GBS-Life changing?

I think it is life changing, for me and my family anyway. It sucks, my older son is different, Kevin is different, I don’t even know who I am or what purpose there is for life, it sucks. Cidp has ruined everything and I am sick of it! I am sick of watching Kevie in pain every day, sick of him being sick, sick of everything. Today I do not feel like we are cidp survivor’s, just cidp daily suferers. Thats the truth! I am tired of trying to be positive. Yes, we are weaning down on medicine and Kevin seems to be doing better in that respect, but the permanent pain, mental stress, are too much for anyone.

Carolyn & Dawn,

I got GBS Oct. 07. I am in the wheel chair most of the time .
It is very life changing not only for those of us going through it but for our loved ones as well.

I feel so bad for both of you.

Carolyn, you have made good recovery this last year. You can never tell about the residuals if they will go away. Keep moving forward for you, your husband and those young sons.

Dawn, you may have your down times but you are a stong person and great mother always there for Kevin.

Wishing you both better days and sending you lots of hugs.
Shirley

[SIZE=”3″]My sweet Dawn.
I feel your pain and would love to remove it[SIZE=”4″] You give so much of self to others and to your children. I pray for you and going to put you on a prayer circle for peace and rest and calminess and good health for everyone.I am so glad you let out your pain to share with us.
Crlyn you are being blessed with your recovery and pray it continues.
Dawn smile 🙂 😀 and always know you will always be in my prayers and unconditional friend.
Your loveing friend Steve [/SIZE][/SIZE]

I think any illness is life changing. I think every day something happens in life that changes it. It’s the beauty of living.

My daughter has CIDP. She was diagnosed at 4. I was a total wreck but I decided that we had CIDP – CIDP does not & will not have us.

Of course we all have our down days (or months) but I think it’s important to try to remember that life has to go on.

When I’m feeling down I try to remember the good things Emily can do. While she may not be able to touch her toes while bending over – she can ride her bike. Heck, I’m just happy she can walk.

Maybe, when you are feeling down because you can’t run with the kids, get out the hose & spray them. Try to find the fun in what you CAN do & try to not let the things you can’t do get you down. I know it’s easier said than done though. It’s ok to feel sad sometimes but try to not let it get you down.

You are still alive! You still have your children! That’s what matters most.

And remember, half of Hollywood can’t smile either but they paid big bucks for their Botox injections, LOL.

Kelly

Hi, Carolyn, no, you don’t have to accept that you will never be normal again. I tend to be somewhat of a rebel, but in my book you are way too young to believe that you are locked in. GBS is so difficult due to the long recovery time, and all of our spirits take a beating from the daily grind of this disease. However, over the years science and medicine make incredible leaps and discoveries. Hang in there! There will be a break in these diseases which will lessen the occurrence and speed the recoveries. As a friend of mine says about doctors, “there’s a reason it’s called a practice”. Much of medicine is trial and error. There may not be an answer today, but there may be one two months from now. In your lifetime, you will probably see huge advances in this area. Good luck, and I’ll be hoping for a speedier recovery for you! Andrea

Carolyn,

Recovering from a devastating illness reminds how humbling life can be….and how unfair. I’m not convinced about the adage “when life gives you lemons, make lemonade”. It’s not that simple. Instead, I’ve found that when adversity happens, coping is made easier through faith, family and friends.

Faith gives me the strength to make it through another day, not knowing what tomorrow brings (pain, sorrow, peace, relief).

Family is there to support me during the toughest times, to hold my hand and give unconditional love.

Friends are those that came to visit, sent a card or lifted me up in prayer, providing me with encouragement and comfort.

George Eliot (a woman) wrote these words that have helped give me solace over the years. “Let us look at the good of life a little apart from our own particular sorrow”. Try not to let yourself get down, find a positve in your life and build on it. Use others to help you through the rough times. And know how important and what a difference you make in the lives of those around you. Tom

I try to acknowledge any improvement that has occurred throughout this time with GBS, since November’s flu shot in 2007.
Although the pain is still there, and I get bad flareups, it has lessened.
Although I still use a medical walker and a cane, I can do my errands.
The right side of my face has some mobility now, and my mouth can smile on that side a little, instead of drooping down. 😎
My fingernails are more normal looking, though during relapses they become abnormal again.
Most of my hair that fell out has grown back.
Most of my hearing has returned.
I have stopped drooling, except occasionally.:o
My vision has improved, though there’s still a lot of disturbance.
My headaches have lessened…I drink grapejuice daily, and also apple cider vinegar drinks, and that helped a lot.
I can control my bowels again most of the time.
Though my short-term memory is very poor now:confused: , I can still remember things from long ago.

There is still happiness to be found and enjoyed.
Life goes on…even with GBS….bad GBS….I’d kick you in the butt if I could lift my foot GBS.:p

Hi Carolyn,

I do know exactly what you are feeling. Exactly. I am nine years post my GBS. You are still [U]very[/U], [U]very[/U], early in your recovery, so [U]please[/U] do not give up hope. The fact that you are back to work is amazing!! You should be so proud of yourself and how hard you have fought for your recovery.

My GBS descended and ascended at the same time, feet went numb, and facial paralysis started at the same time, then the paralysis met over my respiratory muscles.

No two cases of GBS are ever, ever, alike. We all have common traits but the pattern of nerve and myelin destruction is unique to each survivor, so please don’t compare yourself to others also.

I had motor nerve improvement for about four years post diagnosis, and even at nine years out I am still having the odd tiny improvement with my sensory nerves.

Yes, I have residual paralysis in my face, and I am still coming to terms with the fact that my smile will be forever crooked. (I have learned to tilt my head to one side in photos which may make me look like a crazy supermodel, but it does help even the smile out…….:)

It may sound odd but I remember at the acute stage of my GBS being hooked up to life support and thinking how sad it would be if I could never smile again, I think at that stage that bothered me more than the question of whether I would ever walk again…strange I know….

I remember telling my family doctor once I had returned home from hospital that I was starting to feel guilty that I wanted SO much more for my recovery, ie//at first I was just happy to be able to sit in a wheelchair, then I longed to walk again with a walker, then a cane, then without a cane, etc. I told him that I felt selfish for wanting so much more when in the beginning I just wanted to survive.

He told me that it is the desire to regain the life you had prior to GBS that pushes you along in your recovery, it motivates and drives you, and it is all part of the normal healing progress. He told me that he would be worried if I didn’t reach a goal and then want more, and more, and more……so please take comfort in the fact that what you are feeling is [U]so[/U] normal……

You have already proven yourself a strong warrior woman, you have survived GBS and you will learn to [U]thrive[/U] with your “new normal”……..

my very best wishes to you,
cg

Hi Carolyn and all: You might check the forum for other discussion of residuals. Residuals do change our lives, sometimes for ever and sometimes just at times. People do get better to one degree or another. I am in a wheel chair outside the home and have residual pain and fatigue, and rather than fight the changes I have tried to build my life around them. I know the limitations and live within them-if they get better great. For me there has been no change for 3 years, but who knows? It is important to accept our reality without giving up hope. I have just been diagnosed with another autoimmune disease and I must admit it is very hard to deal with this on top of every thing else, but what can we do? Every time it flares I have to go to the hospital, loose a few weeks of work and pay, and just chrash. But my wife and I just have to accept this as part of our reality and enjoy the times it is not with us. There is no support group of autoimmune recurrent pericarditis as it is pretty rare, so I have to come here for support for that as well. I will try not to complain too much about it, but it is pretty awful when it hits.
Dawn: I too feel your pain. It is ok to melt down from time to time-no one can be strong all the time. The last time I was in the hospital my wife was so upset she could barely bring herself to visit and I could totally relate. Who takes care of her? I can only imagine watching my child go through CIDP, but as a psychologist I can tell you in the long run Kevin will have learned so much from going through this that he will be a better person. So long as he doesn’t let it all bury him. That is where you are such a great help to him. But care givers have to chrash too. Your hope will come back and your strength is always there even when you can’t feel it. I too will pray for you and Kevin.
Jeff

I was diagnosed with GBS in August 2001 after having a kidney transplant in May 2001. Now, in December of 2009, I [U]still[/U] feel different. I have occasional bouts of fatigue and have learned to “listen” to my body. When I am tired, I sit down. My stamina is very low and I get tired walking very short distances. If I stand still for a few minutes, I can move on but not for very long. It is very frustrating and I get angry but this is my life and I have made adjustments. And it has been hard on my family but after all these years, they have adjusted too. GBS is a horrible illness and is merciless but I thank God I am alive to be able to tell you all this!