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Living with Polyneuropathy CIDP, GBS, & CMT

Depressed with GBS


#1

I have had GBS for over 1.5 years and my recovery just seems to be so slow! I am walking with a walker and in physical therapy, but my muscles are so tight I can’t get into my new orthotics. And then the therapists said I may never be 100% again. I know I sound whiney and ungrateful, but I just want my life back! I’m tired of taking 10 breaks to put away 1 load of laundry or of my nerves burning so bad i just want to sit and cry. Im exhausting my family with my literal exhaustion, and they have never been interested in listening to me if I need to vent.

I don’t know where else to go, I’m crying everyday I’m so frustrated and feel so alone. I don’t care how much progress I’ve made, I’m exhausted. I just want one thing to be easy.

Thanks for letting me vent, if nothing else.


#2

Hi Love4doxies -

May 11th made it 5 years since coming down with GBS. I would guess I’m about 80% recovered. My core muscles are still weak, My leg muscles are not as strong as they used to be and I get tired really fast, oh and my feet still tingles a little. We all recover differently but patience is the one key ingredient in everyone’s recovery. I have come to terms that I may never be 100% back, but I’ve come to grips with that. Think of it this way, you’re blessed with the ability to walk use your upper extremities. I know it’s difficult at times but stay positive and keep working on your PT. God Bless.


#3

Hello Love4doxies,
I feel your frustration. My onset of GBS was July 2012. I was told I would never walk again. You are exactly where I was 1.5 years into this GBS. At 2 years I went back to a part time job(10-12 hours wk). At 2-1/2 years I bumped up that week to 25 hours.
By the way, at 3 years I finally could lift my leg to put my socks on. Last fall I became full time at 40 hours.
My doctor stated that my will and my attitude is what brought me through(add daily prayers). I was never a patient man but I learned that a little exercise each day and not overdoing anything helped me regain a lot of what was lost. Yes, I am tired and I could nod off if I sit down and watch TV. I just let that happen. Please have patience. You have a ways to go but I encourage you to have a positive mindset. I am proof of what is possible and you will also. As for the family not being interested is their way of saying “you don’t look sick”. As you know, no one knows what GBS is except for yourself and others like myself.
You’re going to be fine. Anytime you need to vent, please post on this site and I will be happy to listen and provide additional support. There are many of us that will support you. God Bless also.


#4

Also, are you a doxie owner? I have a long hair mini doxie name Bella. She helped me through the difficult times during my recovery.


#5

Thank you very much for the support. 5 years. I’ve been in rehab and nursing homes for my 1.5 years. I just returned home April 28th. If it weren’t for my mini Dixie, Gus, I would cry all of the time. I hope to return to work part time in the future (I’m a teacher) but my job requires a LOT of energy and movement. At least, that’s how I was before GBS.

I know there is a light at the end of this tunnel, I just needed to see some rays. Thanks again for listening. It just helps knowing and talking with survivors.

Ps Gus and I have been inseparable since I have been home, they really are such a sensitive and loving breed. He’s a short haired red coat.


#6

40 hours?! Awesome for you!!:grin: thank you for your support and sharing your story. Part of my depression stems from feeling isolated from people who are experiencing or have experienced GBS and its fun symptoms.

I have medication for the depression, anxiety; but having this forum will help I think. I meditate and pray for patience. I’ve never really had it for myself, so that in itself is something new too; I realize my life is forever changed now, but I just get overwhelmed by it all some days.

Thank you for reaching out.


#7

A few simple words can go a long way. Here’s a few that I go by.
Laugh a lot. Live a lot and Love a lot.
You are showing that you are a fighter and this GBS thing will not take you down any further. I admire your strength.
Life is full of changes. This GBS part lets us appreciate the life we have without any regrets.
Stay strong, put on a smile and thank God for all we have.
We’ll talk again.


#8

By the way, I work at an ACE Hardware ( the helpful hardware man) which means I am on my feet 8 hours a day.

I’m also doing some of that fun stuff like loading Top Soil, Mulch, and 60 lb bags of concrete. Yeah I know I shouldn’t but just to prove a point that I can makes me feel good. Don’t worry, I don’t load multiple bags, just a few at a time.

A few people that knew me before GBS and now after GBS say I’m a walking miracle. Yes I’m showing off but it puts that smile on my face.

Contact me anytime.

I’ll be here for you.


#9

I’m not sure how to reply to you. I would love to spout platitudes and say everything will be all right and you will make a full recovery but that would be disingenuous. It’s been three years since I contracted GBS. Mine was a severe case which included a long time on a ventilator. I was left with what appears to be permanent nerve damage on my left side and I have to wear an AFO to walk. I also think I had some lung damage due to the ventilator and get very short of breath even with limited exertion.

I was lucky in some ways. I had a desk job so I was able to go back to work while still in a wheelchair. I was in my early 60s so after a year and a half of working I was able to retire. My wife was able to retire 3 months later.

Before GBS I liked to hike in the mountains, I could walk for hours and go wherever I wanted. Now my mobility is limited and actually seems to be getting worse. When my wife realized this she tried to help me but I would fight her, insisting that I would continue to improve. I didn’t want to be the guy who needed help. Last December she finally talked me into getting a mobility scooter and it’s been a life changer. I’m now able to go places with my wife and not slow her down or have to go back to the car and wait.

Do I miss my old life? Damn right I do. The key though, in my opinion, is to accept that you have changed, find the things you need (equipment, people, etc.) to make your life as full as you can and live. I hope you make a full recovery but even if you’re like me and continue to have deficits it’s not the end of the world. I still camp but I use a travel trailer instead of a tent. I still go for long “walks” I just use my scooter. I garden and help with the housework, I just take my time and rest whenever I’m tired. I’ve found a social club to join where I can play cards, discuss books, and interact with other people, something I lost when I retired. It’s ok to remember what you’ve lost but you can’t dwell on it and let the losses control you, you need to move forward and decide you will enjoy the days ahead even if they’re different.

I hope this post is as upbeat as I meant it to be. In a nutshell, different doesn’t have to mean worse just…different.


#10

That put a smile on MY face!! Great for you!! I love hearing your story!

I may not always be upbeat, but one thing is for sure, I’m a fighter. I always have been when it comes to other people (My students on the South Side of Chicago, my family, my friends) it is just different fighting for myself. I had to hire a lawyer to get Medicaid rights. Forget social security, I never paid into it as a teacher. I spent all of my retirement (which wasn’t much, but it wasn’t supposed to be used now, lol) on medical bills. Oh well. I guess I just have to let some things go. I know I do, or it will keep me from getting better.

My physical therapy is intense for me at this point, and my new AFOs will be done soon, so I can ditch the walker in time. That will be another big milestone for me, i hate waddling around with this thing. I’m already clumsy, add the walker and I definitely make people nervous, haha.

Well, I actually have to get ready for PT, thanks again, and don’t over do it, Lol!! I worked a few summers ago at a Home Depot as a seasonal manager, and I thought that was tough (I appreciate those who can and do perform hard labor, because it isn’t in me) have a great weekend!


#11

Thank you for your honesty and candor, I appreciate it. I have AFOs myself, I may have to wear them forever, who knows. I just want to go back to teaching in time. I know that will be possible and a bit difficult, but I’ll be glad for that milestone.

I understand that my life has changed forever. I can get past that, except I’m still bitter at how I’m losing my 30s to this disease.

I try to get out: I do ride the scooters at the big box stores so I can get out and run errands with my mom, I can walk with my walker enough to go out to eat, and Im in physical therapy so some things will improve in time. I am thankful everyday I wake up, and now I am thankful i am in my own bed and not in a nursing home’s. I have good days and bad. I just couldn’t take it anymore that day. GBS bested me that day.

Thanks again for your post. It just helps knowing I’m not alone. That’s going to be a big part .of my recovery is knowing I’m not alone and being able to reach out to other GBS survivors.


#12

Love4doxies. I had GBS 36 years ago. I will be 60 this year. I was blest with very little/almost no pain, just no strength. Could not walk or dress or bathe. Never lost breathing. Fully recovered in my mind just felt “slower”. because of other issues I had to see a neurologist 3 years ago and was told I still have mild effects of GBS and my body is no longer able to compensate. I have been SSI disabled for those 3 years. I now experience the fatigue that others mention and have to pace myself. Life is good but not what I thought life at 60 would be.


#13

Thank you for sharing. I feel forgetful or slower sometimes which drives me insane because I am a very cerebral person. How did you cope with having GBS at such a young age? That’s where I’m at right now I’m just very angry that I’m so young and so crippled at this moment. I know I should be thankful because I’m not on a respirator and I am able to walk with the use of a walker for short periods of time, but this isn’t what my life was supposed to be like and sometimes I just can’t let that go. I know I have to because in the end I’ll never get better if I don’t, but it is still frustrating all the same.

Thank you so much again for sharing and please let me know how you dealt with it in your thirties because I really could use some of that kind of advice right now.


#14

Hi Love4doxies!
I’m throwing some rays your way! I’m so thankful for this site where you can share anger and sadness with the toll that GBS takes on you and everyone understands. I believe that you will continue to get stronger. My Neurologist says it’s a 2 to 5 year recovery period and I believe it goes beyond that. So keep at it and don’t give up. Patience was and still is tough for me. Just keep striving to find the positive. That seemed to help me so much. It’s ok to feel a loss because it is a loss. But you are a survivor and bring so much to others!


#15

Thanks for the rays!! They’re helping a lot today bc it is cold and rainy where I’m at! I meditate and am thankful most of the day most days. I just hit bottom sometimes, especially when I feel lonely. I am glad for this forum and even more thankful for the outpouring of responses. Even now I feel better just because I don’t feel alone. People are very curious and sympathetic to it, but when it comes to the nitty gritty I needed survivors.

Even my parents, whom I’m very close to, and unfortunately now live with again, are worn out and don’t want to hear about my struggles or frustrations. They witness how long it takes me to complete a task and they don’t say anything anymore, and I don’t blame them. I’m rambling. Thanks for the rays!! :sunglasses:


#16

My wife and very young son and God. Without Jesus in my life and a church community all over the country praying for me, I would not have made it. Really, I thank God most of all. Doctors were wonderful. Recovery was swift, compared to alot of what I read. Everyone is different. I find it harder now to accept than I did then, but I have “accepted” that I ain’t what I once was. My grandson helps with that. I have great fun with that 2.5 year old and another one due in August.


#17

Hi all, Thanks for posting here and sharing your experiences. It is good to read that I am normal, LOL as far as GBS/CIDP goes. My biggest problem is that My mind has not caught up with the syndrome. I think a good day will lead to a better day and I do more and pay for it the next day. I was at the each beach the other day and played frisbee with my daughter, I didn’t do much the rest of that day and when I woke the next day I felt like I was in a boxing match.
Love, I was also a teacher for 23 years, although had to retire last year because of GBS/CIDP. I taught middle and high school math. What did you teach?

I was surprised to read that you didnt pay any social security, were you a private school I am in the application process for SS benefits right now.


#18

Sorry about that, I hit reply by accident.
I was asking if you were a private school teacher? I would love return to teaching one day. My son teaches at a Christian school and I would love to join him one day. Although my Neuro says its like an incubator and doesnt want me to chance another relapse and permanent damage. I have had two relapses since my original onset in March of 2017. In two weeks it will be a year without a relapse.
Hope all goes well with everyone today. The serenity prayer takes on a new meaning to me now:
God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.


#19

I was a high school French teacher for 10 years in Chicago. It was great, but required A LOT of movement, haha.


#20

Your response was realistic and I thank you for that.