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Living with Polyneuropathy CIDP, GBS, & CMT

GBS and retirement

It’s been over 6 years since I came down with GBS. I did not fully recover from my bout with GBS. Legs, especially the knees are still weak. Same with my arms and grip. My core muscles are also weak. I have a hard time do 1 sit up. I can walk and do a lot of things but my day always start with my tank half empty. I’m going to be 63 in November. My plan is to retire next year after I make 64. My reason is simple. Everyday after work, I am so fatigue, all I want to do is lie in bed. I want to do things and make plans to do things, but I can’t find myself in doing them. I kinda feel guilty retiring early and feel I’m not pulling my weight. Am I alone or are there others former GBS patients out there that had to retire early too?

I had to retire at 52, although I have CIDP. Fatigue is real and hard to Deal with. I felt the same way you did about retirement. I felt guilty not going to work every day until a friend, who received a kidney transplant and was forced to retire, gave me the best advice. He told me to embrace the retirement and that’s what I have done. I do things that I enjoy and am now, after 2.5 years, looking to find some retired friends to hang with. Don’t isolate yourself, do all you can to enjoy life and the ppl around you.

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Hi,
I had GBS 5 years ago and was completely paralyzed, though after I was given plasma exchange treatment I started to get movement back.
In my recovery I started slowly walking every day and since then I found walking really has helped getting my felling back and also with the fatigue.
I since then started a degree and are about to finish My BA in children’s studies, no retirement for me.
But walking really does help, even 5 min, a couple times a day, eventually it will change.
Keep going

I can identify with all that you are saying. I’m only 36years old and I had GBS in 2015. The fatigue and periods of weakness that I still deal with is very real. I haven’t been back to work. I feel so extremely guilty. I feel bored and I feel unproductive at times. After I do a certain amount of daily activities I’m so tired until I can’t do anything else. I have been taking b12 prescribed by the doctor and it does help. But I just sometimes feel the same. Some days are better than others. But overall I’m just tired all the time.
Please do not feel guilty for retiring early. You deserve it. And what you have to realize is that GBS is traumatizing on your body. People who have not been there will never understand. They think it’s psychological and ITS NOT. If you can retire at 64, do it and be happy. I’m praying for you that your strength will increase. Blessings.

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Spencer,I have had cidp for 7 years.I worked for the first 2 years, but I found that I couldn’t do it anymore the fatigue was to much.(I was a truck driver for 25 years) I applied for and recieved social security disability but I still feel guilty about not working sometimes but I worked for 42 years so I figure I have paid my dues.My wife,and family keep me pretty busy and that helps.So try to stay as active as you can l know it’s not easy good luck

I understand your frustrations. This November will be 5 years since I had to file for social security disability. I was 60 when I came down with GBS. One day I was walking and the next day I couldn’t turn over in bed. It would be two years before I would walk again. I couldn’t work at all. I lost my job, had to sell my home and move from one side of the US to the other.
I now live in a senior building and changed my whole life. The fatigue was the hardest and I am doing well. I can walk and I even travel with a wheelchair as it is too hard otherwise.
Embrace your retirement. Look around and count each and every milestone as a blessing. You earned it. God bless you.

Spencer, there are so many people in this world who couldn’t care less about being a productive human being. So many people are willing to live off the efforts of others. You, and so many others who have responded, have been through so much and continued to try to maintain your routines and lives. Retire - and find some way to enjoy it. My husband has CIDP and cannot work. He is 57 and cannot move either wrist or any of his fingers. Anyone going through either of these horrible diseases deserves to put themselves first. Take care, and enjoy your retirement. If you feel the need to contribute in some way, find somewhere to volunteer when you are able.