Personal Message to Caregivers

    • Anonymous
      December 26, 2007 at 1:01 pm

      I’ve been seeing my fiance Ben’s neurologist for migraines for the last few months, and he ended up giving me a referral to talk to a psychologist about an eating disorder because he says I’m very thin, and I told him I didn’t like to eat since Ben’s GBS. I called and talked to the psychologist last week for half an hour, and she agrees with the doctor that I’m anorexic. Although I felt pretty miserable after talking to her, it felt really good to get some of the emotions out that I’ve held inside for so long. I’m actually looking forward to starting therapy because now I know I’ve been dealing with my issues all wrong, and I’ve felt very vulnerable since my doctor first started getting me to open up about them. It’s weird looking back on an old thread I started in May 2006, because I think that’s when my problem first started, and it’s only escalated since then. I don’t feel like I’m too thin, but when I told the psychologist how much I weighed, she said she was surprised I’m not already in the hospital on a feeding tube. If any of you other caregivers feel like you’re dealing with your issues in self-abusive ways, please talk to someone about it before it gets out of hand. I think it can really help.


    • Anonymous
      December 26, 2007 at 1:30 pm

      Hey Shan,

      Just wanted to say how happy I am for you on getting help and also how proud I am of you. You know if you ever need anything I am here for you.


    • Anonymous
      December 26, 2007 at 2:11 pm

      [B]Shannon My Sweetie,

      Thank you for sharing your story with us. I too have a problem with eating and sometimes I just forget to eat. This has caused me many health problems in the last few months and I was hospitalized even though I haven’t said anything to any of you about it. It has caused heart problems for me, which I should have known that my organs could very well shut down because of my not eating and other crazy dieting that I do. So I now try to make an effort to eat 6 small meals a day and it has helped me greatly.

      I totally agree with you that caregivers often do not take care of themselves.
      Caregivers do need an outside source to talk to about any problems they may be having. There is no shame in what we are feeling and we need any help we can get to help the ones we love get through GBS/CIDP or any other illness. [/B]

    • December 26, 2007 at 6:34 pm

      I am so glad you are seeking help. I will pray for you to get strong and take care of yourself.

      Funny you should mention weight as your way of dealing with things as a caregiver, I have lost 14 pounds in the last month. It has been rough since Kevins port surgery and now the idea of cell cept or another doctor. I am not trying to diet, food just does not comfort me anymore. In my case, I could stand to loose weight, I am 150lbs overweight.

      I wish you stregnth for the new year. If I can ever listen to you, please call me.

    • Anonymous
      December 26, 2007 at 9:05 pm

      Shannon thanks for sharing your story. We are here for you.


    • Anonymous
      December 28, 2007 at 12:41 pm

      Brandy – Thank you for finally sharing your story with us. I always wondered if you were experiencing these issues, based on some of your posts. Since you’ve been hospitalized for not eating, would you mind sharing some of the symptoms that finally led you to go to the hospital? Sometimes, when I stand up or just walk a few feet, I can feel my heart rate speed up, and if I turn suddenly, I feel like I might pass out. There’s also times when I feel like I’m not getting enough oxygen to my brain, and my brain feels like it’s floating. Did you experience that too?

      I’m glad you’re eating six times a day now. I hope to get to that point myself, but I don’t expect it to happen anytime soon. I’m really looking forward to starting therapy.

      Dawn – I’m not in a position to advise you on this, but anorexia has to start somewhere. You may not be too concerned about your 15 lb. weight loss over the course of a month, but that’s a lot of weight to lose that rapidly, and if you’re like me, losing weight will become addictive. I’m so lost in my own little messed up world, that I’m actually jealous of you because I’d like to lose 15 more lbs., and I only weigh 89 lbs. right now. Rationally, I know that’s a stupid thing to say, but it’s how I truly feel. Please try to do your best to avoid becoming like Brandy and me because it may not seem like anything much right now, but it’s not fun after awhile.

      I love you guys, and I’m really glad to have such a close-knit “family” to share these feelings with.



    • Anonymous
      December 28, 2007 at 3:34 pm

      Shannon it sounds to me by your post that you are having enough problems right now to go to the hospital to be admitted so they can give you IV fluids or anything else to give you strength. You don’t want to die and leave Ben all alone

      Please take care of yourself


    • Anonymous
      December 28, 2007 at 5:49 pm

      Hi Sue,

      I try to keep my problems to a minimum by eating a small amount of food for dinner whenever I feel this way. It’s helped so far, but I can’t help but wonder when I might get to the point where I’m bad enough that nothing helps.

      Thank you for your thoughts and concern.



    • Anonymous
      December 30, 2007 at 10:55 pm


      I am a caregiver to my mom…it’s a tough situation. She’s in a facility for strength rehab until her ins kicks her out. After that she will want to go home but cant b/c she’s too sickly and weak. Within the next ten days I have to figure out where she will go and how I will convince her to do so. I have to convince myself that she cant go home, that she cant be alone, that she is no longer the tough independent mom I had…I have to accept that she is dying.

      I do punish myself by not taking care of me….I worry and put everyone else first. I dont know how NOT to do that. I know when I am weakened to the point of needing help but I am afraid to ask.
      I dont know why. As a caregiver…no matter what kind of ailment is involved, it is incredibly hard to put ourselves first. I’d love to learn how to do it.

      I am so glad you reached out for help.

      thank you for sharing your story.


    • Anonymous
      January 1, 2008 at 11:24 am

      [B]Hi Shannon,

      First I want to wish you and Ben A Very Happy New Year.

      I can tell you my symptoms, here’s the list

      Fast Palpatations, like my heart would explode

      Extreme dizziness

      Passing out from non- exertion

      Very slow and skipped heart beats

      Dehydration( possibly causing kidney problems)

      Chest Pain

      Low Oxygen levels

      Blood pressure going through the roof( I have always had very low pressure like 70-80/60. It should be a little higher, but for me that is normal) Normal for most people would be in the range of 120/80 or a little lower, not low like mine though.

      Shannon I need to tell you that all of this is the cardiologists theories, as they also think that my heart could be misfiring due to unspecified cardiac problems. But to date with every crappy cardiology testing, every test is coming back inconclusive. But there is a very strong possibility it is related to my not eating. I am hoping that is all that this is. That is why I have to remind myself to eat 6 very small meals a day. My sons are watcing me like a hawk to make sure I eat when there are at the house. My future daughter-in-law to my middle son is an RN in Cardiology and she watches me to too. I was weighing in at 95 pounds and now I weigh 112, which is exactly where I want to be. I was starting to look like a skeleton. So in reality the cardiologists are still not 100% sure it’s from dieting ,but I’m leaning in their direction of the dieting theory.

      You can shut down your organs by not eating at all or by crazy dieting. Have to let you know that is what happened to Terry Schiavo, her crazy dieting caused her to have a stroke and shut down her organs, when I think about that poor soul, I eat real fast.

      Please try with a few small meals, you will get used to it.

      I am hoping you can learn to deal with all of this ASAP.

      Love Ya Shan[/B]

    • Anonymous
      January 1, 2008 at 6:01 pm

      Shannon, I also want to encourage you to get help. Anorexia is a very difficult problem and can be fatal. As you are aware, it is dangerous when there start to be alterations in the heart/cardiovascular system including irregular heart rates, passing out or almost doing so by inadequate blood supply to the brain. Please be as honest with the psychologist/psychiatrist as you are with us and listen if the medical personnel think hospitalization is needed. It is really hard to reverse the trend of weight loss and to get back to a safer place and sometimes things may get even a little worse before getting better if a person addresses issues and concerns. When someone is a caregiver, they sometimes do not want to think about themselves, but it seems to me that the state of your body right now is rather in a dangerous place and you know this in your heart. I have seen a lot of caregivers not take care of themselves because of using all their energies of those they love who are ill, because of frustration about the unfairness of illness, or sometimes even guilt or wish that the cosmic balance will alter to release those they love if they are affected so. You are a special person and deserve health and peace. We all hope these for you and for Ben.

      With hope for all those that care for people with GBS/CIDP

    • Anonymous
      January 2, 2008 at 7:06 pm

      Wow! Brandy and Shannon…I usually do a lot more reading and very little posting. I’ll scroll down to the “caregivers and family” threads as I think about my adult children and husband and how lucky I am to have them. I tend to keep a lot to myself and not let them know how I am feeling and what is going on, but I know they are aware and worrying all the time.

      I lost a lot of weight after being diagnosed in ’04. Friends and family were very concerned and both my Primary care Dr. and myself related the weight loss to the illness. During my ‘recovery’ phase, and I use the term ‘recovery’ lightly, my father was diagnosed with terminal cancer. I became both patient and caregiver and the weight fell off me.

      Dawn mentioned in this thread that she wasn’t dieting, “food just didn’t comfort her”. What a revalation that was for me. I always related my weight loss to GBS. But looking back, and reading what Brandy and Shannon have written, I think it was more about the other issues in my life in the last 3 years. I have issues with my heart racing and feeling dizzy and it all makes so much more sense now.

      Brandy and Shannon, you have always come across as such strong, motivated and caring individuals…and I am sure you are! But now it’s time to look at your own lives and all you have given. You can only be helpful to those around you who you care for if you are healthy yourselves.
      You’ve made me more aware of those who would be considered my caregivers, and I thank you both for that. Now I ask you, for all of us who need people like yourself, that you take time for yourself!
      Keep us posted on how you are doing!

      Do take care!

    • Anonymous
      February 10, 2008 at 5:58 pm

      Hey guys,

      I wanted to thank everyone for the nice posts. I was reluctant to post this thread initially because I am a very strong individual, and I didn’t want to risk having anyone see my weak side, but in the end, I’m so glad to know that this isn’t just an issue I alone am dealing with! I’m very happy to say that, at least for now, I’m weighing in at 96 lbs., and I feel very healthy and very happy. I’m only 5’2 and have a very small frame, so I don’t care what my BMI says; I feel like this is an acceptable weight for myself. I actually never saw the eating disorder clinician because she had to cancel at the last minute, but I’ll go see her if my old patterns begin to re-develope.

      At any rate, today I went on to a website for organ donors, and I’m hoping to be able to donate a kidney to a 40-year-old woman with a 10-year-old daughter in my area, so I have to stay healthy in order to do that. Unfortunately, I think my eating issues have caused me to have neuroligical problems from vitamin deficiencies, so I need to take care of that, but I hope that won’t keep me from being able to donate. The issues I’m having are mostly with action tremors in my left hand and left leg and foot, and a little bit in my right hand and electrical-like buzzing in my right foot. Which reminds me; I need to look up info. on vitamin B deficiencies.

      You all have a wonderful rest of the weekend!



    • Anonymous
      March 9, 2008 at 6:19 pm

      Well, I thought I was invincible, but I’ve been having heart palpitations for the last week, and my PCP wants me to see the cardiologist and wear a Holter monitor for two days. I had to tell her about the eating issues because I had only talked to my Neurologist about it before. I thought I was out of the woods now that I was up to 99 lbs., but she says I’m still hurting myself from just eating junk food and nothing nutritious. I guess I have a lot to work on. I’m just so relieved that I got help from the Neurologist when I did because, otherwise, I’d be in the hospital right now instead of just dealing with palpitations. So now I guess the Neurologist has saved Ben’s life (with GBS) and now mine.



    • Anonymous
      March 10, 2008 at 10:55 pm

      Shan I am glad your ok and being looked at. You scare me sometimes. You and Ben have been my friends for this whole crazy GBS thing. If you ever need anything, please let me know. Take care and be well.


      The be well is in honor or Gene 🙂

    • Anonymous
      March 11, 2008 at 9:18 am

      I kept checking different threads and such to see if you had responded to anything since January. I was so pleased to see your post once again.
      I am sorry that you need to see a Dr., but soooo glad that you are!
      We all step into a different world when a loved one is gone or when life deals us a bad set of cards, but we need to keep in touch with those around us who care as part of a reality check.
      Please keep us posted on how you are doing.
      I often think what a bazaare set of circumstances have put us all in contact, making it feel like family. “Family” is first in my book, no matter what family it is.
      Take care, stay in touch.

    • Anonymous
      March 22, 2008 at 1:29 am


      I am glad you are seeking help. Are you still having the heart issues? Please follow up on the doc’s suggestions. If it was Ben you would nag him till he got help or found the answers so you didn’t have to worry about it. Don’t you deserve the same attention? YES!! You know you have alot of friends who care about you and are just a call away.


    • Anonymous
      March 28, 2008 at 6:47 pm

      [QUOTE=Shannon]Well, I thought I was invincible, but I’ve been having heart palpitations for the last week, and my PCP wants me to see the cardiologist and wear a Holter monitor for two days. I had to tell her about the eating issues because I had only talked to my Neurologist about it before. I thought I was out of the woods now that I was up to 99 lbs., but she says I’m still hurting myself from just eating junk food and nothing nutritious. I guess I have a lot to work on. I’m just so relieved that I got help from the Neurologist when I did because, otherwise, I’d be in the hospital right now instead of just dealing with palpitations. So now I guess the Neurologist has saved Ben’s life (with GBS) and now mine.



      Hi Shan,

      I am glad you are taking care of yourself finally.This is the same thing that happened to me, heart palpatations. Since I started eating and taking care of myself again, my palpatations have all but disappeared. I notice them whem I haven’t eaten properly which like you I eat a lot of junk food, can’t help it I love junk food. I have been having them again since my bout with this fractured disc in my back, I am eating alot of junk food again, it’s all I want lately, plus for some reason the oxicontin makes me crave junk food , don’t know why. I have been laid up for a month now and can’t wait for this back to heal so I can start taking care of myself again.

      You are a strong woman Shannon and I know you will get back on the healthy track again, just as I will.

      Take care Sweety 🙂

      Love Ya Lots