It gets me so upset when doctors say "You look fine...you're cured"...I am positive and I think positive all the time but when you're in pain, you don't think straight. I would cry on my way to work and wipe my tears before walking in.
I have an amazing friend who was and has been such a great person in my life. The only reason she knew that I wasn't well was because before this GBS I was able to go to the movie theatre and after GBS I was not able to do that anymore.
I was so young and I just lived with the pain not knowing it was the residual affect of this syndrome. I was 17 at the time...I had no idea about medicine or what it was I needed to not be so tired. I was even put into counseling because they thought something was wrong with me...I kept telling them I felt this sensation and I needed it to go away. At one point, I thought everyone felt this way and that maybe I was crazy.
One day I met this woman in a baseball field...both our kids were on opposing teams. She would see me take my son and then I would sit and get up...sit and get up...then I would leave and tell someone else to pick up my son. One day, she came up to me and said "I hope you don't mind but I have been seeing you a lot here but you are always moving around and sitting" she then told me she was a nurse and she can't help but notice things like this. Now..keep in mind I never talk about what happened to me at a young age because I can't help but cry...so nobody knows this part of my life and what happened to me because I didn't want people to know. She then insisted on coming over and even said it was so our kids could get close. I didn't want to bring someone else into my life because I have limitations on things I can do and lying to another person about how I was feeling that day seemed like too much work. Anyway, she came by and kept asking me what was wrong and to my great surprise, I opened up about how my body is always burning and I have good days and bad days and how my balance is off and have been hospitalized for not paying attention to what was in front of me and I fell so many times and I just kept talking...I told her everything! She then asked me if I had suffered something traumatic in my life and my answer was no. The reason I said no was because every doctor including my parents kept saying it was in my head. Then I said..I did have GBS when I was young but i'm fine now...this is something different..I just feel burning and chronic fatigue. She told me that what I went through was residual of why my body feels this way. I told her that I was tired of being judged by people and I was just going to live like this. Since she was a nurse, she had connections in the hospitals and talked to a few neurologists. I kept telling her that I wasn't going to go because I hated hospitals and how they treated me because of what I looked like which was that i looked fine on the outside. I am going to fast forward because I can write a book and I am a writer (but please don't judge my ramble because I'm not being published lol).
I met with one of the best neurologists (so they say) and he had some nerve test administered on me. The person who administered the test told me how the needle was on full speed and it shows like I was never paralyzed! I walked out and closed down again...if it shows like I was never paralyzed...why am I complaining? I felt the guilt of knowing that some people never got to walk again and I shut down again.
I graduated college which took me like 10 years lol but I was determined to do it (i'm 28 at this point). My confidence was at an all time high and I was now determined to look for answers as to why I live with chronic pain and fatigue (I looked at these neurologists as my equals because we were both educated now. I'm no longer the shy person who was going to walk away. I wanted answers! Why am I living like this? I can't even hold a job! My quality of life could be a 10 and it was a struggling 3! I wanted a copy of my nerve testing and found out that the reason the needle was going crazy was because I had damage to my nerves...the coating was gone. This man was suppose to be a top neurologist?
I finally found a doctor who heard me...and you know why? Because I was having a real bad nerve day and hadn't slept and my eyes were bloodshot and I basically collapsed in front of her. We started on medication and I tried everything you could imagine and I would bring the bottle of medications in and set them on her table because I didn't like the way they made me feel...fast forward to 40 years old and I have tried every medication. She understands me and listens to me. My point is, keep looking for doctors, you will come across one who will listen. I was so frustrated and was in so much pain and one time I yelled and said would you listen to me if I had stayed paralyzed because sometimes I feel like I am with all this.
I have come to a point where I am opening up. I am 40 years old and I feel like I want to stand up for people because I don't want them to go through life in pain. We are given one life and we are going to spend it lying on the couch with chronic pain? NO! I'm done with these doctors telling me what I should feel. And my friends too btw, they have come to understand what i mean by good day and bad day. I call myself on this board "NeverPlan" because I really never plan...I don't know if January 15 or 16 or whatever is going to be a good day where i'm going to plan something. I don't plan anything because I'm not going to disappoint or be upset about it.
I wrote so much ooops but I hope my story helps one person at least or the fact that I express myself now after all these years.
It's so sad. What we could do before. I was so active, the hours I put in working out. I wonder sometimes think why ME. But then I also think about everybody else with the funk GBS. WHY.
I fear a relapse more then the funk GBS. I tired a sauna loved it too, wonder why I was wiped out. Iam not any meds. Can't find a doctor to help me. I went to a new one he walked in said I was cured of GBS. Told him the weakness the pain, all the things I could do before. He says you walked in here you are cured wow. It's sad that we have to deal with GBS and how it has changed your life's. But when you look for help you get it's cured it's in your head in time it will be better. Your life's will never be the same :)