Remembering My Guillain-barre

My name is Angela. In 2005, just 8 days after my 21st birthday, I started feeling funky. My nose was kinda numb and tingly, my legs a bit week and I had a big pain in my neck... I of course didnt think much of it right then because I was drunk. At work the next day, I picked up a pencil and noticed I was having a little trouble griping it and that it was making my hand writing messy; well that reminded me of my symptoms from the night before so I called my boss and told her I was going to the hospital. I drove myself to the emergency room and after telling them of my symptoms they told me my blood sugar was low and gave me some juice and crackers and sent me on my happy way(happy because I had the rest of the day off work and had the next 2 days off anyways.) Little did I know of what was coming to me. The next morning when I woke up, I was having a hard time getting  out of bed. My legs just did not want to hold me up. Now Im not big on hospitals, but I do at least know when I need to get myself to one. So my sister took me to the hospital once again and this time they sent me home after telling me I was getting the flu. I was upset because I felt that they were wrong to send me home, but really... who in the end gets to make that decision, right. One way or the other, I blame them for the embarassment I went through the next morning. This time when I woke up, my legs refused to hold me up or even act like they were the limbs that I control... I had to literally roll off my bed and proceed to crawl to the restroom; which is where my sisters eventually found me sitting on the floor crying that I didnt want to go back to the hospital. Alas, I was dragged to the car anyway(and I do mean dragged) and though we went to a different hospital at first, we ended up at the same one I had been to twice in as many days. Luckily, this time, the third time was a charm. After watching me walk(wobble and fall) they still had it in their minds to send me home and would have except that I was hyperventilating and couldnt stop and they said they couldnt let me go until I stopped. I guess something during that time I gasping for air convinced them I should be admitted. I believe it was that day my world started to tilt and I was hanging on for dear life. Each day it got worse. I had trouble breathing, I couldnt eat, I was nearly completely paralized, I lost my voice... and they were punishing me for it(at least thats how I felt). They didnt know what was wrong with me, but they were convinced it was my own doing. They even said if I didnt eat and start  at least trying to get the mucus out of my own throat that there was nothing they could do for me and would have to send me to a nursing home. They told me I most likely had a conversion disorder and the only way to get better was to LET myself be better... WHAT? They were trying to scare me into a confession of what I did wrong Im sure (damn doctors watched a lot of House I bet) Problem was, Id done nothing wrong. Either way, my nurse would move the mucus sucker out of my hand(which was mean because my hands were the only things over which I had the tiniest bit of control and I could barely move my arms to get the sucker where I needed it to keep my throat clear and NOT choke) she said I needed to keep my hands moving. Like I had any control over what was becoming paralized. I remember I was lying in bed one night, completely paralized now, and I  was having extreme difficulty breathing. Luckily I managed to convey this fact to my mom who got a nurse, who came back an hour later with some oxygen... and I still had trouble breathing. Again I told my mom and someone cam einto the room with some kind of machine. The nurse explained that the machine would go down my throat and suck all the mucus and blockage out to help me breathe. Maybe  it would have worked for someone else, but it nearly killed me; I dont recommend this machine. My heart nearly beat out of my chest, which the nurse said was normal, shot me with morphine and told me to get some rest... 15 minutes later I looked into my moms face and knew I was dying. I could not breathe at all and everything was going black. Code Blue. I woke up to the worst pain I have ever felt shooting through my arms and legs and told not to talk and not try try because I was intibated.  The next few weeks were a blurr. A friend of a friend of my moms mentioned Guillain-Barre and a light went on in the doctors heads. At least it wasnt something I had done anymore. I was taken to a different hospital, given my own room and moved right it... including a blow up bed on the floor for a member of my family(my family was amazing and stayed with me every single night for 3 months straight, I did not have to go through this alone at all). Like I said most of the rest of this is a blurr. I was on a lot of meds. I remember pain and tears and peoples faces fading in and out. I remember getting a tracheotomy (it was the 2nd one they gave me that I remeber the best because they put a bigger one in there and didnt cut the hole bigger, they just jammed it in there and I wasnt all the way numb OR put under... talk about pain) and with the 2nd one I could talk, which was an amazing feeling after 2 months of not having a voice. Once they moved me to the rehab floor I think I got pretty angry. I hated everyone because I felt like they  hated me and no one understood what I was going through and they all needed to be nicer to me; that was my attitude and I admit it. I was awful, but I was in a lot of pain and not just physical. When youre paralized there are things you cant do... like use the bathroom... dress yourself, shower, brush ur hair, give someone a  hug... the list goes on and on and they are all things that would many people in a bad mood. Therapy was hard, I wont lie and it was even harder to learn to trust my therapists. Trust they wouldnt let me fall, trust that they wouldnt drop me... trust. I started getting feelings and movement back in my arms and most my upper body a little after 2 months so i did a lot of occupational therapy. They had to prepare me incase I never got out of the wheelchair. Physical therapy was tougher for me because I still couldnt feel my legs and I was so scared to do the things they wanted me to do. I learned to use a transfer board... I was extremely resistant to that but once I learned it was as close to freedom as I could get at the time. The day my toe moved a fraction of an inch I was excited... the day I stood again on my own was amazing and 2 weeks later I left that hospital with a walker. I was in bed for 3 months exactly and it was the worst experience of my life, but I am a survivor of Guillain-Barre. Now, 5 years later, I still have pain, but I can walk. Im weaker than I once was, but I can brush my hair. I can hug my loved ones. Im still here. I know there are people out there who are wanting to know exactly what to expect when you have guillain-barre and Im betting the experience is a bit different for everyone, but my sisters made a blog during the 3 months that I was in the hospital. It explains things a little better than I can since I was pretty out of it. If youd like to read about my experience from their P.O.V. you can @  thanks for reading- Angela

SmilinEyes SmilinEyes
22-25, F
3 Responses Feb 23, 2010

May the Lord continue to be with you. Although you had it much worse than I did, I know what it's like to be sooo grateful to be able to do things on your own!!

I had Guillian Barre in 1989. I was about 45 at the time. I too was paralyzed. I know they say GB develops after a cold or surgery. Well, I did have a cold - and I also had some surgical tooth work done. However, I also went through a divorce about that time. I think my immune system was down because of the stress I had in my life. I am sure the cold and tooth surgery contributed - but I also feel the fact that I had terrible stress in my life contributed to it also. Thankfully, I came out of it 100% and have no symptoms. I am not a very strong person physically. I just feel that is age - and not the GB. I am 65 and still working full time as a teacher. Praise the Lord that I recovered completely. Life it again good.

Never give up. Recovery can continue for years, and everyone is different. Take good care of your body and be positive!!! Check my blog for our Guillaine-Barre stories, pics, info, etc. Go to Choose the category Guillain-Barre Syndrome/hospitals. Scroll down (back) to the first entries. I believe the very first one is "Living in Hospitals, Part I". More recent stories in other categories mention how the GBS survivor is recovering now, although they are not linked to that category. Every GBS survivor is different. This is just one example. Life is good!