I can really relate to Jan as most of us can. People look at you and think you’re perfectly healthy, but as she said those closest to us know. Some days I get so tired that my eyeballs feel like they are going to suck back into my head. I had full course of GBS in 2001 and was vented.As the years have gone by, I seem to get worse than better. No energy, after about an hour until I rest awhile, numb feet when walking, and tingling of nerves in my legs is mostly constant some times it feels like something is crawling in my face and my legs in particular. Particularly after stress. Others don’t seem to understand how emotional stress and other things as you said, weather can bring you down so quick. I was talking with a nurse the other day and telling her about my experiences with GBS and she had nursed Gbs patients before. She said that there are 10% of GBS patients that never recover. I said I had not fully recovered because of all the recurrent symptoms. She said “I mean those that are still vented”. She had a patient 12 years old that is now 16 and still vented. I felt blessed to have the symptoms I complain about daily and started counting my blessing of how much I can do, walk a little, swim a little, enjoy my family if not too much work involved, and do life on a limited amount of energy vs. this 16 year old child who has been like this for 4 years. My prayers are with her.

Thanks for the article. It is extremely difficult to define each patient’s recovery and experience. I still have a lot of pain and fatigue as my residual problem. Some days I feel almost human and can do lots of things; others are just too much for me. Exercise, emotions and the weather seem to be important factors that influence my well being.

We are often defined as having “chronic fatigue syndrome” because it is much too difficult to explain to others what we are feeling. I look very “robust” and healthy if anyone were to look at me, but once I start walking or stumbling and dragging my feet, people notice that I have a problem. I consider it my “job” to deal with these issues by spending my time trying to maintain a balanced life. When I get tired, I am way too sensitive and people seem to attack me more. Maybe they notice how vulnerable I am when I can barely move…who knows?