Thursday, March 31, 2011

Filling in the gaps...

Sometimes I don't blog, comment or even email. It's not that I don't want to, not that other activities get in the way. It's simply because I'm too exhausted to do any of it. I know I always do positive posts, but I feel that it's time I share this big part of my life with you too. To let you know, whether or not you even noticed, why I disappear sometimes.

The fact is I suffer from ME/CFS, although I don't like using the term Chronic Fatigue Syndrom, simply because the name doesn't cover it at all and because of that people often don't take it that seriously. Yes of course, fatigue is the main issue here and I'd be able to do a lot lot more if that part was resolved, but I'd still be stuck with a list of other symtoms such as pain, insomnia, RLS and getting stomach aches from basic foods such as bread.

I wanted to write this because it might help me accept it more. ME is so weird because on the one hand you've been tought that "everyone gets tired and you can't see it on the outside so you're quite lucky" and on the other hand there are few things that can take so many things away from you. That can be very confusing!

For the past few years I've been at home, it started in high school and I had to quit because of it. Some of you might remember me blogging about the art school course and making the cuts to go to art school full time. However those posts stopped soon after and I could never bring myself to explain that it was because I completely burned myself down in the first 3 weeks and had to quit the whole thing. So I just never mentioned it again.

There have been a lot of weird reactions. People get afraid or unsure and start avoiding you or they think that you're just making up excuses when you say you're too tired to meet with them. Which could not be further from the truth. Being at home has made me more isolated than I could ever have imagined(let alone still in my teens), I would never ever try to shut out even more people.
Then there are people who think I'm lucky and can just do whatever I feel like, but I'd give quite a lot to be able to work or study. Besides having little energy means I don't have much energie for fun things either, it's not a holiday.

Maybe I'm not clear enough to most people, when I see someone I tend to get excited and don't like to tell them about everything that sucks, but just enjoy the moment. Downside of that is that they never hear from me what is really going on.

I usually stay positive and try to enjoy the little things. There are some great things I probably wouldn't have had if it wasn't for ME: blogging, Etsy and some great people I met online because of it, including a truly amazing friend.
I'm really thankful that I've found such a great community online, yes you guys! Blogging really is one of the things I love the most and I thought you should know that I'd do much more if I could. But sometimes I can't bring myself to do it, can't focus or just don't have anything to say because nothing new has happened in my life.
Anyway when I'll feel better my blogging will get better and more frequent too.

I'm sure some of you out there will have the same thing, although I suppose everyone's situation is a bit different.
In case you don't have it yourself but know someone who does I have a request on their behalf. Like me, they might find it too hard to confront their friends with the bigger picture, but I promise that if you stick with them you will see first hand that you bring them lots of joy and they do think of you as a true friend, when you get sad because they cancel on you, just think about how they are feeling having to cancel one of very few fun appointments, then you will find that it's not that you don't matter to them, it is in fact that you mean the world to them!

P.S. If you have any questions, tips etc. you know where to find me;)


  1. What a lovely, incredibly honest post. My friend in work has just been diagnosed with CFS and now I will always keep your comments in mind :) Keep smiling xx

  2. You are very brave, we have a few ME patients at work, and I see how bad it affects them.

    You are wonderful

    (let me know if you need chocolate therapy!)


  3. Oh I am so sorry hun!
    Few weeks ago when I was sick I felt utterly exhausted for a few days and I thought to myself 'god, this must be what it feels like to have ME'.
    I can't claim to know that much about it but I would not wish it on anyone!

    Hugs and a hope you'll have a happy weekend <3

  4. It's wonderful that you can share like this on your blog...Although I can't personally relate, I still feel connected to you because I subscribe and read every post you upload, whether they come often or every now and then. I am a worse blogger than you in the sense that you have a genuine excuse for not being able to post...whereas I'm just bone-lazy O_O!

    I hope that, when you feel those moments of isolation, you can remember that the internet is a wonderful thing. There's always someone awake and ready to talk and share, no matter what time it is where you are <3

    Feel free to email me anytime!!

    P.S. I posted your prize yesterday! Sorry for the delay, I had to gather a few materials to make it <3

  5. Thank you for being so honest with us! These are the kind of posts that I love but so few people write.

    Happy Monday Darling! xo

  6. Wat heb je dat mooi verwoord! Heel dapper ook, om er zo over te schrijven. Je advies neem ik ter harte; ik ken op dit moment niet iemand met ME/CVS, maar ik vind het mooi hoe jij voor ons begrijpelijk maakt hoe dit voor jou is en hoe anderen jou kunnen ondersteunen.


Thank you for your comments, they really make my day!


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