We've got another fight again
For a moment it was very quiet. We held each other so tightly, No words for a moment, just two souls in silence.
A day after my boyfriend's second heart surgery, I was diagnosed with MS.
Multiple sclerosis (MS) is a potentially disabling disease of the brain and spinal cord (central nervous system). In MS, the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body. Eventually, the disease can cause permanent damage or deterioration of the nerves.
It was summer 2017 and I only went to the neurologist for the results, not knowing that I would get a diagnosis. I had been in the mill for 3 years and was used to being sent home again.
My first conversation with the neurologist was not pleasant at all. Because I had been in research for 3 years, he immediately threw it on the psychic side.
He said that I had to drink alcohol for my trembling legs and think about a clinic for psychological treatment. I could no longer find the words, it made me silent, it touched my soul and it also made me doubt very much, is it really between my ears? As I started to think about it, I kept believing in myself. After all, in three years nothing has been done more than a simple blood test. The neurologist did not ask which specialists I saw and what kind of research I had during the conversation. He only judged because he heard that I had been under research for 3 years.
I was half an hour early, the neurologist saw me and called me right away. I thought it was strange, the waiting room was full and asked if he had made a mistake because I was too early.
“These people can wait a while,” he said. It gave me a gut feeling and my heart raced.
Just as he immediately told me last time that I should have a drink and think about a clinic, he was so direct with his statement of the research. “I have bad news.” He looked at me intently. “I did not expect it, but you have Multiple Sclerosis, it is obvious.”
I went silent for a moment, all I thought about was, oh my gosh. I have a heart patient to care for at home. I just lost my job, how can I get back on track as soon as possible because my boyfriend can't work anymore.
He saw that I was dreaming away and asked what was wrong. I told him that my partner had an angioplasty for the second time yesterday.
He looked at me, I'm sorry I wasn't so kind last time and that I judged you without listening to you. Your MRI shows a lot of damage, we can see that you've been running with it for a while and that it's now active.
I assumed that you had a lot of tests in the three years, but looking back I only see blood tests. I looked at him, accepted his apology, and told him to fix me up quickly because I have a heart patient to care for at home.
My boyfriend was still sleeping well, recovering from the angioplasty. On the way home I was in doubt, what should I do, he just had surgery for the second time on his heart and then you have to tell him that you have MS.
Thinking back on what we've all been through, we shared many joys but also infertility, myocardial infarction, two angioplasty operations, and now MS.
Two young people in their 30s should have careers, a family, not this! What a rollercoaster.
I can still hear his cardiologist say in the back of my mind, “it is the way it is”, I grabbed my mobile and called him. He could already hear it from my voice that it wasn't right. Once home, he took me in his arms, we held each other intensely, no words, just the silence.
I am now a few years further, unfortunately, the MS is progressive and I am getting worse. Despite that, I try to enjoy life and write poems and quotes about being chronically ill. You can find me on Instagram under the name @msdivablog I write in both Dutch and English. We must enjoy every day that is given to us, for no one is promised tomorrow.