Reply To: ANYONE EXPERIENCING GBS (patient or caregiver)
1. At my lowest point, I was almost completely confined to the couch since my bedroom was upstairs. I had to have someone hold onto me while I walked to the bathroom. I had so much numbness in my legs that I don’t even know how I could move them. I also had double vision which made it difficult to see clearly. It would take me half a day to rest up for someone to help pull me up the stairs to my shower and I could barely stand upright. If I was able to get shampoo in my hair, I had to take a break and rest on the bed for about 10 minutes (water running the whole time) before I could make it back to rinse the shampoo out. I could not brush, dry or fix my hair. I just pulled on something easy (running shorts & t-shirt) because my hands were not working well. It was a while before I could put on makeup or even cared to (much bigger concerns). I had difficulty eating because I had trouble even sitting up to eat.
2. My neighbor loaned me her mother’s cane but I really needed a walker because both legs were affected. I ended up not using it because I just kept fighting to walk with other’s help in my house. I didn’t get out. Just trips to the ER and other Dr and PT appointments.
3. I had trouble chewing and swallowing. My jaws would get so tired. I started drinking Boost because I couldn’t chew and lost more than 15 pounds.
4. I was out of commission. My kids had to help me.
5. I could not drive because of the double vision and I could barely walk. When I finally could drive again it was so hard to keep the clutch in and my hands would get tired holding the wheel.
6. I didn’t plan anything. In too much pain.
7. I didn’t shop for months.
8. I did find a way to wash laundry eventually but I didn’t fold anything.
9. I am lucky I had a spouse taking care of all of that. (Took 2 years to pay off my bills but done!)
10. I never slept. Completely sleep deprived. So many nerves firing and so much numbness and pain.
11. Laid around all day long except for couple of laps I tried to make around the dining room table and shower then I was done for the day. So exhausted and in pain.
13. Had to go out on FMLA leave because of double vision and inability to stand.
14. Could not type on computer or see to do job. Eventually had awesome PT and able to work again.
15. Never had devices. But did use a yoga ball and walked in a pool to strengthen my core again and putty to regain my finger strength.
16. I didn’t participate in anything for months. Could not even see the tv clearly.
17. I do notice that my endurance is lower but I am lucky to be able to run and work out again. Races take a toll now and I can do a 5k at a slower pace (I ran marathons before). My grip strength has never been the same since.
18. I had great friend and family support. Terrible medical support at the time. But great doctors eventually.
19. I lost my speech at my lowest point and only my closest friends and family were around for that. I was so closed off except I found this site and it was the help I needed so desperately.
20. I dropped off from social media at that time because I felt I was fighting for my life and I didn’t know what was happening to me. I thought I was going to die. I had my family with me, my mom stayed nights and days with me, and a couple of close friends called and visited. I fought through the blurred vision to find this site and got to meet others with similar problems as me. It was the greatest! I still keep up because no one should be alone with this.
I hope this helps. I had a milder case but it didn’t seem so mild to me at the time. I am over 2 & 1/2 years out and am basically recovered. I am glad that you are getting awareness out there on GBS. I was lucky to get therapy early on and I think it made a huge difference in my recovery. Good luck to you in your studies and career!