What exactly is MS?
MS (multiple sclerosis) is a chronic inflammatory, non-contagious disease of the nervous system. The entire brain and spinal cord can be affected. This is called in medical jargon ‘Encephalomyelitis disseminate. That means ‘scattered brain and spinal cord inflammation.
The fact that the immune system destroys parts of the nerve fibers leads to symptoms of paralysis. Muscles can no longer be coordinated correctly or sensory signals cannot be passed on correctly. The symptoms usually appear between the ages of 20 and 40.
There are different forms of progression. The remitting form, a secondary progressive form, and a primary progressive form. The severity of MS is extremely heterogeneous. If it is mild, the impairment is hardly noticeable. In the more severe, however, physical and mental health is significantly affected. MS is the most common neurological disease that leads to permanent disability and early retirement (around one-third of patients) in young adulthood.
Around 2 million people worldwide suffer from MS, in Germany around 120,000 – 150,000. The number of new cases is 3.5-5 per 100,000 inhabitants. Women are three times more likely to develop MS with relapsing disease, while men and women are equally affected in the primarily progressive form. A cure for the disease is currently not possible, but the disease activity can be controlled in some patients. This can alleviate the course and symptoms.
The story of someone with MS
I’ve had my MS since 1998, I’m a trained florist, and that’s why I have an urge for flowers and everything to do with them. In the meantime, I had to give up my job and am a disability pensioner. During my recovery phases, I always enjoyed going into nature to take pictures, for hours.
That gave me a different way of looking at things, and that’s when I was able to forget that I was actually sick. Always run, run, run that I just never forget it, or at some point, I can’t run anymore. (You can see the photos here, wonderful pictures).
I can remember that with my former mother-in-law it never really mattered that I was actually sick. If I was in pain again or I was not feeling well, I should smear the monastery spirit, Melissa, on my forehead. Not that I did it, that wouldn’t have helped anyway. I just thought it was silly. Unfortunately, I wasn’t very lucky in terms of work either. Nobody wanted to hire a disabled woman with MS. Even if I didn’t look sick.
Labor market and MS
Finding a job could drive you crazy. You felt worthless because you have an incurable disease. A disease called MS. I got unemployed, but only for a limited time. Then came Hartz4. The bad thing is that Hartz4 cannot be obtained endlessly either. After that, there is nothing more.
I had to insure myself and my boyfriend I at the time took over the costs as I did not have any income. By chance, I got a cleaning job in a hospital in Wolfhagen. I was employed there for a few years. I really enjoyed being around people again.
Due to illness, it became more and more difficult for me to work. So I then applied for a pension. At that point, I was already living alone after a breakup, and I was actually doing pretty well. I also moved after the separation. I could go for a walk there every day and I enjoyed being outside. I also adopted two cats that accompanied me every day on my walks. My camera was always with me too. From then on, photography became an important part of my life.
Unfortunately, I got under a bad influence and had to get out of the apartment urgently. A friend then offered me an apartment. It is handicapped accessible and access to the garden was straight from the kitchen. A very beautiful, large garden in which I invested a lot of energy and time to make it as beautiful as it is now.
I have a raised garden bed and a greenhouse. I grow my own vegetables and use them myself. I cook a lot so I always have food in the house. In my garden, I grow tomatoes, cucumbers, peppers, beans, potatoes, and more.
How people react to me
Well, how do people react to me? Different. You don’t actually see that I’m sick. But being alone made me a bit quirky. I’ve never had many friends. For this, I cherish the few friendships I have. I can still walk. But I find it difficult.
That’s why I have a wheelchair that I can extend when I go into the neighboring forest. I take a second one for city trips. I always find people’s looks very amusing. For many, a person in a wheelchair is still a strange picture.
Since I come from Northern Germany, my pronunciation is a little different. That’s why I’m offended a lot. The northern German “Schnauze” can still be heard. For me personally not anymore. I’ve been here in Hesse too long for that. But we’re just a little special and different up there and many of us don’t get along with it.
Meanwhile, I also go to psychotherapy, which I also have ADHD. As if my illness alone wasn’t enough. Whoever sees me cannot guess that I have MS. But I feel it in my arms They don’t really want to anymore. And my fingers are numb too. A lot falls out of my hands.
My legs don’t want to carry me as far as they used to. But otherwise, well, the memory has deteriorated. The doctors said it wasn’t MS. Unfortunately, that’s the way it is. I can live with it, why is there pen and paper?
Therapies and drugs
Unfortunately, I had to stop my treatment therapy a few years ago because I had no way of getting to the ordination. At that time there was no help from anyone either. But I’m very happy that I don’t need anything anymore. The neuro said I am stable, my MS is also stable.
Most of them are small signs of age that are now there. Of course, MS still plays a role, but I don’t have any more relapses. Actually, I didn’t have anymore when I first started with BT. But back then I was left with no choice but to go to therapy.
I injected from 1998 to 2006. First every tab, then every other day, and finally every two weeks. In between, pills were also tried. But they didn’t help. I’m glad that I don’t have to take anything anymore. After moving out in 2016, I actually felt very well, and it has remained that way to this day. Except for the little things that annoy me a little, but I can live with that.
My income is limited to a minimum pension and a small allowance from the social welfare office. That is why it is very important for me to equip my garden myself and also to process the harvest myself. My grandma taught me all that. My girlfriend also gave me tips and I’ve been doing it for three years now. It’s now very easy for me. I also try new things when canning, just to have a better variety.
I get some of the recipes from the Internet, or I think of something myself. My garden is pretty much a little oasis of calm in which I can switch off. Sometimes I can let my mind run free and nobody can talk to me in between. If I feel bad again and have too much on my mind, I just go out.
My garden is big and I can move around freely. Where my animals can move freely too. Two cats and a dog who, thank God, get along well. My dog gets the exercise he needs. I’ll go out with her and soon I’ll be trying the wheelchair for walking.
As for the subject of love, I don’t want to get into that too much. Sure, everyone wants to be loved and to go through life with a partner. Unfortunately, I have not yet found the right partner who can deal with my illness. I firmly believe that these people are out there waiting for me. In the meantime, I enjoy the love and loyalty of my animals.
Photography is my passion. I enjoy the beauty of nature and capture it in pictures. You can see my series of pictures on my various pages. I love to capture the moment of an impression in pictures. I think many people forget how beautiful it can be in nature.
It also has a lot to do with today’s education and technology. You are only on your cell phone or sit at the game console. The children are no longer taught to respect and appreciate animals and nature. It’s a shame, they don’t know what they’re missing.
What I have learned is never to give up. There is always a way out for every problem, only nobody will give me back my health. And I have to make my life beautiful, otherwise, the disease will break me.
Thank you very much
Dear Birgit. Thank you very much for your detailed report on your illness. I hope this report can make a difference and that people learn to be more empathetic with the sick.
Dear Birgit, I wish you all the best in your future life. Stay the way you are. You are a fighter and you are a very strong personality. You give your love to your animals and they give it back to you 100 times. Do not let it get you.
Not from your fellow men and also not from your illness. You are a unique, sensitive but also a very strong woman. One day you too will find your Prince Charming, who will read every wish from your eyes and support you in the fight against your illness.