Heartfilled minds.

Welcome to my blog, my little place on the big internet.

I am Iris, I am 23 and I live in the Netherlands. I believe in God and I believe in Jesus but religion is not 100% my thing. I study Applied Physics and I am currently doing my final master’s research.

I love taking pictures and I have my own small photography business. Sometimes I write short stories and poems and I am also learning to play the guitar. I am always singing (even in my sleep sometimes) and being quiet is something I’m not good at.

I have a few illnesses and am disabled. I have Ehlers-Danlos Syndrome, which causes my Fibromyalgia, Chronic Fatigue Syndrome, Irritable Bowel Syndrome, Migraines and Raynaud’s. I also have ADHD and a whiplash and I am self-diagnosed with POTS and dysautonomia.

My mental health has been all over the place but I am mentally healthy now.

So yeah, I try to blog about my life but it's mostly about my illnesses because I am an ill and that makes up most of my life.

**What you are viewing now, is my life, in its purest form. You may not understand the rambling of my mind in the form of a few words or a picture, but that is okay because I do. **

Creativity is the air that I breathe; it's in the words that I say, the moves that I make, the songs that I sing. Please accept me for that, because I have.

I hope you like what you are about to see.

Supposed to be productive yes yes yes I know uhm

Bastille

—Poet

I can’t say the words out loud
So in a rhyme I wrote you down
Now you’ll live through the ages
I can feel your pulse in the pages

(Source: thrillbandit, via fogblogger)

Anonymous asked: 11, 17, 22

11: how old were you when you started noticing symptoms?

I  have never not had symptoms, but the symptoms started getting worse when I was around 14. I was diagnosed with cfs then. My pain got worse very sudden and that happened around three years ago, which was really scary. I did not know what was causing it and neither did the doctors.

17: one symptom you would love not to have?

I think that it would be the circulation problems. I have blood pooling when it’s hot (think showers) which makes me feel terrible. I also have pretty severe Raynaud’s because of this which makes it extremely painful and nearly impossible leaving the house during the winter.

I can deal with the pain, the fatigue, everything, but the  Raynaud’s is limiting me so much and I hate that.

22: what is the biggest thing you would like people to understand about your illness?

That it’s not the same as being ill, or being tired. That it’s not the same as another type of illness. That just because I look healthy doesn’t mean I am healthy.

heartfilledminds:

As if my body wasn’t weird enough. Guess it’s some kind of allergy or something?

  1. pancakebatters said: hey i have those too, they always randomly show up. I thought it was either from my dermatographic urticaria or just random spots,I have them on my hands and arms mostly. (i’ve been thinking it could also be food related?)
  2. ech0tang0 said: I have a rash right now too, blahh. It keeps moving around, disappearing then reappearing, and it’s so annoying and itchy.

pancakebatters: I think it’s food related too, as I get them when my stomach is also feeling terrible. My housemate cooked dinner yesterday and there were a lot of preservatives in it and I don’t handle those well.

echotango: I am sorry and I hope you find something that helps soon<3

heartfilledminds:

So I’ve taken my extra strong melatonin and half a glass of wine so I should be able to sleep really, really well tonight.

I have to be at PT in 8 hours and I have OT on Friday. Next Tuesday I have an appointment with an insurance doctor to talk about welfare. I also have more blood tests, an appointment with an allergist, a dentist appointment and a oral hygienist appointment coning up.

  1. thespoonieamazon said: Busy bee! I hope you sleep really well <3

thespoonieamazon: thanks:) I’ve slept pretty well and I am at work already:)

blacquebird:

heartfilledminds:

International rare disease day!

Today is international rare disease day: a day to raise awareness about rare diseases. 

I have a rare disease: Ehlers Danlos Syndrome. Ehlers-Danlos syndrome is a inherited connective tissue disorder. This means that my connective tissue is not strong enough to hold everything in place. My skin is very elastic and tears and bruises easily. My muscles and ligaments tear very easily and my joints dislocate without reason. Everything in my body is too loose and this gives rise to a lot of different medical issues. 

I’ve dislocated my feet, ankles, knees, vertebrae, hips, ribs, collar bones, shoulders, wrists and fingers numerous times. Due to this I am always in pain. The pain never goes away and becomes worse after a new dislocation or subluxation. 

I am always tired and sore, because my muscles have to do a lot of work keeping everything in place. Even by doing something as simple as typing, opening a door, or walking, I can dislocate something.

There is no cure and the only treatment is supportive. Due to Ehlers-Danlos syndrome being so rare, it took me ten years to get diagnosed. Ten years of going from doctor to doctor, from hospital to hospital, from test to test, without anyone knowing what was wrong. Doctors told me I was making it all up, that it was all in my head, that it was psychosomatic. 

It is important to raise awareness so that it doesn’t take other people over ten years to get diagnosed.

What can you do?

Reblog this. It helps. Even if people just hear the name, it helps. I found out I have Ehlers-Danlos by this and it might help other people find out what’s wrong with them.

- If you think you have Ehlers-Danlos, you might want to look up the Beighton score. The most common symptoms of Ehlers-Danlos are:

  • Hyper-flexible joints
  • Joint pain
  • Fatigue
  • Sprains, subluxations and dislocations of joints
  • Muscle pain
  • Soft/elastic skin (not everyone has this though

If you think you have it, here is the Beighton scale, you get one point for every thing you can do. If you score 5/9 or higher you might have Ehlers-Danlos syndrome:

  • Placing flat hands on the floor with straight legs
  • Left knee bending backward
  • Right knee bending backward
  • Left elbow bending backward
  • Right elbow bending backward
  • Left thumb touching the forearm
  • Right thumb touching the forearm
  • Left little finger bending backward past 90 degrees
  • Right little finger bending backward past 90 degrees

IF YOU HAVE QUESTIONS, DONT HESITATE TO ASK ME ANYTHING. I’M HERE FOR YOU.

This is the simplistic, most descriptive explanation of EDS I have ever read!

Now back to my dislocated shoulder…

THank you so much for your nice comment:)

So I’ve taken my extra strong melatonin and half a glass of wine so I should be able to sleep really, really well tonight.

I have to be at PT in 8 hours and I have OT on Friday. Next Tuesday I have an appointment with an insurance doctor to talk about welfare. I also have more blood tests, an appointment with an allergist, a dentist appointment and a oral hygienist appointment coning up.

As if my body wasn’t weird enough. Guess it’s some kind of allergy or something?

danathepaina:

h413y:

Starting to use my twitter for things that matter.

Yes! I’ve thought that too. Also, what if their baby actually isn’t healthy? Does that mean they no longer want it? Or maybe they’ll love it less? People need a new phrase when saying they don’t care about their baby’s gender. Ugh.

this x1000