#multiple exostoses

I know it’s been a long time we posted on this. Life’s been pretty hard. We’re both busy with school and going to the hospital. Now we have some time during the pandemic. I hope everyone is safe and healthy ( as you can be ). I promise from now on I will post more even talk. I’m even going to make an email. Specially for you guys that’s alone in this time. Or just feel alone. We are here for you. We love all of you. If you want to talk about MHE or just any other illness We are here for you. Or if you just want to talk we are here for you! I’ll try and make the email against tomorrow because we do live in Belgium and the time difference is different. Currently it’s 00:30 here. I will even give Naziha the info of the emails so she can talk to you guys too. ( she lost her password and everything of this tumblr ).

I hope all of you are happy, healthy and painfree!

I’ve never had a day without pain, or if I did I was too young to remember it. I was diagnosed so young, that the pain has always been there. I never had that moment of getting sick, or search for some diagnoses because my had already been named.

Maybe it’s a good thing, because I don’t know what it’s like to live without pain. So maybe I don’t really know what I’m missing. Sure there are a lot of moments where new symptoms and pains emerges but the old pains are always there. I don’t have that memory of being pain free and know that I can never go back to that.

Maybe it’s worse, because I’ve only felt pain. I don’t know what it’s like to not feel pain, and that’s just kinda sad. I don’t know how it feel for abled body people, so at times it’s makes it harder to explain my disease to them. Because I have no idea how they feel, and how to relate it to how I feel.

Part of me is wishing that I at least had one pain fee day so that I know what abled people felt like everyday. The other part of me is happy because I didn’t have to go through the pain of waking up one day and being in pain your entire life.

Soo I recently just quit school and I am searching for a different school so that I can study on my own. Not many of you know but I’ve got a chronical disease called multiple hereditary exostoses. Which basically means that I grow extra bones everywhere. I go to the doctors atleast 3x a month and have atleast 1x a year an operation. School just ended where I live (which is Belgium) and I couldn’t go to school that much because of my pain and I had to go every week to the doctor/hospital. I’m also on morfine plaster (keep in mind that I’m only 19y). I’ve been absent from school from the 3rd week of September. (School in Belgium begins the 1st of September till 30 June). The school never called me not even once to see how I’m doing. They never even send a message to me about my schoolwork. Never asked when I’m coming back. And yesterday I got a message from a classmate saying ‘it’s not fair that they(=school) failed you this year, I’m sorry’ and I was shocked apparently school can tell other people and the whole class that I failed but cant even pick up the phone and call to tell me? My mum send the teacher a message and she basically said “that it was my fault because I wasn’t motivated enough”. I wasn’t motivated enough? I’m sorry but everyday I’m in pain and I was nearly everyday by the doctor or in hospital. I have spend this year more in a hospital/at doctors than at home. I’m sorry that I couldn’t attend class while I was having revalidation so I could even walk. Because a couple of months ago I couldn’t even walk from the pain. So what I learned and basically what I mean with this rant is. I NEVER FAILED SCHOOL! SCHOOL FAILED ME!! The education system failed me! And I’m pretty sure I’m not the only one. This education system is not really suited for students that can’t go full weeks to school, that can’t go everyday because of an illness. If you went or still going through this just know that YOU NEVER FAILED SCHOOL! School and the education system FAILED YOU!!!

Sorry that this rant is so long, I just had to get this of my chest.