but my mind isn’t. (well, i guess that’s debatable too).
this website has really helped me cope with the way my life once was and how to deal with the road ahead.
12 more days ’til our sandals st. lucia trip. i’m determined to go parasailing. i did it before i got gbs. i don’t see why i can’t do it now. being attached to a life jacket and a parachute; what’s the worst that can happen? 😮
thank you all for listening to me (kvetch).
anyway, get plenty of rest (doby). sorry, i still don’t know your name. hope your friends are helping you take your mind off of things. talk to ya monday…………..
deb

hi wendy. i’m so glad your friends were able to help your frame of mind a bit. you really find out who your true friends are when a tragety such as gbs hits you and alters your life. i lost a life long friend when she came up from georgia and saw the condition i was in. i haven’t heard from her since. oh well, it’s her loss, not mine.
that’s great that your sisters and mom help you clean. (guys really don’t know the difference between cleaning & picking up). my hubby helps, but it’s not the way i would do it. i’m trying to find a new person to come in and just clean the things i can’t reach or maneuver my body to get to. such as; i got stuck between the toilet and vanity once, trying to clean behind the toilet. wasn’t funny then, but it’s pretty funny now. one of these days, i’ll have to tell you all about shaving my legs. (now i get them waxed) ‘nuf said for now. everyone keeps telling me that i should write a book on living with gbs.
i have a good sense of humor and that’s how i get through the rough times. so when you get down, try to see the positive or funny things in life and try hard to smile. or if that doesn’t work, we’re always here for you to lean on. we’ll hold you up. i promise.
with love and hugs,
deb

I did not make a great recovery (from CIDP) either. After 4 1/2 years I know that this is as good as it’s going to get. I walk with AFOs & a cane when I go out. I do have to use a shower chair & hand-held shower, but after 2 years of only sponge baths, I am grateful for that. I was a pretty low level quad for almost 3 years, & found I did lose most of my friends. But I am 53 & most of my friends are still working, & many are busy with their children & grandchildren. Whenever I do go out with friends, I always have to initiate it. I call people & they seem glad to hear from me, but unless I call someone, only my mother or mother-in-law call here. But at least I do have 3 wonderful children (who live on their own) who stuck by me through all of the really bad times, for them I am also grateful.

I became ill in March of 2002 (very rapid decline), & by November we had hired a housekeeper to come in every two weeks. It is such a godsend, it takes her only 2 hours to change the bedding, clean both bathrooms, scrub all of the floors, dust & vacuum. My husband is retiring in 6 weeks, but he said he wants to keep the housekeeper. I guess it is a luxury we cannot afford to be without. He is my best friend, so I will always have someone to do things with. For that I am grateful as well… I can live with the pain & numbness every day as long as I have him & my family supporting me…
Pam