Category Archives: About M.E.

New approach

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Daily household chores can be a pain. With ME it can be a killer. Hovering the tiniest room in my flat may mean I need to rest for half an hour afterwards.
Add to that the fact that the chores never seem to end…every week that same floor has to be hovered, the bed is hoping for new sheets. You get the picture.

During my rehabilitation at the beginning of this year, I discussed a lot of these chores with my occupational therapist. We looked at the way I did things and how we could make it less tiring and painful.
It made me think. I know the chores are tough and tiring, especially in my situation, but approaching it like that won’t make it any easier. Nor does getting angry with myself when I’m too tired to even hold the vacuum cleaner.
Slowly I’m finding a routine that works. I started by dividing my house in days. My living room is Monday, my bedroom Wednesday for example. The weekends I’m off duty. My flat has 5 rooms – and in this case I count the kitchen as a room and the bathroom, too. It only takes 5 days a week.

Now, onto the cleaning. I actually don’t call it cleaning or household chores anymore. On Monday I pay attention to my living room.
You heard it correctly, I pay attention. It sounds awfully Mindful, I do realise. It goes like this: instead of thinking “Christ, I have to clean this whole room…fuming!” I look around the room of the day and think “What in this room needs my attention?”. Hovering? Clearing up? Or maybe some styling? Dusting even? (the latter being my worst nightmare).
Today, Tuesday, it’s my study’s turn. Study is the wrong word. It holds a desk and my piano, but is mainly used as a shed in which my laundry hangs to dry, too. It’s a difficult room. Looking around this difficult room, I noticed a lot of things needed my attention. So I did some little bits of everything. Clearing out – sometimes all of a sudden things are good for the recycle shop – and reorganising and after that I was ready for some hovering. All this in under 20 minutes. Instead of procrastinating, I went for it and it cost me less energy than those times I looked at it as chores. Okay, true, I needed to lie down for 15 minutes afterwards. But all in all: Winner!
Guys and gals, this approach works for me. Like magic.

Cognitive dysfunction

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A re-blog! Why? When I read this post on Cognitive dysfunction, I felt so relieved. It perfectly describes some of my struggles that come with ME and it’s companions. And no matter how hard I try, all attempts to describe this to friends, family and others, fail. But here it is, perfectly explained. I want to share this with you, with my friends and family, with all others who try to explain but don’t know how and with those who can’t begin to imagine what it’s like. I want to share my views on happiness and daily life with you, but sometimes also my daily struggles…because that’s also who I am and I’d like you to understand a little. xt

November, my friend

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October 2014 and I weren’t friends really. No success was guaranteed by putting us together. Even when I decided to name the last week of October 2014 November, we didn’t work out. How could we, when on the last day of October 2014 my GP dropped a little bomb telling me to consider an electric bicycle.

Maybe you would blame it on the stars and the entire Universe. I want to believe that too. But isn’t that simply chickening out? When things don’t go your way: hands up and ‘It wasn’t me’? Reality is that my body is playing up, pain increases and my energy is only going more down. That didn’t just start in October 2014. It clearly is a message that’s been trying to come through for quite a while now. Maybe the Universe did feel it had to interfere getting it through and decided to make October 2014 a harsh one. Anyway, it’s pretty clear. I have to adjust to my body and energy. Instead of keeping on fighting it. And my brain finds that bloody hard! Scary even.

But, I’m always up for a challenge. New month, new pain killers, new therapies, new focus, new spirit. Ah November 2014, already I can say we got off on the right foot. You are not October, that’s one thing. And on your first day the one and only Enrique Iglésias (don’t we all know his songs by heart) liked a picture I posted on Instagram. Oh yes.

 

So, instead of beating myself up about the fact that October 2014 wasn’t very productive nor pain-free, November and I are gonna start all over again. Embrace each other. Ho hey!

This month I’m gonna focus on drawing. And meanwhile try and adjust to myself.

This is about a journey.

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I travel. I don’t go to India or Peru. But I travel. And so far I’ve come a long way.

Every day I come a long way. Some days the roads I travel were not made for travelling. But I travel anyway.

We need to talk about ME. About why most things I do, I do “on character”. My head tells me to cook. Eat. Get up. My body tells me I can’t. My legs tell me to give in and collapse. Sometimes my body doesn’t tell me. No cues, no notice. Instead it simply does.

But I just want to be. Young. Healthy. Living my life. Strong.

So I keep trying.

Trying when everything feels like shutting down and giving up.

~~~

Sometimes it gets the better of me. And even though I want to, there’s nothing I can do.

This is why sometimes I can’t write. Why sometimes posts won’t be regular, daily, always happy. This is about why even a trip to the supermarket sometimes takes hours, if not days, to recover. And why all the fruit and sleep in the world won’t fix it.

Nothing I can do about it. Other than giving in. Accepting. Trying to charge the battery. Dealing with and dividing my little energy.

~~~

The day I got the diagnose I found my personal manual. I found ME.

This is about Myalgic Encephalomyelitis.

And from here I can continue my journey.