People just don’t understand!

hey Armando

I get what you are saying and hear you my GBS brother. I love how you said that the temple is turned inside out. That’s how I describe how my hands and midriff area but I add that they were dragged along the ground.

You being back at work is amazing, kudos. And friggin’ basketball?? I tried to hop the other day and almost fell over! You rock Dude!

Everybody who doesn’t get it can (bleep!) and I would take no prisoners.

I have found that listening to heavy metal music has been a great help. It often reflected how I was feeling and gave me a place to privately vent my frustrations. THe i-pod has been a life saver. I’m so glad that my hearing wasn’t affected by GBS and that my headaches were minor.

Dude, you are rocking your way out of ssomething that healthy people just cannot comprehend. They are going about their day as much as we might be if we didn’t have GBS.

Personally, I am going to take a lesson about life out of all this. I cannot believe some the stupid things that used to irk me. This freakin’ syndrome will be a blessing in disguise if it sweeps away my former (at times) a**hole self. I hope that I will never be the same as I was in ways.

With regards to my body, I am going to come back better than ever or die trying.

peace to my GBS family

Armondo you will find that you are not alone in this no respect business ! And I love your eagerness to fight and your statement about the challenge.
Guitarguy…I am a hard rocker turned country girl with a whole lotta rock left in me and I agree that blasting that music is one heck of a release !

Your names are new to me but I’ve been here for almost 4 years and until recently, was told I had cidp. I did a ton of ivig and some steroids for a short time and nothing was helping me. I got worse by the day. I still work full time but it’s a struggle…and becoming more of one, each day. I have a desk job so I’m lucky. As long as I can hobble in, I’m ok. I’m a wife and a mom and we live in a pretty big house that I try to keep clean. My life isnt easy for someone like me.
I have CMT or charcot marie tooth 1a. Lots like cidp only it’s in the muscular dystrophy family and there is not only no cure but no treatment…oh, and, it’s hereditary.

I dont get respect, I think, b/c I dont tell the whole truth. I dont want anyone to know how hard it is to walk. I dont want anyone to know how it hurts. I might complain from time to time…but I dont “come clean with it”. I’m embarassed by the way I am. And, I dont want my family to worry. My husband and son. The rest of my family know I have this…they tell me to rest. My co workers know and they are likely taking dibs on when I’ll go out on disability.

I’m confused about the sympathy part. Like you, I dont want anyone to feel sorry for me…I think I just want more understanding. And, when someone figures out how to explain these whacked out diseases enough for someone to understand, I’ll be the first in line to get that answer.

People dont know how hard it is to move, to walk, to climb stairs, to write, or to get out of bed to use the bathroom. They dont know the pain of electrical shocks or what it really feels like to walk on broken glass. I cant walk barefoot anymore…not for long b/c it’s the broken glass for me.

I’ve learned that sometimes less is more. But, I’ve also learned that if you are down and you need some sympathy or respect or admiration for your accomplishments…come here…this family will always be here to encourage you !

I’m not a “cidp’er” anymore…but I’m still here. These folks are a family I’ll never walk away from. Or crawl, or roll, however….:rolleyes:

AWESOME that you are doing so well, so fast ! You have my respect…no doubt !
Hold close the ones that love you…

Stacey

You did not mention WHY you think you got GBS……my guess is that we put too much stress upon our “temples”….whether it be an immunization, giving up smoking, triathalons,etc…..I have found that most people I talk to were run down to begin with and then they did the final thing that caused their body to say THAT”S IT!!! And the body shortcircuited. Does this sound at all familiar to your situation?
I think that people do not give us as much respect for this Horrendous syndrome because they have not heard of it. I was reading a book that had a section title which said Guillain-Barre(French Polio)……we have survived Polio……(French because the name comes from 2 French doctors’ names) If you use French polio, you should get more respect……
Be careful to not push yourself with exercise…..your body is still repairing…..be kind to it……if you broke a leg, you would favor it for a while.
Glad you are accepting this as a challenge…..just be kind to your temple. In everything there is a lesson…..what lesson have you learned…?

GBS Spring 1986
GBS Fall 2006

Armando,

I remember going through the same thing in the beginning, very upset and frustrated with people who did not understand and provide a lot of sympathy. Even my immediate family was not very helpful. What it boils down to is your spouse and your kids and if you are lucky a few family members and/or friends that will be supportive. I want to play Devil’s Advocate…put yourself in their shoes. Could you possibly understand what you have gone through if you had not? Understand the weird sensations, the pain, the despair, etc?

People want to believe that people get better immediately and cannot understand chronic conditions and don’t want to think about this. I had people saying to me months afterwards, family members that is, “well, you are better, right?” No I am not and may never be the same again. It is a loss of self and prior life that you have to get used to and to adapt to the new you and new life. I just smile and nod now, and don’t talk about it anymore except to my husband. I started seeing a therapist about 2 months ago and this helps a lot in having someone else to vent to. I would recommend it.

The more time goes on though, the better things will be, and you won’t think about other people’s reactions as much. Congrats to you on pushing through it! I did the same thing, and that is what keeps me going. One day at a time, one foot in front of the other…..

Armando, that is how mine started with the flu shot. I had the seasonal in Sept and the H1N1 in November. I think if you have a preexisting stomach issue, you are more predisposed to a reaction. I had a stomach virus in July, so it was a combination of things, but the flu shot triggered the whole disaster for me too. NEVER ever get the flu shot again….and I would issue a warning to all on here not to get it!

Armando,
I don’t think it’s lack of care, but just hard to comprehend if you haven’t been there. Would you personally believe something like this if someone had told you about it? I is pretty incomprehensible.

Armando
I was thinking more of your joining a basketball league…that might be a bit strenuous on an already tenuous situation with your healing. I know that if I am on my feet too long, my right foot goes numb and if I carry groceries too long, my hands hurt for the next few days…and this is four years later.
I suggest when your sweet one-year-old is sleeping, you read some of the many threads on this site..you can familiarize yourself with GBS .and wind up learning more than the doctors know from those that have survived it. As for immunizations, I would not get one if you gave me a million dollars…..the so-called benefits are not worth the risk. Also from this site you can see what other doctors have said about them…and not just believe what one doctor/yours has said.

Armondo – Thank you for starting this thread. I am currently going through a very frustrating period of life (applying for SS disability) and no one understands. Also, my bf just moved back from CA after being away for 13 years. She’s trying to figure me out but then suggests I go river rafting with her and her son – NOT.

Carolyn – I felt your question… why did this happen to us? I admit I was abusing my body in many ways especially the stress of splitting up with the love of my life. Six months after 5 year relationship was over, I got GBS. So I obviously made time in my life to grieve slower – everything slower.

You all are the best!

Chrissy,
Don’t you think that the majority of us in some way overextended our bodies whether it was the stress of a relationship ending or stomach flu or whatever?? My taking care of my mother for five years and then her passing really did me in But I think the final straw for me was eating tomatoes. I remember that my right foot started getting a little numb and my doctor said not to worry, they have stuff that will stop me from getting GBS again. HA!!
So optomistically I figured it would not progress. Even when I was dragging my right foot in order to walk, I never thought it would progress to my not being able to stand for 5 months. I think the tomatoes kicked my body into full-blown inflammation…2 years later I was eating a delicious Jersey tomato a day and it created a painful bursitis in my shoulder. Cutting out tomatoes stopped the pain. Can you imagine if I were to have gone to a doctor, he most likely would have prescribed a steroid and I would have kept on eating the tomatoes. . What are the odds that he would have asked me about tomatoes?? Hindsight is great….isn’t it?? It sounds like your breakup put you on the path to GBS….can you think of something that kicked it over?? Or perhaps it was something that did not stand out (like tomatoes) Luckily I knew that many cases of arthritis are brought on by eating potatoes or tomatoes.
We need to do everything in moderation and like you said, “everything slower.” I liked that. After reading one of Deepak Chopra’s books, I use one of his ideas -Live each day as if you have all the time in the world.( He called it functional immortality.)

Armando, I have to respectfully disagree with you about the flu vaccine. I got the seasonal one last Sept and the H1N1 in November so obviously, I was on board with vaccines and protecting my family etc. It has been proven now that the CDC and the media hyped the H1N1 vaccine and created mass hysteria. More people died from the seasonal flu than the H1N1 last year. Yes, the flu is dangerous, but many people fight it off without a vaccine. Vaccines have eliminated and eradicated a lot of diseases, so they are wonderful things in many ways. But I am living proof of the 1 in a million or 100,000 or whatever it is, that they can be dangerous. After being very, very sick, not being able to eat and losing 25 lbs, 9 months later, I have fatigue, chronic pain in my muscles and joints, dry eyes/mouth, nausea, etc. Yes, I am glad to be alive and have recovered from the worst of it, but this is no way for a 39 year old mother of 2 to live and this may be the way it is for the rest of my life. Is that worth it to pay for the price of getting the flu and recovering? No. Obviously, I am biased, but I wanted to throw my 2 cents out there. I will never be getting another flu vaccine again and I do not think that my kids will be getting one either. After what I have been through and am still going through, I would not wish it on anybody, not even my worst enemy. It is like being trapped in a nightmare of a body and having no control on a daily basis. Hope that you have a better recovery than I do and can look back at this as a blip, but I have been scarred for life from this.

I agree with you Armando and that is the reason that I got the shots too, because I wanted to protect my kids and to not miss work. That is the irony of it, and I think that we made the best decision at the time regardless and we can’t dwell on it. We can only learn from it and move forward. As it was, I had to work from home for a month, which was probably was a lot longer than if I had just gotten the flu.

On the flip side, one of my doctors actually got the H1N1 flu and she is in her mid 30s, in the higher risk group. She developed severe lung problems and when I saw her, said that she had difficulty walking down the hall, exercising. She too went from being fully functional to having her abilities limited so she could relate. We actually almost hugged each other because we were in the same boat, professionals and moms, who lead a very active life, and having these changes thrust upon us.

So, on one hand, get the flu shot and be one in a million to have an adverse reaction or risk getting the flu and complications? It is a tough call, but knowing what I know now, and being in that group that didn’t think that I was that one in a million like you, I would now choose the latter. It’s a personal choice for everyone and neither choice is right or wrong, but I think that the public should be more educated about the risks of getting the vaccines. I know that all of my coworkers who saw me walking around slowly and skeletal and my friends have all said that they did not get the H1N1 shot because of what happened to me.

It is not 1 in a million. Those stats are wrong.
In the small town where I live, one person got the sudden acute form of GBS and was hospitalized, I also got it and it crippled me and gave me stroke symptoms on both sides of my body, and it wasn’t medically acknowledged or dealt with for over 2 years. In the city only a few miles away, at least 1 person got it and that case made the newspapers. So that’s 3 cases, that I know of, in a population of less than 100,000 people, immediately after getting the 2007 flu shot. And don’t forget all of the cases that go undiagnosed and misdiagnosed, and the ones that get ignored. These are not even reported to the Medical Association to become part of the real statistics on this matter.