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.
Holy smokes, can you believe it?! The fundraiser that my sister Rebekka, and my friends Maartje & Mirjam started to help me get a wheelchair, started exactly one year ago today.
~ here I’ll give you a couple of seconds to think about how fast time goes ~
I KNOW RIGHT! SHEEZ! Time is a crazy person.
I still have trouble putting in to words just exactly how much this fundraiser means to me. Even a year later I get so overwhelmed by all the messages and kind words and people who responded (and of course, ALL the people who donated, so many, so crazy, so blessed). It was an incredible rollercoaster ride, that still thrills me. Not to mention how happy I still am with my wheelchair, and my Roomba Irobot.
To each and every person who participated, in any way shape or form, a donation, or a share on your fb/insta/tumblr, or who just read it and knew more about CFS afterwards. Thank you. Thank you, thank you, thank you, THANK YOU!
Not but seriously you guys, it was so amazing, and I still feel so loved and accepted because of all you guys. Thank you ❤
THANK YOU ❤ ❤ ❤
And to thank you guys a lil’ bit more. I spent the last couple of weeks working on something special for you guys. *insert sneaky emoji face*
It’s kinda like like LotR. Cause it has so many endings. So it’s totally like LotR. In every way. Except no elves and orcs and gollum and such. And only seven minutes instead of several hours. But other than that. LotR like masterpiece, right?!
I hope you enjoyed it, as much as I have enjoyed using my wheelchair over the past year. I still hope that I won’t need it some day soon, but I’m going to try and enjoy the heck out of it now that I do ❤
About a week and a half ago I got a letter saying that I was to hand in my wheelchair by march 8, unless I paid rent each week that I kept it after that date. Dutch health insurance is only allowed to pay for it for six months, and my six months were up. It was a letter I had been dreading. My wheelchair, although frustrating to have to use, has given me a lot of joy since I got it. And I wasn’t ready to part with it.
There was a small change I could get a wheelchair from the government, but I was warned that CFS might not be one of the diagnoses that allowed you to get this. (remember the ‘Legal Shit’ from my previous post?! This is that. Ugh) And even if it did, the wait would be at least 8 weeks. My heart sunk into my shoes. 8 weeks stuck at home. Not really something to look forward too. But I e-mailed the city council nonetheless, even a little spark of hope is better than none, right?! I texted my family and shared it online. Immediately people told me they would help me out if they could. Which made me happy. I might not have a wheelchair, but I had the best people around me.
Little did I know. That my friends who were saying they would help me out, were being very serious about helping me out. My sister started a little fundraiser, asking for help on facebook, so I could buy my own wheelchair. My friends Maartje and Mirjam started e-mailing with my sister. And meanwhile Maartje put up a page on gofundme to see if it might make things a little easier.
And oh boy, did things escalate quickly after that.
Before I even got an e-mail reply from city council the first target was almost reached. And the money just kept coming in. Within 24 hours there was 1000 euros collected. The page was shared all over the internet, by my close friends, by my online friends, by my family, and even by complete strangers. I got the best messages send to me, people wrote insanely sweet things that brought me to tears each and every time. I felt like I was laying in a big tub of love, and as tiresome as it was, I just felt so incredibly happy. It was an insane rollercoaster ride of love, and I’m still not fully recovered and sure what the hell happened those two days. As you can see in my daily sketches from those days. I was alternating between crying out of sheer joy and thankfullness, and staring into nothingness thinking this all must be a dream, cause nothing this great could ever really happen.
Over the course of this past week, the sweet messages, and the money, kept coming in. A dutch artist even wrote about it in her newspaper column. Insane, insane, insane.
The final target of 2000 euros was reached a week after the page went online. Incredible.
This whole week, most of the things coming out of my mouth were something like “this is insane” “this is so surreal” “this is not normal”.
The money is absolutely amazing, I’m not going to lie. All of it will be spent to making my every day life a little bit easier, so I can hopefully recover enough to not even need the wheelchair in the long run.
But the best thing out of all of this is not the money. It’s all the lovin’.
There really are no words to describe how loved and accepted I have felt this past week. I was pretty close to throwing in the towel and giving up. My world seemed to be getting darker and darker. And all of this was just a beam of light shining on me, driving all the darkness away. You guys have no idea what you have done for me, and I don’t think I can ever fully express my gratitude. You have made one of the darkest times of my life, into something so amazing. Thank you, for the bottom of my heart, thank you.
(PPS. This post doesn’t come close to a proper thank you, but it’s all I have the energy for at this time. I will be dedicating many more blogposts to this incredible adventure. In which I hope to truly convey all the happiness you all have brought me. Thank you for understanding <3)
Without a doubt, 2013 was the weirdest of years for me. My health, my job, a love, friendships, colleagues, all lost and nowhere to be seen in the near future. I’ve never had worse days, I’ve never been sadder, I’ve never had to make big sad decisions like the ones I made this year. But 2013 also brought me so many good things. And they deserve some special attention on this last day of the year.
So here they are, my 13 of 2013.
There are oh so many more moments and people and things and animals and nature and cameras and filmrolls and other things that are missing from this list. Which is a good thing to realise. I have a lot be thankful for.
1. Oh nature you so pretty.
From forests, to the beach, to ice, snow, autum leaves. My love for nature grew a little bigger this past year. I’m a city girl, but nothing makes me happier than nature does.
2. My holiday to Egypt with my then-boyfriend and his family. So magical to see these ancient sites. And to sneakily take pictures when it’s not allowed. Flying from Amsterdam, to Sweden, to Egypt, crossing the river Nile, snorkling among the fishies, walking around the Tempel of Karnak, flying from Egypt, to Sweden, to Amsterdam. Such a good holiday.
3. My hair.
Cause it’s such a pretty colour and it makes me so happy ❤
4. UGH ANIMALS YOU SO CUTE.
Also. So many visits to zoo’s this year. YESSSSSSSS.
Seriously though. My family. I. Just. Cannot.
They are the most amazing people ever, and without them my life would be so much more difficult. I owe them so much. They make me so happy. My family is my everything. ❤
6. Holidays/pushing myself forward/nature/friends/music
My little mini vacation to Vlieland was so wonderful in so many ways. It was one of the few times this year where I had some hope of getting better and feeling a litte fitter. I managed to bike around the island thanks to an electrical bike. I managed to go to some concerts. I felt so free and so happy. And the island of Vlieland is so, so beautiful. ❤
8. Three surgeries.
But my god. Can I breathe like a mo-fo thanks to them ❤
9. Making the best new friends.
And seeing more of some old friends, and having so many good friends that I just cannot sometimes. I basically have the best people around me. I really do.
10. My kitties.
Cause my life is not complete without my Bep and Sjonnie. #crazycatladyforlife
11. Baking all the yummy foods.
12. My wheelchair.
For giving me some more freedom despite my bad health. While at the same time making me realise I need to take things down a notch, in order to truly get my health and freedom back to where I want them to be.
My good days, my bad days, my fun days, my sad days. They’re all in there. I never thought I had the discipline. But as you can plainly see. I do. One selfie a day. 2013 in less than a minute. The Ultimate Selfie.
Which is extra fitting, since 2013 apparently is the year of the selfie
To me, it’s also the year of selflove and acceptance. The way I look, the way I feel, the way I think. This whole year has been one big mirror shoved in my face. Which wasn’t always pleasant. But it turns out I’m not really all that bad. Or, not as bad as I thought I was, at least. I’m getting there, that place I want to be.
2014. You better be filled with lot’s of friends, family, funtime, yummy foods, good concerts and good health. Or you’ve got me to reckon with a year from now.
Have a safe and wonderful New Years Eve lovelies ❤ Champagne and oliebollen, Here I Come!
The homemade hand knitted plaid that the mother of a dear friend of mine made and sent to me to accompany my new couch; the incredible summer evenings and skies; finding some more acceptance and peace of mind; my sister wheeling me through crowds of people at Valtifest; all the crazy wonderful people at Valtifest; being able to rent a wheelchair so I could go to Valtifest; having friends I can lie on my couch with and watch YouTube clips together (looking at you in particular Jaapje); my incredible supporting loving and amazing family; analogue photography; being with the whole family on my mothers side in Veere and reliving our childhood together with my cousins when fishing for crab; my amazing grandmother; my mother booking the most awesome hotel room in Veere; Pixar Expo with the sweetest people; living close to the sea side; homemade vegan banana peanut butter muffins; my uncle giving me his whole vinyl collection which includes The Clash, The Cure, Siouxsie and the Banshees, Dead Kennedys and many more awesome music; Tumblr; the incredible Mim helping around in my house; Artis; Lilian being one of the sweetest and most understanding people I’ve ever met; baking my own bread; being able to bike a little longer than I could a few months ago; loads and loads of cups of tea; finding a physio-therapist who knows everything there is to know about CFS; taking my kitties on the balcony on their leash; How I Met Your Mother; Instagram; my new ‘vintage’ spotify playlist filled with my favourite music from around the 50’s and 60’s; conquering my fear of motorcycles on my daddies new bike; the heartwarming comments people give me when I’m being more open about my illness and how I try and deal with it, they really are what keep me going sometimes, so much love ❤
Damn. That's a lot of good things happening in my life. I needed that reminder today.
There really aren’t any words to describe the feeling of happiness I’m feeling when I think about what happened yesterday.
July 16 I wrote a blog post about my disease and how every day life feels for me. This post inspired my sister to try and help make my life a little more comfortable. What was the one thing missing from my wonderful Amsterdam apartment?! A good couch.
And even though I knew she was raising the money. I figured it would take a few months to get enough for a new couch. But nope. Yesterday she and my daddy surprised me with a brand spanking new couch. Bought with money from some family, some new friends, some old friends, and even some people I have never even met.
I just don’t even know what to say. There really are no words. I feel so blessed, so thankful, so humbled. Thank you Rebekka. Thank you papa. Thank you mama. Thank you every single person who helped pay for this couch. I can finally lay down completely, I can finally relax my leg muscles well while laying on my couch. You have no idea how happy this makes me. So thank you, really, from the bottom of my heart, thank you ❤