Support Systems?

    • Anonymous
      December 2, 2007 at 7:39 pm

      I’m so stressed out that Im having a relapse because of it. The only family I have is the wife and kids and her family, which basically adds up to nothing as far as my personal well being goes.
      Do all of you guys have strong support groups at home? This stress is killing me. Literally.
      I know many here take the happy pills. I can’t do that and stay on top of my medical, financial and personal business and no one else will if I don’t. I tried a psychiatrist and he just wanted to medicate me, beyond normal levels too – where’s tom cruise????
      I tried counseling with a psychologist. She told me she was a medicated bipolar ๐Ÿ˜ฎ she started talking about death when I mentioned my illness ๐Ÿ˜ฎ
      I didn’t bother going back there.

      My only happy pill is my 2yr old smiling at me or doing something hilarious.

      I guess this is my only support group ๐Ÿ˜ฎ ๐Ÿ˜‰

    • Anonymous
      December 2, 2007 at 11:01 pm

      I am in the same situation as you. No support group, no one really understands what I am going through. I live in a small village…I have to travel 2 hours each way to get to hospital. No one here has ever heard of GBS or CIDP and I have to admit I never heard of it before the neurologist told me that’s what I have!

      But the wonderful thing that we have is this site!!!!

      Use it when you are feeling down, blue, happy, sad or just don’t know how to feel.

      Someone will answer the call and be there ready to help
      Take a deep breath, and type away. ๐Ÿ˜‰


    • Anonymous
      December 3, 2007 at 7:45 am

      It’s amazing what our children can do to brighten our days. I hold on to my son daily, I remember what he does that is funny, or sweet, or silly, or smart.
      I cherish his laughter, his hugs and unconditional love. It gets me thru the toughest of times.

      I know…someday he’ll be a teenager and I’ll no longer be his “best girl” or his hero…so for now…I savor every second.

      Grawplyr, if it’s all that you have to help you thru…hold on and dont let go.

      and, then, at the end of the day…come here to vent and know that WE are here for you, too. ๐Ÿ˜‰

      I dont have alot of “support”…my hubby listens, and helps in any way that he can…my sisters, my mom…they dont REALLY understand…I feel like they dont believe me when I am weak or hurting or so tired I can barely move. So, I keep going, I dont rest, and pretend to be ok b/c I dont want them to think I use CIDP to get out of doing my part in our family stress right now.
      I want to say that I need a break…I need a day to lay on the couch…but, I cant right now. I really just cant. My mom is very sick and I dont know how long she’ll be here. Someday, I will rest…
      And my friends or co-workers…yeah, forget it…they have no clue about this disease and I’m very tired of explaining it to them.

      This forum is my biggest support group, indeed.

    • December 3, 2007 at 12:22 pm


      I am sorry your support at home is lacking. It really sucks. We have the same problem here. Because Kevie looks normal, my husband just doesn’t get it, I don’t think he wants to get it. His family is useless. Every time that Kevin was in the hospital, they never even called or visited. Half of them did not even show up for Kevin’s family party yesterday.

      I have come to this conclusion. Some people fall into the denial category and just pretend like nothing is wrong (my husband) and others are just selfish and mean. Probably always were and will be lacking in the compassion department.

      One positive thing both Kevin and myself have learned, is that this illness has made us stronger as individuals. We are more aware of others needs, we have learned to deal with ups and downs without the aid of others (not including the kind people on this site) and we get happy about little things that really count!

      I figured out that I can’t make people care that Kevin is sick and he goes through alot for a ten year old, but I CAN let them know that their behavior irritates me and is selfish. Believe me, I have told them in so many words!

      So, there just comes a time when we have to forget about support from others and we become our own support.

      I am in agreement with you regarding the meds. I was considering them for myself, but I too did not feel like I would be on top of my game for Kevin. I also feel that the meds will only temporarily take care of helping me. Once I get off of them, the illness will still be there. I think my decsion has for the most part, worked out well. I feel that since the start of this journey I have become more composed and less cofused and desperate. I am not sure if I would have accomplished that while on meds.

      That being said, meds are of course an individual choice. Some people may need them to get them through this period of adjustment to gbs/cidp.

      I am glad that you feel comforted by the support on this site. It has been a blessing for me as well in some of my darkest times. It actually helped me to realize that there are still people who are kind and considerate and care about others!

      Best wishes to you and keep on enjoying your two year old!
      Dawn Kevies mom

    • Anonymous
      December 3, 2007 at 2:28 pm

      I have my husband(Very supportive) and a son that is 14.

      You know that you can still cuddle and love your teens as much as the two year olds but the best part is he wants to cuddle and be with mom.

      I am enjoying every moment cause I know it won’t be long and I’ll be replaced by a girlfriend.

      Enjoy all the little things and try to forget the stressful things!


    • Anonymous
      December 3, 2007 at 5:15 pm

      I was just wondering why I still come to this site every day after over 5 1/2 years. I know I am as good as I will ever get, I also think I know as much about CIDP as any lay person can understand. I do have a loving & really wonderful husband who took care of me religiously for the first 2 1/2 years when I was unable to do much of anything but watch TV & sleep. I have 3 grown wonderful kids who try hard to understand this illness.

      But I come here because really only you people can truly understand what it feels like to feel the fatigue, the pain, & the desire to be as we once were. My husband can try to understand all he wants, but he will never truly know all that I have lost. So to all of you on this forum, I say thank you & I try to help you out whenever I can with my knowledge of this strange illness.
      Blessings, Pam

    • Anonymous
      December 3, 2007 at 5:30 pm

      I have a few friends that were scared more than me when I was taken to the hospital. In such a panic they could not even visit or call the hospital. Some friends don’t bother to call because they knew I could not leave the house to go shopping or to lunch. Everyone seeded to have their own excuses. I do realize they have their own lives but what did I see in them in the first place? We spent alot of time together. So after thinking about this I seen that many people are not able to be caregivers. They are not nurturing and don’t know what to ask. They did not have nurturing parents and some have never been ill themselves. Others have not had to take care of a pet, not to mention take care of a sibling or spouse. Then you get what I call the Want-a-be Nurses. They can not let you do a thing for yourself. They want to feed you a pot of chicken soup a day to make you well. They talk non stop and when you fall asleep they wake you up to see if you are ok. As you take a pill or a spoonful of soup they open their mouth up to help it go down easier! I just get my pillow in the right spot and they come over and move the pillow and straighten up the blanket so it is not tucked under my feet. They move my kleenex to the top of the dresser across the room and they add more ice to my glass of water that just had become warm enough for me to drink it comfortablly without getting brain freeze. Oh and they mix my food all together with my mashed potatoes so it is easier for me to eat! They blow on my food to make sure it is not too hot! Heck it was sitting out on the counter for 15 minutes before they remembered to bring it to me. Believe me it is not hot anymore! I just sit back like the Princess and loved to watch people struggle to figure out what I needed! I would not have traded them for anything! Oh and to the mystery neighbor that brought my trash cans and recycle bins up to the garage door and I never found out who you were. I thank you! By the way they are blowing down the street today!

      As far as a reliable support group I have my husband and my son (32). Between these two guys I had caring support. When they were going to eat they asked me if I wanted something to eat or drink. When they went to the store they asked if I needed anything. They let me keep my dignity, privacy and independence, but they were there doing things around the house and working and checking on me in one way or another. If something needed done and they did not notice I could mention it to them and they would do it without complaining. Even two years later there are still many things I am not able to do consistantly. I do what I can. Some things don’t get done until I take time to do them. Not having the strenght or energy still keeps me from doing everything I used to but it does not matter these guys are guys and not perfect! I take second place when it comes to sports on tv or a good guy movie or something on the History Channel. I still would not have traded them either! The dogs are not on my schedule anymore and don’t like to eat what I feed them. I tell them sit and they lay down. They don’t like to come when I call them! I call them and they run to my husband! What is up with that? I have lost control! Hope you see how important it is to laugh at this all and be thankful for what we do have, it can always be worse! Your right, once you look better, the less support is offered. IT is the law! I am not sure where it is written. I must be looking really good now! I must be more beautiful than before! No one calls and no one makes me lunch or dinner any more. No one calls to invite us to their house for holidays. I guess our routines all change! I hope they call for help! I remember what they offered and how irritating they were. I will return that back to them double! I can move a box of Kleenex to the other room rather across the room! I can freeze their glass of water solid! I am writting a book on how to be a good caregiver! It will be a comedy! I am sure you could help me write a few chapters. Laughter is the best medicine! Some can only offer a smile, some a hug and some some tears! What I need is laughter! Fill my house with laughter I don’t live in a library, hospital, a funeral home or even church. If you visit, bring laughter with you! With the holidays coming up I am going to make sure I bring smiles, hugs and most of all laughter with me! As someone always says….if life gives you lemons, make lemonaide! Don’t get mad, get even! What goes around comes around! Life has taught me to be patient! We were not all created equal! Hope things get better for everyone!

    • December 3, 2007 at 8:03 pm


      If you needed glasses you would wear them. If you needed insulin you would learn to take the shots. It sounds to me like you need the correct dosage of the appropriate antidepressant. Once you have become accustomed to the proper pills you should not be in any excessive mental fog. Of course this assumes you find a practitioner you trust.

      I have no medical proof but I have always thought that CIDP causes depression. Not just situational distress – but actual biochemical changes in our bodies.

      Please reconsider your distain of “happy pills”.

      I have been diagnosed with CIDP for 8 years. Over time almost all my friends have scurried on with their lives and I don’t mind. To have a friend you must be a friend – and I just don’t have the energy to be involved in group activities. Lots of days just getting dressed is a major accomplishment for me.

      The folks here on the forum are probably the only people who truly understand your frustrations. Most people can’t understand an invisible illness like CIDP. If you have stressors in your life that you cannot avoid, then you need to give yourself permission to actively ask for help. If there are people who you must constantly remind of your limitations then perhaps you should consider distancing yourself from them. There’s no rule that says family can’t be jerks.

      You need to conserve your “good” times for your child.

      Before I hop down from my soap box, I would like to encourage you to consider nutritional supplements to be certain that you are giving your body adequate resources for fighting the CIDP. This is a really steressful time of year even for healthy people.

      Warm hugs,

    • Anonymous
      December 9, 2007 at 3:57 am

      When I do go out I have made the big struggle to get ready with a smile, clean clothes and hair.Sometimes I’m so tired from this I sorta stagger but am determined. Get so embarrassed when I can’t follow through with friend plans I hide out. Tell someone about IVIG 3 days every other week and the side effects??? They can’t possible understand. Do they even care??

      Family? My dad was a doctor and I begged him to help me find medical help-he didn’t listen. My sister doesn’t want to hear one word. She’s a therapist. My family is actually mad at me like I got this on purpose…..
      Last week I was on the sofa the whole time in the same pajamas with my “doesn’t matter as long as you love/feed me” cat. I figured it was really okay-just me and the cat. He’s excellent company.

      There are some good therapists out there. CIDP and just plain living causes stress. Here it is Xmas time and so many are already over-stressed by crazy parking lot driving and shopping. Be glad to sleep/rest and not be involved with it. Yesterday a woman rear ended my car and got out screaming she was in the middle of a divorce-how was that suppose to help the situation???
      (That really did happen”’)

      At the IVIG clinic and other places I can’t begin to tell you how many crying folks I’ve hugged-they needed that and they sobbed loudly and held on harder. We need to share and care-that’s so important.

    • Anonymous
      December 9, 2007 at 9:54 am

      I’m sorry you are going through all of this. I have a 3-3/4 year old with cidp. He was dx. at 19 months and contracted cidp at 5-8 months.

      I got on a drug after Dell was misdiagnosed with a fatal disease. The way it worked on me was.. it stopped my crying all day. It did not put me in a fog. I got it from my obgyn and he gave me samples to start. It took about 2 weeks to kick in.

      I’m not on anything now but sometimes I feel like I need it. We have 2 others and I’m a stay at home mom. Sometimes, the stress is very great but usually, the next day is better.

      Do you have a family dr. that has experience in prescribing something that would not put you in a fog?

      Good luck,

    • Anonymous
      December 9, 2007 at 12:09 pm

      I’m very forunate. I have a husband that is doing everything. I can see where he is like is this ever going to end, but he keeps on trucking. He is understanding and knows i do what i can, but even he gets tired of the strain of being caregiver 24/7. And to think, this may be the new me, is very scary.
      I am extremey limited in what i can do at present and it has only taken six weeks to go from fully indepenent to on a walker.
      Friends are still staying in touch on occas. but they do not understand. No matter how hard try they do not.
      They do not get that i physically can not do it. I can not go to stores, drive, do lunch, dinner, etc. I no longer try to explain. I just say no. In fact it is easier to say no, than attempt to explain.
      I’ve decided no one can truly understand, expect the people on this forum, that are living with it.
      You have to loose your abilities to be independent, prior to knowing what it does mentally, physically, and spirituality.
      I, am now the Michilen Tire Lady, due to the high dose of Prednisone and have really swollen up. So much for self image.
      Each day, I now tell myself “i am more than a CIDP pateint. If God brought me to this, he will get me through it.”
      I, also, was started on a dose of anti-depressandt, “Prozac” which I am finding helpful in dealing with the stress and anxiety.

    • Anonymous
      December 10, 2007 at 2:28 am

      Wow. I wanna say thank you to all of you. I feel better knowing that my plight is not unknown. I also feel sad that so many of you are going through the same problems. To you parents, you are braver than me. I could not bear dealing with this being put upon my children.

      FLossy I will look into the supplements but antidepressants won’t happen. I’ve tried a few and if I use them or even the neurontin for my nerve pain, I will be seeing my children on weekends during my stay at the managed care facility. My legs may not work right but without my mind I might as well not exist.

      Why is it that those who claim to love us often seem not to care? Oh well.

      No rest for the weary. I almost flunked my first classes back to school because of this crap. At least I can complain to you guys ๐Ÿ™‚