I was a normal 26-year-old mother of 3, in perfect shape and health. Well, maybe I had to lose about 10 more pounds from being pregnant the year before, but besides that I was perfect! Then, in October 2016, I got a common cold. There was nothing extra special about this cold- there was mucus and phlegm and the horrible feeling of just being completely miserable, especially when you can’t take cold medicine because you’re breast-feeding.
Two weeks after my cold I was feeling better. I went out and got a tattoo that week, and also participated in a bowling tournament with my family. Then, one day soon after, I woke up one day and my arms felt so heavy it was hard to lift them up. There was this tingly sensation, like your arms are asleep and you can’t wake them up along with horrible nerve pain down my arms. It lasted all day.
I called my doctor and set up an appointment, and she said I probably threw out a muscle bowling, or that it could be from my tattoo (I got it on my back, so she figured it could be a side effect that would go away). She also tested me for diabetes and it my test came back negative. The next day my legs gave out from underneath me, and I still had the arm pain. Later that night my legs started having the tingling and nerve pain. At that point it was difficult to sleep or walk due to the pain.
Unfortunately my husband has shift work, and while he was away I fell down the stairs. When I dropped a dinner plate and couldn’t get it back up on the shelf, I realized something was terribly wrong. Terrified that I might have meningitis from my tattoo, I asked my husband to come home and take me to the ER. When he came home and woke me up from sleeping, half my face was completely paralyzed and the other half could barely move. Terrified that I’d suffered a stroke, we rushed to the ER.
The ER the doctor tried diagnosing me with Bells Palsy- the only problem with that it does not affect your arms and legs. I argued with him to get a neurological consultation, and in the mean time I slowly became unable to move to lift my arms or my legs until eventually I couldn’t move them at all. I was completely paralyzed from the shoulders down. I couldn’t even twitch my fingers!
I was finally transferred to larger hospital, where a neurologist performed a lumbar puncture and diagnosed me with Guillain-Barré syndrome, also known as GBS. They immediately started me on IVIG treatment which lasts a week in the hospital. At first it didn’t work and I seemed to get worse. I was afraid that I would quit breathing because it can affect your lung muscles. They had a trach tube ready just in case, and fortunately I never quit breathing on my own so they didn’t have to use it. But I couldn’t move anything except for one finger. I couldn’t eat, I couldn’t talk, I couldn’t smile, go to the bathroom… everything that we take for granted ourselves I could not do.
Slowly the treatment started to work, and after seven days I was transferred to a rehab facility for two weeks of inpatient rehab. I had to relearn to walk, talk, gross motor skills, fine motor skills, and perform even simple everyday living activities. I left the rehab facility using a walker. Slowly with occupational and physical therapy I was able to start using a cane and eventually learn to walk by myself, learn every day functions, and with the help of speech therapy I am currently able to talk. The nerve pain never completely goes away. Some days it’s better than others. I had to find a neurologist and a doctor that are willing to work together to help find the best treatment for me because I wanted to do things naturally.
When you get sick, the last thing on your mind is how many physical therapy or occupational therapy treatments your insurance will allow, but unfortunately that is something that patients need to be aware of. I need to think about this a lot because they limit you and then you are on your own to figure out how to live your life. They release you from the hospital with a bunch of pain meds for a month in a wheelchair, barely able to move on your own. It not like you walk out of the hospital 100% recovered- the recovery happens at home too. You need to make sure you have a good support network set up if you plan on a successful recovery, I highly recommend seeing a counselor as well.
Doctors may tell you that you’ll be as normal as you can be after a year, but it can take up to five- so don’t give up hope! A few things they don’t talk to you about is the psychological toll that this disease takes on patients, as well as the constipation and bladder control issues that you can experience (be aware). GBS is very rare and there is no known cure at this time. All you can do is do is what’s best for you- so be your own advocate! Do not be afraid to tell people your story and share. Let’s make people more aware, so that way there will be more studies and hopefully they will find a cure.
The best advice that I can give a person living with GBS is to not give up hope that someday it will get better. There is a light at the end of the tunnel! Celebrate the small victories because eventually all small victories will lead up to one giant victory of successfully overcoming this disease. We are Warriors, and we are Survivors!