Living With Gbs
Three years ago I had GBS. I had been feeling progressively weak all summer. I had alot of trouble getting up and down to garden. I had dizzy spells and generally felt unwell. I have had migraines for most of my life on a regular basis. In August I had one that was excrutiating. I was vomitting more than usual and had trouble swallowing. It wouldn't go away.
I began to fall when walking, especially when changing levels. Stairs were impossible without help. My legs just wouldn't respond sometimes. I went to my family Doctor twice and was told it was stress and I should meditate. As it progressed, I couldn't get out of a chair and eating was so difficult that all I could eat were instant breakfasts.
At this point my husband, who was really scared by this time, took me to the emergency ward of our local hospital. When my eyes kept rolling into the back of my head, the emergency doctor told me to "Quit it". By this time I was in a wheelchair and could do very little. I had a Catscan. The Doctor told me I wasn't having a stroke and sent me home saying I needed to see a neurologist. Of course it was a weekend. Monday, my oldest daughter repeatedly called the neurologist until they finally said he would see me if I could get there in 15 minutes. He took one look at me, said it was GBS. He called the hospital asking "since when do we send people home that are this sick". Unfortunately he doesn't have hospital privileges and the other Neurologist was out sick. One of the hospital's doctors got the job of keeping me alive until I could get a bed in one of the larger hospitals where they could treat me.
I was paralysed all the way up by this point. For a week I was in the observation area of the emergency department. I could no longer eat so I had a feeding tube. My eyes couldn't close, and my speech was pretty well gone, though my daughters and my husband did fairly well figuring out what I needed. I remember the Doctors and Nurses arguing whether or not I could give consent. I wanted to throw something at them at this point. I was in there, totally aware of everything going on, I just couldn't tell them (every medical practitioner should see the movie "the Diving Bell and the Butterfly).
I was moved to the stroke area for a few days, then transferred to the city hospital. I was in there for a week, getting a multitude of tests. I was constantly vomiting which was really scary because I had no control of my neck or head which made the MRI a nightmare. My husband sat there rubbing my feet while I had an MRI that lasted over an hour. After a week, and a command performance with 30 neurologists and residents I received IVG treatment for another week. After that they sent me home to my local hospital. I began getting stronger, being able to sit up, then using a wheelchair and eventually a walker. I was then sent to the local rehab hospital for physical, speech and occupational therapy. Unfortunately I still had the feeding tube, since I had ( and still have ) great difficulty swallowing. I was still losing weight . Finally they took the tube out and I could go home.
Home was difficult. It was the middle of winter. I had a few visits from therapists, and went to physio twice a week for about 6 months.
It's been three years and I am still having problems. I have tremors and spasms alot of the time. The spasms are like having a bad charleyhorse but in my arms, chest, back, legs, hands and feet. My fine motor skills are spotty at best. I tire really easily. I still have swallowing problems and can't eat fresh fruits and veggies. I used to be a singer, but now I find it hard. My voice has not come back to it's old level. My speech is often slurred. I have alot of problems with balance. I walk with a cane unless I'm at home where there are things to hang on to. I'm still hoping for more improvement and work hard at finding ways to do things that I love to do. I try to focus on what I can do, and I'm grateful that I have come back as far as I have. My relationships with my daughters and my husband are even stronger than they were , though there have been changes in all our roles. GBS had and continues to have a profound affect on my life and that of my family. I am grateful for every day that I have, but I do worry about the future. It's hard not too.