Multiple Sclerosis: “My dreams broke, but my life turned out fine anyway”

multiple sclerosis
“My dreams broke, but life turned out good. Otherwise good”

MS, the disease of 1000 faces

When I was 26, I was diagnosed with multiple sclerosis. I worked as a physiotherapist in a neurological rehab center, and since I am medically versed, the shock was deep at first.

MS is an autoimmune disease that affects the brain and spinal cord. The characteristics can be very different and the course cannot be foreseen. That is why it is also called the disease of the 1000 faces. I had the worst fears and within a few years found myself in a wheelchair.

I went to Asia – and forgot the diagnosis

So I decided to make as much of my life as possible until I lost my mobility. A few months after the diagnosis, I went to a children’s clinic in Cambodia as an intern for a month. I was fascinated by the work there. After returning to Germany, my friend and I made the plan to go into development service. We got married and actually flew to Indonesia shortly after my 30th birthday with a development aid contract in our pockets. The excitement made me forget my diagnosis.

In Indonesia I worked as a physiotherapist in a small organization for the disabled. The misery there made me forget my illness again. She was relatively calm at the time: no flare-ups, hardly any problems. Then I became pregnant and on May 26, 2005 my daughter was born in Denpasar, Bali. I was overjoyed.

The relapses came with the delivery

Four weeks after the delivery, the relapses started. At first I had sensory disturbances, the feeling of burned legs. Then they became so powerless that I found it hard to walk. I didn’t dare to carry my daughter into the garden.

Multiple sclerosis is practically unknown in Indonesia. The cortisone required for treatment was also not available. When my daughter was eight weeks old, I had to fly to Australia alone to get high-dose cortisone infusions. Because of the trip and the medication, I had to stop breastfeeding, which wasn’t nice.

We brought the development service to an end with a bang. Back in Germany in 2006, there were further attacks, a paralyzed arm, coordination disorders and a lot of medication. I had to severely limit my job. The MS relapses largely regressed, but a job that demands a lot is hardly compatible with such a diagnosis.

When my daughter was 18 months old, I started distance learning. Even with a disability, I wanted secure financial prospects. After my studies, I was able to take on a great office job part-time. Everything was going well, I had the disease under control with medication, I had a great girl and a good marriage.

Then the depression struck

Then the MS surprised me with another symptom: depression. So bad that it became an independent diagnosis.

For months I lived in a gray pudding of despair and restlessness, unable to think.

I couldn’t really speak to anyone and even going to the supermarket was a bad trip.

I was sick for months, got relapses, paralysis, pain and also difficulty concentrating – another symptom of multiple sclerosis. At the age of 45, I was partially retired in addition to my severe disability. The mountain of medicines continued to grow, but at least the funds helped.

The sport put me on a good path

In a spiral of depression, cognitive disorders, job difficulties and retirement, I started jogging. First a minute, then 500 meters …

Motivated by a friend who runs a marathon, I eventually took part in a five-kilometer run, then on behalf of the MS Society in an inclusive ten-kilometer run, and finally in a half marathon – my MS diagnosis was exactly 20 Years ago and I was depressed too.

I am very proud of what I have achieved. Sport has given me a lot of strength and I am immensely grateful that I can go running. If one day that is no longer possible, I will find other ways to challenge myself and keep me on the right track.

Today I work part-time at “Bread for the World” and look after development workers. As a part-time job, I work on a voluntary basis for the MS Gesellschaft (DMSG) as a consultant in the program “Affected people advise those affected”, which gives me a lot of pleasure. Without my illness – that’s how I see it today – I would not have had many wonderful experiences. As bad as it is sometimes: I’m still very happy with what I have. At 26, my dreams of being diagnosed with multiple sclerosis shattered, but life was all right again. Otherwise good, but good.

The author: Caroline Mehr (48) is married and has a teenage daughter.

Brigitte