when will it end

    • January 21, 2007 at 10:28 pm

      Hey all

      Just when I thought i was getting better and would be able to start living a normal life, everyone in the house gets sick. I avoided it and was very happy about that. Suddenly I had excrutiating pain in my mid back and was vomiting and such. I went in to the dr and come to find out I have kidney stones. I am so sick of pain and being sick!!! I want to stop this crap and be me again. I want to go hiking again, I want to clean the house and fix dinner and stop being a burden on my family. I feel like half a woman…I felt I didnt have a heck of a lot to offer my man before all of this, but now I feel there is even less.
      Has anyone else had to go thru this? How long does it last? How bad does it get?!

      Sorry feeling pretty blue

    • Anonymous
      January 21, 2007 at 11:22 pm

      Dear Sis (we’re family, remember?) ~ I am so sorry that you have been dealt another blow. It just isn’t fair no matter which way you look at it but no one ever told us that this journey was fair all the way ๐Ÿ™ You are so weary and discouraged and I wish that I could just hug you as you cry. Here is a big cyber hug. I am glad that you came here to share your feelings. Probably all of us have felt so useless and burdensome at one time or another. So, we do understand. And we can tell you that “the sun will come out” ๐Ÿ™‚ we just don’t know when. Please know that I care and will keep you in my prayer thoughts. Hugs, hugs, hugs!

    • Anonymous
      January 21, 2007 at 11:26 pm

      Hey your not alone in feeling blue! I am in the same situation as you! It just seems I can not finish anything I have started. [LIST=1]
      [*]I don’t have the stamina either!
      [*]I don’t have the concentration to think things out all the way!
      [*]I can not get done in a week I used to get done in a morning!
      [*]I have to consistantly ask for help! I feel like I am a burden but they insist that I am not!
      [*]The fatigue is what stops me from at least cooking anything that needs time to cook. I am afraid that I will fall asleep while sitting in that chair and catch the house on fire! I have burned dinner twice in the last year!
      [*]I want to clean the house but can not do that like I used to! My back just will not take picking up and carrying stuff. Not to mention I pace myself on how many times I have to climb the steps.
      [*]Friends and family just don’t understand how I stuggle each day! Not to mention I thought I would never say: “I want to clean the house and fix dinner and stop being a burden on my family”
      [*]But when I talk about how I feel they just don’t seem to understand since I am not limping or crying out in pain. To them they can not feel how I am feeling on the inside. When I started to walk without the cane they declared me healed!
      [/LIST]I don’t have the strenght to do what I used to, but I think it is time to open up the comminucations and let them know that I am able to do more but still need help in other areas. Please don’t give up on me!

      So I hope you are not alone! We all have goals we have not met yet!

    • Anonymous
      January 21, 2007 at 11:51 pm

      Sue, Juddi said it all for me. I’m down in the dumps again. Poor vision suddenly flared up Wed., now I have to call the doctor to find out why. My husband bought an eye patch, which helps. I had been knocking over glasses of water on the table and pouring coffee outside the rim of the cup. I’m fed up with doctors. I know exactly how you feel.


    • Anonymous
      January 21, 2007 at 11:53 pm

      Judi said it all for me. I’m down in the dumps again. Poor vision suddenly flared up Wed., now I have to call the doctor to find out why. My husband bought an eye patch, which helps. I had been knocking over glasses of water on the table and pouring coffee outside the rim of the cup. I’m fed up with doctors. I know exactly how you feel.


    • Anonymous
      January 22, 2007 at 4:46 am


      Perfect, Perfect, Perfect!!! ๐Ÿ™‚
      I don’t post often, unless something prompts me like your post. Those symptoms you have listed are my sentiments exactly, (and I am sure many or All other people here, as well). I am going to print this one and keep it for proof of why I haven’t gotten much done in my life like I used to, before this fricking desease hit. I really like your # 3 ๐Ÿ˜‰ ๐Ÿ˜‰


    • Anonymous
      January 22, 2007 at 10:41 am

      It’s a Monday so hugs, hugs, hugs all around for my weary and discouraged Friends ๐Ÿ™‚

    • Anonymous
      January 22, 2007 at 1:09 pm

      Hugs to all! I know the feeling. It is hard to explain feeling fatigued to family members that know you’ve just had 8 hours of sleep! I feel for my husband as I am often feeling wiped out and we don’t get too much time together during a week as it is due to our work schedules.
      It helps to come here and read that others feel the same. We are not alone.
      Another round of hugs!


    • Anonymous
      January 22, 2007 at 2:19 pm

      Yes, I fight these feelings of being totally useless and a burden many times.

      It seems to me having a husband and kids can be a great comfort, but having family members around you who always counted on you pre-GBS can also remind you constantly and painfully of the fact that you are not capable of fulfilling the role you used to play in your family. I don’t have a husband and children, but looking at my sister’s family I know how exhausting it is to raise children even for a healthy person. I love them so much, but after an hour or two with my little nephews I just can’t even see straight anymore. Sometimes I wonder what I mean to these boys when I see them for such a short time, and even then I am often too tired to cuddle them or play with them. But I know they don’t see it that way, because I am their aunt and they simply love me for who I am. They don’t think I am useless at all, they think I am funny. The 3 1/2 year-old likes chatting with me, while the youngest loves it when I read books to him, even if I don’t turn the pages fast enough for him. They are kids and very, very honest, so if they think I am cool, that must mean something, right?

      For the ones who love us what’s really important is who we are, not what we do.

    • Anonymous
      January 22, 2007 at 2:27 pm

      Fairy_odd_mother, Sorry you are facing these problems. You have our support and can count on us.

      LadyKit you have hit every point thanks for the input.

    • Anonymous
      January 22, 2007 at 10:00 pm

      i’m so sorry you’re feeling down in the dumps. i feel exactly the way you do. i slept most of this weekend away and i’m still tired. how can that be?? well, it sounds like we’re all in your shoes. the good thing is, we wear these shoes together and walk this path together. not alone. we all remember how “it used to be”, but now we all have no choice but to move on and live our lives the way it is now and keep the fight and determination within us, so we have the strength to keep going. you’re in my prayers as always.
      with much love,

    • January 23, 2007 at 9:55 am

      thank you all for your support. It makes me feel better knowing I am not alone in my struggles to accept the “new me”. My GBS is getting so much better…I’d say about 95% better after 6 months. Not counting the fatigue and how out of shape I have become from not being able to do a darn thing. I am lucky hubby has been understanding and has been helpful with this latest problem. Yes, I do things slower now and not everything gets done on time (or at least what i consider on time) and I find myself apologizing over and over again for my shortcomings which bugs me.
      With the pain I have been in the past few days with my kidney, and hte percocet and anti nausea meds they put me on, the sleep I have had and relief from the pain has been awesome. I do feel bad because my oldest son has a stomach bug and he has had to take care of himself…but he is 16 now and can do so right? The kids have to learn mom cant always do it all even if it makes her feel guilty.
      Thank you all for being my friend and helping me feel stronger mentally!!


    • Anonymous
      January 23, 2007 at 7:47 pm


      I’m 13 years on from GBS. I was lucky and made a very good recovery. Fatigue and I are still acquainted but not so bad.

      Lady Kit – you burnt the dinner twice this year? Now you’re giving me a bad name – I used to get congratulated when I didn’t burn it.

      One of the people in my life, whilst perhaps not understanding the fatigue, who is accepting of it, is my daughter. If I say I’m exhausted and hit the couch, she does not complain. This might be partly because she knows full well that she will be able to stap up late as I’ll be asleep until 11 pm at least.

      Dear Eva, you brought my daughter with her aunt (my sister) to mind. Since she was little (my daughter that is) they didn’t cuddle much at all and played ‘shops’ but only for a little while. What they have both always seemed to do is – sit and chat, or lie on the bed and chat, look at books and mess around with make-up. Now, when we visit my Mum, it’s into my sister’s bedroom she goes and if my sister is there, the two of they chatter away for an hour. They don’t do the things that I thought they ‘ought’ to do together but they do what they like doing together. And it sounds as though that is what you are doing If your nephews didn’t like sitting and chatting and listening to stories, they would not sit there. What I’m trying to get at is, if you had never met GBS, chances are you would be visiting them, chatting and reading stories. The difference is that you would not have the guilty feelings. You are builiding confidence and social skills by being willing to talk and listen and an interest and probably a love of reading, whilst helping him learn to read and best of all you given them attention.

      What do you suppose they will remember: Their aunt didn’t run about or their aunt was patient and listened and read stories. My fond memories of one of my aunts is that we used to sit in front of the fire and chat. We did it very rarely but that it my abiding memory of her.

      I wouldn’t mind betting that you are one of their ‘special treats!’

      Fairly odd mother – you have kidney stones and you so have my sympathy – flipping painful if gallstones are anything to go by.

      If our best friends were in our shoes, would you think them a burden? Or a nuisance? I doubt it. More likely, you would think your best friend was having problems and you would help and probably be annoyed if she/he wouldn’t let you help!

      My Mum is 90, no longer walks unaided, her memory is not great, nor is her hearing. Is Mum a burden because of her fraillity – no. Any clashes we have are to do with personality etc but nothing to do with physical ailments, frailty or being a burden. You might mean work for your family but that is not being a burden.

      Whilst I do understand what we mean when we talk of ‘being a burden’ it’s not actually true, if you think about it. Would they rather not have you there? Would they not pull you out if there was a fire?

      If my Mum was to go on to me about ‘being a burden’ – that would annoy me, and worry me too. Being totally selfish, what I really like is when my Mum, whilst accepting what my sister does, praises her for doing it.

      You said: “I feel like half a woman…I felt I didnt have a heck of a lot to offer my man before all of this, but now I feel there is even less.” Flipping heck – you are in need of a major confidence boost! If you didn’t have something to offer, your man wouldn’t have been there in the first place! And look at it the other way, what has he to offer? Why are you still there? What has he to offer you?


      I think the answer is love.

      God bless

    • Anonymous
      January 24, 2007 at 12:57 am

      I’m sorry your feeling like a burden. You shouldn’t, though. Not to tell you how to feel, but I’d be willing to bet that your family doesn’t think of you as a burden. From what I’ve heard, they love you very much and would willingly and nongrudgfully do anything in the world for you( except rob a bank unless it was a bank to get you better) Anyways, giving them a sincere thank you (in writing or verbally) might help alleviate your guilt. In the meantime, continue taking care of you.

    • Anonymous
      January 25, 2007 at 5:56 pm

      I just wanted to say I’m totally there with ya, lady! Well, not THERE, but I know the general tune, if not the exact words of the song you’re singing.

      I’m 9-years post and I wish I had some sage wisdom about looking on the bright side, counting your blessings, blah blah blah. The other people on here are better at that and much more convincing, I’m afraid.

      I’m 28 years old and am just sort of starting to make sense of a lot of the past nine years (and the other 19 years too, I suppose). This society is so focused on money and activity, it’s hard to survive when you can produce neither. At least speaking on an ego-level. Which sounds like you’re hurting for. I hope you’ll consider finding someone to talk to, because it sounds like you didn’t have a lot of self-esteem even before all this crap was dumped on you. I find that most people who think they “don’t have a lot to offer” their partner often are the ones who have the most to offer. My therapist is constantly harping on me about being nicer to and easier on myself.

      But point being, where you’re at sucks right now. Well, actually it just sucks period. And as for the end, it’ll end when each of us finishes up living. I’ve learned especially well over the last nine years, “If you want to make God laugh, tell him your plans.” So if you look for an end to your complications and aggravations that are medical and/or GBS-related, you’ll go stark raving mad. And those straightjackets don’t allow you to type well! So I don’t suggest that route.

      I’m not trying to paint a bleak picture. It’s discouraging when you have a bad bout of circumstances. The water heater that you don’t have money to replace needs replacing; the government is denying your disability and all that stress makes you so exhausted you have to keep ordering out which adds to credit card bills. Or whatever set of happenstances happen to you. But these whirlpools of crappy occurences happen. A lot. To everyone. It’s just that we have GBS to blame it on whereas others tag it to a big project at work or a family member’s illness… Everyone tries to find a center, an explanation to peg bad things to. It’s human nature. I mean, I’m totally all about entropy and chaos theory (inasmuch as I understand them) but I still get awfully pissed off that things are so unfair. When technically my worldview shouldn’t include “fair.”

      Anyway, we all get these clouds of bad things raining down on you. One of those, “You have to laugh or you’ll cry” type things, we try to just shake our heads and steel ourselves for the next thing to come down the pike. I get through it by trying to remember the times when GOOD things rain down on me. Sometimes hard to enumerate when I’m lying on the couch so tired I don’t even want to breathe. And sometimes I just wallow around and think about how much it sucks. But often, I’m able to remind myself that, since bad things group together, so do good things and so EVENTUALLY some good things should slap me in the face. It’s total rationalization on my part but it seems to help.

      Granted, I also just got engaged a few months ago and the boy-o is so incredibly understanding of my limitations — I mean, seriously, more understanding than *I* am able to be of them! — that I feel currently like all the bad crap barely makes a dent. So I’m sort of unfairly preaching from a little love cloud. But it sounds like you already have a great guy and the fact is that just about everyone I have met on this site (I think the couple bad folks aren’t even around anymore, actually!) is a total sweetheart, smart, nice, incredibly empathetic and sympathetic and just terrific human beings. (Another way I rationalize my illness by the way!:cool: ) But seriously, given the numbers, I really think that simple math will show that you simply HAVE to be one of the veritable throng of amazing people on this site. Sorry, but you can’t argue with math! So when you catch yourself putting yourself down (well, again, seriously think about finding someone who can help you see all the good in yourself or also consider that some of these feelings are coming from some very real and very understandable depression caused by the shock of what happened to you) just remember that now that you’re one of us, it necessarily means you rock! (Kind of like when I once told a guy that if he said he wasn’t cute, he was technically insulting his girlfriend’s taste and he didn’t want to be putting his girlfriend down did he? :p )

      Take care!

    • Anonymous
      January 25, 2007 at 9:08 pm

      Hi Abby: After a day when my pain just would not quit and I had to take two naps and a percocet just to get through, I read your post which made me smile. You have a learned a lot in your 28 years and it seems GBS can be a good teacher for all of us. It is wonderful for me to have a wife of 36 years as a perpetual support and though she gets pissed at fate from time to time she never puts the blame on me. So, when I am tempted to dump on myself for not being the man I used to be, she is there to remind me that I am still myself even if the outer circumstances have changed so much. And all of the members of this select group are here to help as well. Your post helped with a very difficult week-thanks and thanks to all who give so much support. Jeff

    • January 26, 2007 at 2:29 am

      I do have to clarify that hubby is wonderful….sometimes I think too wonderful LOL! While I have been sick this time (I was almost too stubborn to ask for his help when I was sick with GBS) he has taken kids to and from school for me even if he stayed up late the night before, fixed diner for everyone (a real treat since I love his cooking but rarely allow him to cook since I enjoy doing it myself), cleaned the house, kept the kids busy and everything is under control. He has a ton to offer and so much to give and after a string of crappy relationships and a failed 1st marriage I sometimes wonder why I got so lucky this time…and always thank God for this gift! I guess it stems from always feeling like a burden to my ex because I was a stay at home mom and refused to live a lifestyle we didnt need to live and be in debt up to our eyeballs (the keeping up with the Joneses stuff) yet he HAD to have for some reason. (NOW hubby and I both work from home, couldnt care less about what the Joneses or Smiths have and are very happy paving a different road for our family). Before I always felt if I didnt put in 8 hours of house cleaning and all then I was not pulling my own so to say. Sure am glad to be out of that relationship!!! Maybe I realize why I got so lucky this time…I deserve it! And I guess I do have something to offer…afterall I am kind, loving, generous, fiesty, can even be funny sometimes and I love my family dearly, and I am very supportive….Feeling sorry for myself made me sound so pathetic. Sorry ๐Ÿ™ I do lack self esteem a lot of times but have definitely made up for the lack of it in the past years before hubby. I’m a fixer so I was always attracted to guys who needed me (HA!!!) and it is nice to be needed differently now and also know I dont have to do it all. The best part is TRUST! I can actually get sick and things wont fall apart around us. Sheesh with ex I remember having a sick baby and being dog-sick myself and still being expected to take care of things. What a difference!! Thank you Lord!

      Sorry didnt mean to pour out here, but I felt I needed to let ya know hubby isnt the reason for my self pity or any lack of self esteem. And I am working on it day to day ๐Ÿ™‚


      ps still sick as a dog but got a urology appt next week. Thank goodness residulas havent kicked up during this!!!

    • Anonymous
      January 26, 2007 at 8:02 am

      Hi Fairly Odd Mother: Yes we have to find our own way in life and not care about what others do or think so long as we find the best way we can to live. GBS makes that even more important. I’m glad to hear you have such a supportive partner-part of the trick is letting our care givers be just that and not refusing out of proud the offers they make. I struggled with that one but am much better at it now.
      By the way I had my gall bladder out 10 months after GBS and then found out I have two kidney stones sitting in there waiting like a time bomb to come out. I have had kidney stones twice before and thought it was the worst pain imaginable until I had GBS. First time I had kidney stones I felt sure I was dying because it seem like such pain could only come from something fatal.:confused: Hang in there-these too shall pass;) Drink as much as you can stand. I know they have new treatments these days using sound waves to break up the stones without having to do surgery so there are a lot of good options. Best of luck, Jeff

    • Anonymous
      January 26, 2007 at 4:09 pm

      Oh don’t be silly! No need to apologize at all!

      We just wanted to remind you that just because you’re incapacitated right now does NOT mean that you don’t deserve your wonderful husband. And when you start feeling the way you did when you posted that note — and please please please don’t forget that it is COMPLETELY okay to post some self-pity and doubt on here, that’s half the point of the board!!! — just remember that if he had been the one who had gotten sick, you would be doing exactly what he is right now. You’d be ferrying the kids around, cooking, cleaning, tending to him. He definitely deserves kudos for taking on a lot and being obviously very sweet about it, but I’m sure he knows that you would do the same for him in a heartbeat if the tables were turned.

      I totally know what you mean about being a “fixer” and being stubborn and independent. That’s how my family figured out I must have something serious, in fact, because I was downright terrified to be alone in the house as my body failed. They though, Cripes, if she’s admitting fear, it must be bad:eek:

      The one (very mixed) blessing about this disease is it forces us all to learn to ask for and accept help, and to stop demanding perfection from ourselves. I swear, I’ll get that any day now:rolleyes: But seriously, take this time, hard as it is, to learn your value. See what everyone is willing to do for you because they love you. Don’t see yourself as a burden. You’re still the person they love and care about, so you need to LET THEM do things for you. Your hubby is probably very shell-shocked right now about you getting so sick and probably feels very helpless. In taking care of the kids and tidying the house, going and getting a glass of water for you, he’s gaining some small measure of control. So try to remember that next time he asks if there’s anything you need.

      Take care,

    • January 28, 2007 at 3:18 am

      oh Abby you made me cry! You are so incredibly right! thank you for your perspective and after all the posts I ahve been enlightened. I am loved…okay Im crying again dang it LOL!

      Love and hugs and prayers everyone

    • Anonymous
      January 29, 2007 at 11:14 pm

      Just wanted to know if you are feeling better? I’m so sorry to hear that you have been sick again and I understand your frustration!

    • January 30, 2007 at 8:59 am

      Thanks Iowagal

      I am feeling better pain wise so far. I have a urologist appt thurs and hopefully that will turn out well.

      Does the fear of GBS ever go away? I am tired of being afraid of every tingle, every sniffle, and anything else that could cause GBS. I know it is rare to get again, but sheesh it was supposed to be rare in the first place and the stats for a second time are higher than a first time (which I do undertand is because the relapse stats are based on people who have had it so it is a smaller group versus the first group…but it still freaks me out).

    • Anonymous
      January 30, 2007 at 1:27 pm

      Dear Fairly Odd Mother,

      When I read your first post, it sounded like I wrote it. No kidney problems, but when I developed GBS the first time, my husband was worried about loosing his job, my beloved Newfoundland had to be put down due to a severe form of elbow dysplasia at only five years old, I developed a breast mass that they had to remove, but it was so deep it required full surgery, and my son was diagnosed with ADD, even though he was placed in honors classes, he processes info slowly.

      The doctor knew the first day that I had GBS but put me in the orthopedic ward and put that my diagnosis was a “headache”. You can imagine the lack of care that the nurses gave me when they thought I was a bleeding heart crying in pain from GBS and they thought I just had a headache even though I couldn’t walk, use my hands, slurred speech, trouble swallowing and breathing and couldn’t keep my eyes closed when trying to sleep. I waited four days until he started treatment and was about to be put on a respirator because the doc was a smart alec who said that GBS goes away completely within a few weeks and he was waiting to see if i was going to heal ,myself without treatment, meanwhile more damage was done with the wait.

      Six weeks after my initial onset, I was one of the lucky few ( couldn’t be a lottery huh) to have a relapse. The relapse wasn’t as severe as the first time, but did develop as quickly and motor skills degraded within days. My new neuro ( the hospital doc wouldn’t follow-up with me since he said he didn’t take my insurance ( that was a big mess for hosp treatment – the hosp took my ins and the doc was assigned to me so you would think that he would also acceept the same insurance). Well the new neuro wasn’t sure how much Ivig to give me and asked me how much I wanted!!! I got help from this support group and another neuro at another hosp to determine my doasge. Well, then the hosp ran out of IVig so they had to find a home nursing care that had a supply. It was better to be treated at home, but the nurse was also a saleswoman who got commission, so she told my neuro that it is standard procedure to treat GBS for six months of IV dosages. I discovered that she was on commission after the second month when she sent another nurse to fill in for her and that nurse – besides leaving me home alone to go out to the local store when I was supposed to be monitored for potential risks, told me about the first nurse.

      Well, that is a side saga, but having a relapse is very rare and if it were to happen, it could be one isolated relapse and not a sign of chronic CDIP. I have not had a relapse in 12 months and the IViG worked even better for the relapse. It was also a different brand with less side affects of nausea and headahes. By the end of the second day of treatment, my walkig gate was starting to improve, and within two weeks, I was back to where I had been prior to the relapse. So if it were to happen, being savvy to the symptoms takes a lot of fear out of it. It is also like love – you can tell the diffeence between a bad couple of days and a relapse just like knowing when you meet Mr. Right.

      I got on this site to take a physical break from spending only 15 minutes of stripping some wall paper. I know the frustration about not getting done in a week what you used to do in a day. I used to have a second p/time job as a church youth director and loved it and felt that I was doing God’s work. I had to resign after GBS since it was too physical and I would spend hours in severe pain afterward. I still hold another p/time job as Christian Ed Director and am so thnakful that I can work from home in at the time of day that i fel most fit ( ha ha – I should rephrase and say in least amount of pain). I pray oftern to god and ask why He won’t restore my health so I can do even more for His ministry and be a bigger help to my lving family. I hate having a teen grow up not being able to feel that his mother is someone he can lean on whenever he needs me and not have to find me in bed and feel that he shouldn’t bother me.

      I am also thankful for a wonderful husband who never complains and is tirelessly willing to do anything for me. I get worried about trying to make ends meet. Our plan was that this year when my sone stopped homeschooling, I would go back to work full-time to pay off some bills and start to save for our son’s college. Not only am I incapable of bringing in anythin more than grocery money due to pain and fatigue, but we are trying to sell our boat that we waited for for 15 years and can not make the payments becasue I can not earn a decent income. It sounds petty I know to say “oh we have to sell our boat” , but it gave us so much pleasure together as a family and was what attracted us to each other and for a year and a half, became part of our life to be able to be on the bay and realize how small we are in the scope of God’s creation.
      It is frustrating not to be able to carry out plans of work nor to be able to collect disability if you had not been working for several years prior to illness. of course with me, I was homeschooling my son and going in debt with the plan to send him to high school and then go back to the job market – explain that to the government “I was planning on working, but now I can’t.”

      Something that has helped my muscle spasms. My girlfriend had a hot tub put in for her Multiple Sclerosis. She keeps the temperature low 94 to 96 degrees since heat is a no no for nerve pain. I felt so much better after being in her tub, that my husband took out a home equity loan to put one in here. Besides the immense help it is for muscle pain, my Pain Managment Doc tells me to kick my legs and move my arms in it for water exercise. I still don’t have the muscle tone I had prior to GBS, but also going in the tub – all year around, I have a dome tent enclosure for it so it is nice in the winter, I also mentally feel better since there is less pain when in the tub and it is “my time” I am on an equal footing with anyone else in the tub unlike other activities where I can not yet do them and feel sad.

      I hope your kidney pain is getting better. My Nuero did say that having GBS and getting sick with something else can have more intense pain since our nerves are frazzled. If you feel better with a pain medication, don’t be stoic, if you can feel better and might even feel good enough to smile at your family is better than a bad episode curled up wishing the hours away. I saw that someone posted that they have an occasinal “pain holiday” whre they take stronger pain killers for a day of physical freedom – something that they can look forward to. I actually had some perocet left over from my breast surgery and took them to go skiing for a day – actually it was only twice down the lower half of the mountain, but I DID IT, I DID A PHYSICAL ACTIVITY THAT I USED TO DO BEFORE GBS!! I didn’t even feel awful afterward as I thought I might since the medication lingered long enough to compensate for any residual physical pain.

      God Bless and remember that you are not alone, we know what you are going through and if some of the other senior members can be as brave as they are to keep up the good fight, I know we can too.


    • Anonymous
      January 30, 2007 at 1:34 pm

      For the most part, yes you will start to relax about the tingling and sniffles and such. I freaked out my quarter back at school when, after a night of drinking, my toes felt asleep again. It was nothing but the alcohol, of course, but I had a little meltdown thinking, “I cannot go through this again, I CANNOT go through this AGAIN.”

      Part of the problem is that after such a serious illness, most of us become, as my therapist termed it, hypervigilant about our bodies. We feel betrayed by them on such a deep level that we notice every odd sensation or small pain more than usual. And who the heck can blame us??? But the upshot of it is, we are going to then be more worried about relapse because we notice everything.

      Over time — everything about this disease seems to be over time blah — you start to learn what is “normal” now. It will take some time. And if you’re anything like me you might still have one or two special trigger issues. For example:

      We spent an obscene amount of money on special pans (to be fair they have a 50 year warranty but still…) that cook food while letting it baste in its own juices because I am so paranoid about undercooked chicken I dry the little suckers out trying to be sure they’re done through and through. If I don’t trust the cook (someone I know is not generally used to cooking) and think there’s even remotely a chance the meat is underdone, I start to feel sick to my stomach and can’t finish the chicken.

      And I still hate handling raw chicken for the obvious reason. If Tim is around I ask him to do it. Otherwise, he has some latex gloves for when his hands start to crack from his eczema. I put one on and then throw it away when I’m done. :rolleyes:

      Part of me knows it’s slightly ludicrous, if understandably so, but it’s sooo much better than worrying for the next half hour about whether I sufficiently washed my hands after handling the raw poultry.

      Take care and always feel free to post if anything is specially worrying at you. I know when I was first getting back to my life, I was petrified of relapse, no matter how many times I told myself it was virtually impossible. It goes back to that whole trust problem with your body. Completely normal, if absolutely infuriating.

    • Anonymous
      January 30, 2007 at 2:03 pm

      Oh Laura! It sounds like you’re having a truly bad time of it! I am so sorry.

      I definitely know about the frustration of limited work ability. I’m working toward being a CPA but don’t know if I’ll ever be able to do more than just troll around for work around tax time. I’m hoping I’ll have the wherewithall to do some monthly bookkeeping work for a couple companies, since that requires only a few hours a month per company, generally. But I have to steel myself for the idea that I might be doing all this studying for essentially nothing more than my own edification. Still, it must be just that much more frustrating when you’re doing such good and selfless work and are cut down in the middle of it. I’m sorry that it makes you so unhappy. I’m not terribly religious myself — at least in any organized religion sense — but I do like to think that there is something larger than us out there (with a nasty sense of humor at times, but also benevolent) and while I do believe in free will and that God isn’t behind every single event, I do think that something is out there keeping an eye on us. And so, whether by Him or pure happenstance, you’ve been set on this new path and should try to whistle a jaunty tune while you stumble down it. That’s not to say unhappiness is bad. It’s totally acceptable, along with some self-pity. But while I don’t necessarily buy into “everything happens for a reason” or “God only gives us what we can handle” (don’t even get me started on that last one!), I do think that some good can come from all this bad. If I hadn’t gotten sick, I would be working myself to the bone, unhappy and wondering why but not talking to anyone about it, and just working harder, sure that that was the answer. Because I got sick, I’ve had to slow down. I’ve had to work on my ridiculously high standards for myself. (Well, start to work on it, anyway.) I’m not willing to say that God did this to me just to give me some introspection and get my butt into therapy. But while the GBS and resultant fatigue is just mind-blowingly unfair, I know that some minor good has come of it. It’s not much solace but I really don’t think I’d be the person I am now — I mean, at least 50% different — if I hadn’t gotten sick. I might not have met my fiance. And so I realize that there are some spots of sunlight filtering through on this arduous, bramble-filled path we’ve all been set on.

      And as for your son’s college, while it’s very aggravating to not be able to save for his college, you can make him bank practically every cent HE makes over the summer when he starts working. And don’t forget that financial aid exists for these situations. The colleges do look at the parents’ finances as a large part of determining who gets grants as opposed to loans. Worst case scenario: He comes out of school in a lot of debt, just like most students. Most of my friends came out of school tens of thousands in debt. And they’re not living high on the hog, but they’re making do.

      As for your boat, don’t worry about sounding petty. You two worked hard for that boat and it was a long time coming. You have every right to be sad that it’s having to be sold. As one of my therapists would say: You have every right to mourn what you have lost as a result of this illness. It’s okay. It’s probably downright healthy to acknowledge it, instead of belittling it as sounding petty. But there will be time, later, even though right now you have to give up something you shouldn’t need to part with. After you’re done helping your son through school (and yes, that is a long way off, which is awful), you can work back up to the boat. You could even see about putting away a tiny sum every week toward the boat. It will seem ludicrous but hey if it’s going to be ten years anyway… Five or ten dollars a week might just add up.

      Oh and one random piece of advice because I wish my parents would have thought to do this: CDs at the bank. If your son has ANY money in the bank, please please please put it in a CD. With the permanent fund dividend up in alaska, plus saving half or more of all bday/holiday/babysitting money I made and all of my paychecks from work, I had a lot of money in the bank, but it just sat there. I could have easily paid for college if my parents had been putting the money in CDs. They are a guaranteed source of interest, pretty much always better than a savings account rate. Six to nine month ones are the best rates, generally, and then you can just let them roll over and they will be put back in to similar termed CDs at whatever the current interest rate is. It’s an excellent way to make your son some money without any risk of loss. Your son has at least three years before he may have to dip into his bank account for college. Might as well beef it up in that remaining time!

      Take care and please keep in touch,

      It sounds like you have a ton of nerve pain. Are you on anything like neurontin? Where is the pain located? (Okay, sorry CPA moment: Since you are using it for pain relief, part of the hot tub may be tax deductible if you are able to get a doctor to agree that it was a very therapeutic pain management/relief technique.)

      Also I wonder if you’re taking anything for energy. I personally have had a lot of success with Provigil, though others on this site didn’t like it and preferred Ritalin. Point is, these work on your nervous system, so it’s not just like having some caffeine. I’m still far from one hundred percent, but at least I no longer have to take naps in the middle of the day! I can even run an errand or two a day reliably, now. Any extra bit of energy, frankly, is just so worth it, I urge you to look into it if you haven’t already.

    • Anonymous
      January 30, 2007 at 9:37 pm

      Glad to hear things are starting to get better for you. I hope you get some answers from your dr. visit. Our son had kidney stones several times while he was in college and it was really painful!

      I know what you mean about worrying about a relapse. I have been having more tingling than usual in my lower back and arms. The tingling had pretty much subsided in my legs. Any little thing like that makes me depressed…even though I know this all takes time and residuals come and go. That’s why this forum is so great! I get on my computer and read about what others are going through and then I realize I am not alone!!!