How to live with CFS: in theory. How I got ill.

So yeah, this chronic illness that I have is very, very misunderstood. It has been misunderstood for many years, and will probably be misunderstood for many more to come.
However, there is more and more talk about it in the medical community. More and more doctors are realising that it is in fact a ‘real’ illness. (as if there are fake ones?!) More and more people are talking about it. More and more people are taking it seriously.

And with all this talk about it, come more people trying to understand it, which brings even more misunderstanding.
Let it be clear before I delve into everything else: nobody is certain what can and will actually help people with CFS, because you need to understand the cause of an illness, to truly cure it. But more and more people are coming up with their own way of ‘fixing’ it.

Continue reading “How to live with CFS: in theory. How I got ill.”

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Veluwemeer weekend trip

Kevin’s parents have the best holiday home, and we get to use it sometimes. It’s the best place, so peaceful and quiet and beautiful ❤
We had the best weekend there, and we even managed to take a little trip to the Kröller-Müller, a museum I’ve wanted to visit for aaaages. It was super fun, and there was a lot of really beautiful art.

Anyway, I video’d a buttload of stuff, and put it all together with some music, and here it is!

Here’s hoping we’ll get to go back for many more weekendtrips, yiissss. ❤

Black and white autumn

I used to always take pictures when I was out, a hike through nature, exploring a new city, exploring my own city, having fun, being with friends.
And then I realised, that this is the exact reason why I took so very few pictures these last few years (well, very few analogue pictures at least). So I decided to start documenting my housebound life with my cameras as well.

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The black and white makes it extra omnimous I guess, haha. But there’s a lot of good times in these as well. Game nights ftw ❤

Camera: Nikon Lite Touch AF
Film: Fomapan 400

Bye 2015

Well here I am, it’s januari 21st, and I’m finally sitting down to write my goodbyes to the last year.
I think part of me just wants to get 2015 over with. While another part of me isn’t realising it’s 2016 already.

These past holidays were the first time in a long, long time, where I wasn’t feeling the holiday spirit. I ended up having fun, seeing all my family, and celebrating together. But I just wasn’t feeling very festive.
I guess I kind of need that festive spirit to realise another year is around the corner.

So here we are, 2016 has arrived, and as it probably is for most people reading this, nothing is as I thought it would be a year ago.
So while I feel I should recap my year, as I do pretty much every year since starting to share my life online, I don’t think I will.
The year wasn’t exactly pleasant. I am more ill than I have ever been. And I am running out of options regarding therapies and doctors. The future is still a big black hole that I’m staring in to, and it never really stops being terrifying to be honest.
I didn’t get to see my friends very often. I didn’t get to see my family as much as I would have liked. Or at least, I didn’t get to do the things with them I would’ve wanted to.
I have felt as sad, frustrated and low as I have ever felt in my life. While at the same time I have felt hollow and empty and useless.
I have had days where I was in so much pain, that I really thought I kind of knew what dying might feel like. (Not many of those, thankfully, but they were there.) Days and nights where my asthma literally took my breath away. Days and nights awake in pain, or fast asleep from exhaustion. Unable to walk more than 50 mtrs. And needing days to recover from something as simple as doing my groceries (with help, and in my wheelchair). Giving up my volunteer job. My social life. Most of my hobbies. Feeling like a shell of the person I once was, in every sense of the word.

But despite all of that, or maybe because of all that, I also learned how to finally pace myself. How to listen to my body. How to say no when people asked me to do things. How to say yes when I had carefully considered if something was physically okay for me to handle. How sometimes saying yes because you just felt like doing it, can be a good thing. How to ask for help when it’s not given to you (okay, still working on that, but I’m slowly but surely getting there). How to allow someone in my life. How to realise it’s okay to shut some people out of your life. And how love really can be as wonderful, uplifting, exciting and amazing as I always wished it could be.

Some of this is just plain old growing up. And some of it is the result of the many years of several psychical and mental therapies.
And some of it is allowing myself to love myself, and put me and my needs before those of other people. But I guess that’s what growing up and therapy really is all about.

And here I am, recapping the year after I said I wouldn’t. How about that.
So here’s to you 2015, may there never be a year that makes me feel as empty, and may there be many more years of self-care, love and friendship ahead.

So let’s get to it 2016. I got this.

Sunset.

A lot of my films went horribly wrong this year. Most of which got stuck in the camera, or the other way round, got loose in the camera, meaning no picture was taken.
This one ended up being way darker than I thought it would be. But it still managed to capture the best sunset I had ever seen.

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Camera: Lubitel 2
Film: Kodak Ektacolor Pro Gold 1000 exp 1999