5 minutes, 34 seconds
Since a few weeks ago, I‘ve been writing for a Dutch blog called Mantelzorgelijk.nl. They asked me if I’d like to share my experiences (which I am writing on my personal blog) and the first thing that came to my mind; am I a caregiver? For me the term caregiver is just a name – like my age is just a number.
Since my wife got the diagnosis MS, we live our lives a little bit more carefully. Well, to be honest, I’m a bit more careful. I see my wife doing stuff like cleaning, cooking and cycling and I’m asking her if she is okay. “Are you tired? Do you want me to help you? I just want to know if you’re doing too much.” It sounds harsh but I guess it’s just the insecurity I have to live with.
Like I said before, you just get the diagnosis and that’s it – deal with it. As a person living with MS it will be your life. When the MS is at ease, there is nothing to worry about. Don’t get me wrong but it’s just easier to deal with as long as there is no progression. My wife has relapse remitting MS. She takes medication every morning and in the beginning she sometimes forgot to take her tablets. “What will happen now?” Nothing of course did. But my wife had to find a way to not forget her medication. We talked about a schedule. We talked about every night when you go to bed, putting your medication on the toilet seat cover first. When you wake up the next morning and you go to the toilet, you see your medication on the seat so you can never forget! She replied; “But when you go first and pull the seat up?” “Hmm, that’s a good question, dear.” I said.
While my wife is not thinking about MS, I am constantly busy with MS. It’s my way of living. It sounds weird and I know I mean it in a different way. I need to have control of MS – the MS of my wife. She is tired. She is losing her balance. But she is still living her life. She is doing sports three times a week. She is working three days a week. And I am checking on her! I am controlling the MS. What is the MS doing with her? Is she more tired at the weekend?
Believe me, it’s not some sort of obsession. I just found a way to be here for my wife and to live our lives. It’s amazing. Yes, I’m a control freak. But I’m also passionate about MS. Once again, it sounds weird. But it feels right. And that’s why I started platform.ms – to be here for other MS’ers!
It’s a place to share their stories and others – the stories of people living with MS and the stories of people around them. Platform MS is written in Dutch and meant for the Netherlands and Belgium. We have a group of seven people who live with MS that write on a monthly base. And every week there are more and more stories coming.
I have to be honest; Platform MS takes up a lot of time and I do everything in my spare time. My wife and I agreed that when our daughter is in bed, I can work on Platform MS. And during this time, I read a lot about MS and how it involves so many lives. Not only the life of the person living with MS but also the partner, the children, friends and even co-workers.
And because of the many stories I read, I can share those experiences with my family. In that way I’m helping the MS community but also helping myself understanding MS and how it can affect a family.
Approval date: February 2018
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