I have a muscle disease. So what?

As a little girl, I wasn’t anything special. I was blond, had ringlets and played with dolls and Barbie. Nothing special. But especially my mother had the feeling that something was not right. My motor skills were different from other children’s and I fell quite often. The mother’s feeling was right and at the age of 6 it was discovered that I have a muscle disease. Many years and (gene) tests later, a type emerged: Limb Girdle. In this blog I tell about my life with a disability.

There are very few people with Limb Girdle, because both parents must have the same faulty gene to have a child with this muscle disease. That chance is not very big. Because of the small number of people who have this disease, there is not much research done on this type of muscle disease. Because yes, it is and remains a question of money. Because of the small amount of research, there are no medications yet that can inhibit or stop the disease. This means that my muscle function continues to decline.

My head’s all right

In my youth I was still able to walk, but this became increasingly difficult. At a certain moment I ended up in a manual wheelchair, from the age of 12 I was permanently in a scooter and at the age of 20 I ended up in an electric wheelchair.

I really hated an electric wheelchair! I put it off for as long as possible, but at a certain moment it was really necessary. I really felt handicapped at that moment and I was afraid that other people would see me like that.

Partly that has unfortunately come true. People tend to assume that you’re not quite right mentally. People tend to talk about me, not with me. They also assume that I go to a day care centre, strangers ask me how long I have left to live and sometimes I don’t get a menu in a restaurant. It really happens!

You always have to prove yourself and I can tell you: I get very tired of that sometimes. I am now completely wheelchair-bound and can no longer move my arms and legs. Fortunately, I can talk well and there is nothing wrong with my head.

Breathing through a tracheal stoma

Lungs are muscles too, so it became more and more difficult to breathe properly and deeply myself. With every cold my lungs filled up and I couldn’t cough anymore. In 2008 it all went wrong; I got pneumonia, was very short of breath and was admitted to the ICU in the UMCG. It was soon decided that I would get a trachea stoma. This is how I am ventilated via a cannula in my windpipe. I spent months in the ICU and then months of rehabilitation in a nursing home.

I saw too much bad things in the ICU and became depressed. Fortunately, this is well under control with medication.

Living at home

After months I could finally go home. And home, that is still with my parents. Unfortunately, living on my own isn’t possible and living in a nursing home seems terrible to me. I don’t want to lose my own control, I want to decide what time I go to bed and I want to be made up every morning. That’s why I decided, together with my parents, to stay at home.

Because of the artificial respiration, I need 24-hour care. My parents do a lot, but fortunately they are relieved at fixed times by very nice care providers that I hire with a pgb.

Pleasure in my work

My sister and I have had a great childhood. We went on holiday several times a year and we often did fun things. My parents and I thought it was important that I went to a ‘normal’ school. I just wanted to fit in with society.

After secondary school and the four-year intermediate vocational training Social Legal Services, I got a job at a government organisation in Drenthe, with the help of a Jobcoach from the UWV. I have been working there for 14 years as an Advisor on Terms of Employment and Legal Status in the Personnel & Organization team. During my work I also studied labour law. I really enjoy my work, also thanks to my great colleagues.

Accessible diner

In my spare time I often visit cities, concerts and the theatre, I like shopping and I like to go on holiday. Unfortunately, society is not yet equipped in such a way that I can go somewhere spontaneously and it is often a challenge to go. Which hotel has a room for the disabled? And what adjustments and possibilities does the room have? After all, I have to take a lot of equipment with me. A cheap hotel is not an option; you are often bound to the more expensive and larger hotels.

And where can we get a bite to eat? Which restaurant has no thresholds and which has a disabled toilet? Before you know it, you are spending hours trying to find a suitable restaurant.

For this reason, we have set up the Stichting Toegankelijk Uit Eten (Accessible Eating Foundation). The website has to become a national register, showing how accessible restaurants are for people with mobility impairments. Our visitors can filter on a city or area, so they can see at a glance which restaurants are accessible. But you probably already read that in my first blog.

I celebrate life

Despite my disability and everything that comes with it, I want to live as normal a life as possible. After all, I am just a young woman of 32! This has been my ‘drive’ from a very young age. I am no different than you, I just can’t walk and need extra help. So I also just want to be treated like everyone else. There is still a lot to be gained.

Of course it’s sometimes a shame that I don’t have my own house because of my handicap, that I don’t have a family of my own and that I’m completely dependent on others. But you have to take life as it comes. When I see images of poverty or war on TV, I really don’t have it so bad. That’s why I celebrate life every 5 years with my family and friends!

In the coming months, I will take you with me in my life through a few blogs, give you ‘out- tips’ and tell you more about topics related to accessibility and inclusion. Curious? Keep an eye on the website!