Not Being Able To Feel

    • Anonymous
      October 28, 2006 at 11:04 am

      Ok the positive person that I am has had a couple of bad days this week. The first was a couple of days ago when I was fatigued from the previous day of what seemed like not a lot of things. The second was yesterday. I was taking a shower last night and had not been able to stand in the shower now for a few months. I missed the feeling of standing there and letting the hot water hit you in the head and run down your body. So, I held onto some thing and stood up in the shower and turned the switch from the handheld shower head to the regular one… I couldnt feel the hot water. Not sure why I didnt see that comming since I cant feel anything physically anyways but it not only came as a surprise for some reason, it really got me down. Just not being able to enjoy the simple things like that. Don’t get me wrong, I appreciate every little bit I have gotten back but not being able to feel hot, cold, soft, hard, etc. The only thing I can feel is pain… weather it be nerve pain, muscle pain or pain from something hitting me really hard is just a little hard to take some days.

      Not sure if there are any Buffy fans around here but I was watching it last night and in Season 6 (DVD-2) there is an episode called “Once More With Feeling” where a demon basically comes into town and makes everyone start to sing and dance for no reason and when they do sing it is about the truth and things they have been trying to hid from other people. Anyways, Buffy had been brough back from the dead only a few episodes earlier and she had been struggeling because she was in heaven and now she couldnt feel anything except for pain (emotionally, physically is a bit of a question mark). Anyways, there are parts of a couple of songs in that episode that sounded like how I feel. The first is how I feel now that I have no physical feeling:

      [I]I Touch The Fire and it Freezes Me
      I Look Into it and its Black
      Why Can’t I Feel
      My Skin Should Crack and Peel
      I Want the Fire Back[/I]

      The next song seems to take up from leaving the hospital till today for us as a colllective GBS family. When leaving the hospital when we knew at least what was wrong and had been treated and the threat of dying from GBS was pretty much passed, its now just a waiting game to see what comes back and when because nobody seems to know anything:

      [I]Where Do We Go From Here
      Where Do We Go From Here
      The Battles Done and We Kind of Won
      So We Sound Our Victory Cheer
      Where Do We Go From Here

      Why is The Path Unclear
      When We Know Home is Near
      Understand We’ll Go Hand in Hand
      But We’ll Walk Alone in Fear
      [Tell Me] Where Do We Go From Here

      When Does The End Appear
      When Do the Trumpets Cheer
      [/I](song starts to fade at this point as does this email)

      I will be going out with some friends today and will be away from the the computer for hopefully the rest of the weekend. I think I need to rest, recooperate and regenerate this weekend. I’ll be back online Monday.

    • Anonymous
      October 28, 2006 at 11:16 am

      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”.

    • Anonymous
      October 28, 2006 at 2:14 pm

      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:) !

    • Anonymous
      October 28, 2006 at 2:42 pm

      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…………..

    • Anonymous
      October 30, 2006 at 11:00 am

      Hi all.. I went out Saturday feeling a bit down in the morning still. It was great getting out of the house with friends for the day. My best friend from high school (and actually going back to junior high school as well) picked me up at 10:30 in the morning and we went shopping, dinner, etc and didnt get back to my house again till 11:30 that night.

      Sunday my mom and one of my sisters came over to clean. I have 2 sisters and both them and my mom rotate where every 2 weeks, 2 of them will come over to clean my house together. I do as much as I can ongoing but I cant do things like pushing vaccums, standing long enough to dust, wash dishes (although I can load the dishwasher) wash the floors, change linnens, etc. So its really nice they come to help out.

      My boyfriend and I are talking abuot if I am still unable to do this stuff after the 1st of the year we may hire someone to come in and do it. He has been great and helps pickup, he just doesnt understand that there is picking up and there is cleaning, he doesnt realize that they are not one in the same, but thats ok 🙂

      Anyways, after the weekend I do feel a lot better now (no pun intended). I still of course cant feel anything except pain or extreme hot and cold but I am now back to being ok with it and just grateful for what I have.

      oh… and by the way… my name is wendy

    • Anonymous
      October 30, 2006 at 11:18 am

      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,

    • Anonymous
      October 30, 2006 at 2:06 pm

      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…