This is me...
Melanie Perings, 40 years young, happily married, business school graduate and psychologist (M.Sc.), born and grown up in the beautiful city of Bremen and for the last few years living in Trier.
Diagnosis Multiple Sclerosis (MS) since 2007!
Wheelchair bound since April 2013!
Degree of disability 100%, flag G (severe impairment of the ability to move), flag aG (exceptional mobility issues), flag B (allows the person to be accompanied by another person for support in everyday life),
but non the less happy!
But it’s not the end of the world!
I love life!
There is so much beauty to discover!
In search for mobility and an independent life!
The life in a wheelchair with Multiple Sclerosis is not easy. Often it is very frustrating, humiliating and in particular extremely exhausting. On top of that there is the uncertainty of what the future will bring. Is my condition going to get worse? Will I become dependent on care? ... As soon as new symptoms appear panic sets in. Is it a new attack, gradual deterioration or is it going to go away again?
Non the less I am optimistic and generally happy! Despite massive restrictions I would like to enjoy my life, be independent within my possibilities, actively participate in everyday social life and be a role model for others.
I have always been very independent. I never liked to accept help from others, eventhough I happily supported others and as far as possible still do.
I was ambitious and determined to follow my dreams. After my Abitur (the German equivalent of the High School Diploma (USA) and A-Levels (UK)) I spent more than a year in America as an Au-pair. Following that I studied Economic Sciences specialising in Marketing and Human Ressources, subsequently I started working in a managing position as Marketing Director and Press Officer for a nationwide operating franchising business.
In winter 2006 my first MS symptoms appeared. It started with a light feeling of numbness in the finger tip in one of my little fingers. Which one I can't remember. It actually doesn't matter, as shortly afterwards the little finger on the other hand started to feel numb as well. The other fingertips followed. I went from doctor to doctor and not one of them could find anything. In April 2007 I was admitted to hospital via the emergency room/A&E department and a variety of tests were carried out. MS was suspected and was confirmed through another round of tests six months later. It's not a nice feeling, when you are sitting in the doctors office, he doesn't even look at you, rustles through his papers, while he incidentally mentions: "Well, I guess that's it then, you have MS." I was left pretty alone then and I still am today. The medical support is very poor in my opinion. One gets prescriptions for medications with extreme side effects, that are supposed to slow down the progression of the disability. But there is currently no cure!
When I got diagnosed with MS in 2007 I was still optimistic. I am a positive, happy and ambitious person. I saw the illness as a chance for a new start. For that reason and on the advise of my doctors I handed in my notice to quit for my stressful job in 2008 and started a four month long unpaid placement in a treatment centre for individuals with substance abuse issues. I liked the placement so much that I started to study psychology at the university of Trier that same year. Studying psychology had been a big dream of mine for a long time. I really wanted to be a psychotherapist, but never dared to take that step before, as I was afraid that the pain, grief and sorrow of others would weigh on me too heavily. I am a very empathetic person and I feel that being a psychotherapist is my calling. Meanwhile, I have successfully completed to study psychology. However, currently I am unsure, whether I really will start with the very demanding psychotherapist training after I graduated from university. The training is already very taxing and exhausting for the people that are well and healthy. But for the psychotherapist training as well as for doing a job or even just to participate in everyday social life, I require a vehicle adapted to my needs.
Possibly naïve, but somehow I have hope and confidence that my health will improve again. Of course I am not expecting a miracle, but I try to eat healthy, living vegan (purely vegetal) for more than 2 years now, except for fish every now and then (because of the good fats), and I try to stay mobile and active and to stay independent for as long as possible. The vegan diet has been shown to have positive effects within MS patients in long-term studies, even though many doctors don’t tell you that.
Being dependent is very difficult for me. Which is why I kept my diagnosis from others for a long time. I didn’t and still don’t want pity! I find it very difficult to publicize my illness and ask for donations. But what “normal” person can afford to buy a car for approx. € 80.000-100.000? That’s how much an adapted car with a so-called cassette lift and a hand-operated acceleration and braking system costs. A healthy, mobile person can buy a sports car for that amount of money. I would merely have a van, e.g. a VW T5, an almost empty box (the second row of seats has to be removed), which I can access via the cassette lift, then move to the drivers seat via a transfer seat base and then I can drive the car by using the hand-operated acceleration and braking system. A car which I can then drive independently and on my own, a bit of self-determination, freedom that will make my life a bit easier and that allows me to participate in everyday social life. Who wants to plan two or three days in advance where to go in order to organize suitable transportation (e.g. Ring and Ride)? Or even up to a week in advance for longer journeys. In addition to that I have to consider my non-predictable physical condition. I never know what the next day may bring, if I will be experiencing strong pain and/or muscle spasms, if I will be feeling weak and exhausted, if I will be able at all to go anywhere. I have to be able to make spontaneous decisions, today I am well, today I’ll do this or that, today I’ll meet with friends. I just want to do normal things, like meeting with friends, visiting my family in Northern Germany, quickly buying a few groceries, going to the doctors… Spontaneity is not an option if you are dependent on transportation that is accessible to people with disabilities like Ring and Ride. I currently feel very isolated. I rarely leave our apartment. Activities are reduced to the weekends, when my husband is home to drive me to places. But he deserves some down time, time for himself as well. He is not my personal taxi firm, even though he is more than happy to do it. I want to live my life self-determinedly and actively. Should this not be something to support?