3 years post covid with Guillian Barre syndrome.
Hi. I’m desperate. I hate my life ever since I got severe Covid in 2023. I developed Guillian Barre syndrome and it comes back every time I get a virus. I’ve been hospitalized many times and get IVIG treatments for 5 straight days. I am so weak. I can barely walk up three stairs, my arms are too heavy. I pass out. I can’t regulate my body temperature and pass out and puke in the heat. I can’t stand or walk for more than about 45 minutes- enough to hold onto a cart and go for groceries. I swallowed my pride and got a handicap parking pass. I use a cane or walker if I don’t have anything to hold onto. I used to work 12 hour days in the Operating Room and Central Sterile. I miss my job greatly. I was a youth group leader, very active in church and volunteered a great deal. I miss my life. I have tried to stay positive and I do realize that I am very blessed compared to many. Every time I want to give myself a pity party I literally count my blessings. But I’m being human and real here. I’m sooooo tired. If anyone has ANY ideas or a provider who says more than “It’s a time issue “ please let me know. I am just done.
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That sounds horrible. I did not get the vaccine. I have multiple autoimmune diseases and my drs felt it might be better to combat the virus that they knew more about than the untested vaccine that had no studies on what it would do to someone like me who has had reactions to meds and vaccines in the past. They suggested if I INSISTED on one, I should probably go with the J&J one because the main side effect was blood clots and I am on two blood thinners. I said no thank you. I avoided the virus until 2022 when my daughter flew home from Alaska and had a slight cold which is typical for her. It was Covid and by the end of the week I was trying not to die and my whole life changed. Since I developed Gillian Barre I am not really eligible for ANY live vaccines ever. Not shingles, not the flu, not Covid. I do my best to just stay healthy and let me tell you it’s a chore at times. I’m flying to a conference next Wednesday and will mask in flight and most of the trip which will drive me crazy but it’s the difference between life and tempting death. Thanks for responding!