MyRiie

I suddenly became very ill in June 2018.

I'm not sure how all of this started.. But I was hospitalized on a Monday and 2 days before (on Saturday) I just had a normal work day, no weird things going on, just a regular work day.

On that Sunday I was spending time with my boyfriend at his place.

That Sunday I woke up, and I had a really strange feeling, something was not right.

I got a tingly feeling in my hands and a little bit in my arms. I didn't think it was bad and that maybe I've layed on my arms in my sleep or something. I assumed the feeling would go away eventually, but it didn't. I also noticed that my vision was not normal. Maybe this sounds stupid, but I would describe it as a video with "freezing frames".

I called a doctor's post and told him about my complaints. He was very confused because the tingly feeling was in both hands/arms. Normally (with heart complaints) it's just one side. Eventually he gave me advice: If the complaints were getting worse I had to call him straight away. Things didn't really change that day. My boyfriend brought me home later that day and we spend the night there.

The next day I woke up,.. I was in total panic.. The tingly feeling was so much worse, now I felt it in my arms and in my legs. I tried to go downstairs but I couldn't walk normal, it looked like I was druk or something.

I couldn't controll it, it was terrifying. I also had sudden double vision, that was also scary.. My mom brought me to our general practitioner. She had no words, she didn't know what it could be. She did some small tests, but she didn't trust it; my reflexes didn't work. She made an appointment for me in the hospital right away.

I went to the hospital with my mom and my boyfriend later that day. The neurologist also tested my reflexes in the hospital, and she didn't know what she was seeing. Again, the reflexes didn't work. What could it be? She was thinking that maybe it was Lyme disease,

or maybe a tumor inside my head..

She told me that I had to stay in the hospital so that they could do some research.

I was very scared.. because we still didn't know what it was. I had an RMI scan right away and they took some blood for research.

The most scary thing: they also did an epidural. Luckily I didn't feel much, but I was emotionally exhausted. In the evening they told my mom and my boyfriend that they were thinking it was probably "Miller Fisher Syndrome". They decided to do nothing at first and closely monitor me.

The next day it was way worse..

Things got really bad quickly.. suddenly I couldn't walk anymore or speak normally, I had an extreme double vision and I had tingling arms and legs. I felt so weak.. even breathing felt like it was too much. I was really afraid.. I thougt I was going to die..

The hospital confirmed it was Miller Fisher Syndrome and Guillain Barre Syndrome.

I had to stay for at least 8 days in the hospital.

They gave me intravenous immunoglobulin or plasmapheresis (a procedure in which antibodies are removed from the blood) and supportive care.

After those 8 days in the hospital I was "strong enough" to leave the hospital for recovery at home.

Right now I'm doing well, but I am still recovering.

It takes a lot of time and practice and I often lose my patience. I can walk again, but not really long distances and my vision is normal again. I am still fighting against fatique and I still have problems with accepting all of this.

Luckily I get help from a Psychologist.

For a while I couldn't paint or draw (I didn't have control in my hand movements) but that's all better now. The only problem is, sometimes I don't feel like making art anymore or I just feel too tired. I hope that it will all get better in time.

I'm not sure where the future will bring me, but right now I want to focus on my health (physically and mentally) and finding the right ballance.