The Faces of Guillain Barre 2017: Day 31- Julia

Wednesday, May 31, 2017 0 Comments

I already knew that I was pretty lucky to have my family and friends surrounding me. But after this experience I am even more aware of this.Everything started on my son's first day of school. This little 3 years old guy is so proud to be starting school. That morning, I woke-up with my feet and hands particularly cold, I take my shower and tell myself that I will warm-up.
Minutes go-on and I begin to feel tingling in my calves. In the afternoon, a violent pain begins on my head.

Before GBS

The next morning, I am supposed to bring my son to school and my 22 months old daughter at her nanny.
But it is impossible for me to stay up. I cannot fix my vision on anything and I feel extremely weak. My husband decides to take me to the doctor. Mine being in holidays, the other doctor of the village has no idea of I can have and send me perform a blood test.

The next morning, as I am opening my eyes, I see double. I have no more balance. My feet, hands and my intimate parts are like anesthetized.

We arrive at the hospital emergency, where I am directly taken care of.In the afternoon, after various tests, I am brought in neurology. The two neurologists that came to see me, made me do more tests and then informed me that I have all symptoms of Guillain Barre Syndrome and that they will perform a lumbar puncture in the morning of the next day to confirm. 

I did not understand what was going on, everything seemed to be going so fast. My husband didnt show me that he is worried.

Next day: lumbar puncture. During my breakfast, first wrong way… I have no more the authorization to drink or eat. First tegeline injection, I throw up many times. I begin to speak by the nose and my cough is uneffective.
In the afternoon, I am changed of service, welcome to reanimation!
The staff of this service is admirable, thanks to them (exception to… the little radiologist asshole who says to my nurse that I am not looking friendly… ???... when your face is paralyzed and that you are under artificial breathing, it is just a little bit complex!). 

Anyhow, not difficult to understand that all the connections are extremely painful, mostly when they are trying both wrists, then both thighs. Almost 3 hours of agony, but I am not complaining, I grit my teeth and think of my family.

Friday and Saturday pass and my case complicates even more. The decision is taken, they will put me in artificial coma. My husband is called, he arrives than 1h later I am taking care of. The pain is so intense, that I am seeing this as a relief. I am not thinking of after… For me I will just wake up and go back home.

I stay 10 days in the coma.During this period, I had hallucinations that seems real, even today 16 months later they still felt real (if I begin to tale those hallucinations, you will think I am crazy!).

Awakening was very difficult, my husband told me that they had to send me back to sleep once before performing a second attempt with pills. I was very jittery, they had to attach my wrists to the bed for 2 days. When I think about it, I am still having this powerlessness feeling. I fought as hard as I could, My wrists kept bruises for at least two weeks. My wrists are finally unattached, but with pills I am raving and still this impression that I will go right back home… I tore off my gastric tube and my urinary catheter 3 times. I am being attached once again.

During the night, I had a high fever, I remember the cold glove on my head.
In the morning, I am still convinced that my husband is coming to take me home. Then, I realize that I am connected to a machine, that I cannot talk due to the tracheotomy. They give me a board and a felt pen, I can finally communicate. I have an amazing physiotherapist at the hospital, he motivates me, makes me move my limbs, makes me perform physiotherapy breathing due to the pneumonia that I had during my intubation.

I am learning to breathe again without the machine in a few days. Then they unplugged me and I could finally talk. But I realize that my face is completely paralyzed.
My husband, this extraordinary man, comes every evenings during visit time. He talks to me while taking my hand, passing wipes on my face, massaging my shoulders, then goes back in his car an cry without anyone knowing.

After three weeks in reanimation, I spent a week in neurology. The first time I saw myself in a mirror, I was scared, and for a moment, I was telling myself “and if I stay like this, what am going to do ?”.
I have Miller Fisher syndrome, my face is paralyzed.
I decided to fight not to stay like this.
Neurology also means reunions with my little treasures. I missed them so much. They were my strength, during those long solitude moments. I can successfully stand up on my own, I can go to the bathroom and I can have a shower alone ! After a second tegeline treatment, I am authorized to go back home with physiotherapy 5 times a week and speech therapy 2 times a week.

My amazing colleagues allowed me to have 7 additional weeks at home after my recovery as they gave me there holidays. I went back to work in March 2016 in therapeutic part-time until August then I decided to change my work time to 20 hours a week to keep more time for my family.

I am still tired faster than before, my body has issue to handle a full day without a nap, I cannot feel part of my left forehead  and I have headaches almost every days. But otherwise, my recovery is complete. I will never be the same person from before this September the 3rd, but I am this person that knows that life can flip around in the blink of an eye. And I know that this experience has made me a better person.”