Let me introduce myself!

Selfie

I was born in the cold December of 1964. That is why I am probably now always looking for warm places 🙂.

Nadine-2j

I was born with the “Nemaline Myopathy package“, a rare hereditary muscle disorder. I have the high voice and small shape of a young teenager 😉 and my lung capacity is five times smaller than normal. I can’t climb stairs, it is very difficult to pick things up, and if I have to go further than twenty meters, I have to rely on my active wheelchair or my mobility scooter.

Among other surgereys, I had two life-threatening operations, on my spine and on my jaws. Getting a cold is not an option for me, because I cannot cough up mucus. I even went into a coma in 1991 due to pneumonia 🙁.
At the age of thirty I finally got the right diagnosis for my condition and had found good doctors, thanks to Spierziekten Vlaanderen, the Flemish association for people with muscular disorders.

Go-getter.

Because of my strong character and at that moment very positive gut feeling in 1996, against all advice I got pregnant. The pregnancy went better than expected, but the birth was one to forget quick! The epidural anesthetic did not go as planned due to my previous back surgery. I will save you further details, because giving birth to a healthy son after eight months of pregnancy is an incredible gift!

Kyrian
My pride and joy (mostly 😀 )

Career.

I worked as a clerk in a supermarket for three years and felt completely at home in my job. From my “glass desk” I could see customers come and go, regularly having a chat and had a lot of social contact.
Unfortunately, I had to stop this job after my severe pneumonia because I could no longer physically cope with having to go outside in windy weather. I really knew the famous “black hole” …

A good year after that I had my first ‘real life’ contact with Spierziekten Vlaanderen.
Initially, the introduction was very confronting. Seeing people with a much more serious muscular disorder than myself, I wasn’t ready for it yet …
But along the way I saw the positive vibe that most of them had here and the “feeling of fellow sufferer” made me decide a few months later to really commit myself to this association.

With my secretarial training and the fact that I was no longer allowed to work in paid employment, I was able to put my egg into it. For about 25 years I was able to share my experiences, I was almost full-time busy with the secretariat, and I helped organize all kinds of activities throughout Flanders.

Time for a new chapter in my life!

In the meantime, I think it’s time for something new. My “career” at Spierziekten Vlaanderen has ended in my opinion and I am ready to set new directions.
As a child I was already very interested in traveling, and now that I am getting older, abroad is only luring more!

However … traveling in an (electric) wheelchair is not always as simple as it seems, and my goal is to make hotel owners, restaurants, museums … aware of the lack of accessibility. Or, in the positive sense, clearly communicate via social media how nicely their location has been adjusted!

The photos are made by a simple mobile phone so my focus is on the content 😉.

So follow me! Join me on my adventures and enjoy my experiences with an occasional curse, but almost always with a smile 😉.

Watch out! Physically limited but assertive!

Nothing happens just like that in my life, coincidence does not exist. And also, a lot is (in my opinion) in your head. If you really believe in something and want to fully go for it, you can overcome a lot. I am small in stature, but I really “get stuck” … not easy … 😉.

Facts about me!

  • coffee drinker
  • very social, but can also easily be alone
  • Tinkerbell as an alias, small and (sometimes) naughty
  • sometimes talk before I think
  • impulsive
  • order and structure
  • emo-chicken, both negative and positive
  • crazy about meatballs with mustard
  • enjoy the little things in life to the full

P.S. You can see more photos in the “Me, Myself and I” gallery on the right of this page!