Living with Guillain-Barre Syndrome

It all started in the month of November 2006 about a week after thanksgiving. I am the kind of person that works and works and doesn’t really rest especially during the holidays around this time I was switching jobs so my insurance was going in COBRA which of course as most know costs and arm and a leg. Because of all the work I was doing I got sick with the flu but that didn’t stop me from working.

While I was at my new job I started to get double vision and about a week after that everything started getting blurry and my tongue turned to the this bright red color. Well because of all of those symptoms I had to stop working and had to go see a doctor but during my lab work I got really light headed and passed out and ended up getting admitted to the hospital, when I got my results all the said was my vitamin and potassium levels were extremely low and I had to stay for 24 hours till it went back to a normal level.

During that time period my eyes did clear up but my legs started to swell and I started to get this weird feeling in my feet and legs but all the doctors and nurses said was that it was normal when you get IV’s with fluid put in your body. So I went home and had a few days off before I was going to go back to work.

Well it didn’t really take long because 2 days after returning home the pain in my legs started to get unbearable and they looked like puffy marshmallow feet and it got to the point where I couldn’t get out of bed or even walk around without someone helping me, I called my doctor and went in and all she said was its just excess fluid and it will go away with time. So because of the fact that I needed help getting around I couldn’t work anymore till I could do things on my own. Well as the week progressed I ended up having really bad balance issues and I was losing more feeling in my legs day by day and having these just painful shocks shoot through me. I had to go see an Ear Nose and Throat specialist to see if I had some inner ear problem causing my balance issues, and of course nothing was wrong.

Well as I got to the end of the two week mark things got to the point where I was having to be taken around in a wheelchair and my parents had to help me do everything, as I was sitting in my room one morning I woke up and was just laying in bed and decided I would just draw till my parents came home from work and when I went to pick up the pencil I couldn’t grip it and I tried to go and pick up something else and I still couldn’t get a good handle on it.

I called my mom immediately that was a task of its own thank you for voice dialing on cell phones. She came home and got me in the car and we heading to the doctors, when we got there she did a few tests and saw I had numbness and weakness in my legs and hands and quickly admitted me to the hospital and started the painful and long drawn out tests. I had 4 Lombard punchers done, blood tests and an EMG/NVC. When the results came back and all pointed to me having a very sever case of Guillain-Barre syndrome, this of course scared me to death because I was told if they didn’t catch it when they did I could have ended up on a respirator and maybe even died.

Well I was stuck in the hospital for 2 months and during this time had the most horrific experiences in my life especially when I was sent to the rehab center where I was suppose to have physical therapy to help me learn to walk again but most of the time in there I was bed bound and just stared at the walls.

During this time in my life I went into the deepest depression that I wouldn’t wish upon anyone. I wanted my life to just go away and felt like nothing was going to get better, I wasn’t improving and things just felt like they were getting worse again. I mean the pain was so unbearable and the medication only dulled it out for short periods of time, I tried distractions but nothing worked all I wanted to do was curl up into a ball and die, I felt like that was the only solution to getting rid of the pain. I mean it was nice for the few people who actually came to see me and also I found who my true friends were too. I thank god that my gallbladder decided to have gallstones because I think if it didn’t I would have been stuck in that hell hole that they call a rehab center for a longer period of time.

About a week after my gallbladder surgery they aloud me to go home though I was still using a wheelchair to get around and though I was home I still felt very much alone and felt as if things were never going to get better. Since I needed to learn to walk again if I ever wanted to get back to my life I started to go to an outpatient Physical Therapy office that specialized in GBS.

I saw things slowly get better I felt like I had found my angel who was going to make things more brighter, I went 4 times a week and pushed my self through the pain. I went from a wheelchair to learning to use a walker and I also wore leg braces to help me not lock up my knees when I was trying to walk. I had a foot drop in my right foot which made it harder but I pushed through it and as weeks and months passed I learned how to take steps, and this just started to remind me of my childhood of learning how to walk.

As I got stronger I slowly transitioned to using a cane and learned out to walk up and down stairs and other more difficult things too. Since the middle of 2007 I don’t rely on my cane much anymore. I do use it from time to time when I feel weak and start having difficulty doing things.

I am happy with where I am in my life right now and proud that I was able to get back to somewhat normality in my life. I am and always will have to be very careful when I get sick because I can relapse and go back to they way it was at the beginning, I do still have numbness and weakness in my legs and have lost my reflexes, and from my neurologist I have been told I might never fully recover but being where I am today just shows that good things can happen.

I think what I have learned most from everything I went through is that even at that point in life where you feel like nothing will ever be the same, if you push yourself and try to think about the future that you can have that will make you a stronger person. Now in 2008 I am happier then I was and sharing this story makes me think that I can help someone else who hasn’t reached that point in there life yet.

I would never wish what happened to me on anyone else and though there is no cure for GBS and it will always be there haunting me day by day. Remember just one thing if you break through that point in life where you feel like nothing, there is a light at the end and sometimes it is the only thing that will keep you going in life.