That ache in the stomach
Your heart’s pounding
Your anxiety’s taking over you
You feel something’s wrong with your body
You know something is wrong but the doctors can’t put a diagnosis on yours symptoms.
No matter how many appointments, blood checks and many exams they put you through.
Until one day, in a big white room, everything finally makes sense !
You can actually put all the pieces together!
On September 18th 2015, I learned that I was born with a genetic disorder called Ehlers Danlos Syndrome, type 3, also called hypermobility.
My body produces too much collagen! Who needs Botox when you have EDS?!
Which means my joints are unstable and hyper-extensive, they can dislocate themself partially or even completely!
I suffer from chronic musculoskeletal pain, skin manifestations like ecchymoses without trauma, and my little favorite growing up: troubles of learning, memory, concentration and perception.
I’ve injured myself so many times I can’t even count them anymore !
Sprains, luxations, subluxations, tendinitis, bursitis, veins exploding in my leg.
Let’s not forget all the falls I had growing up, I have scars all over my body to remember how goofy I was…
I rapidly became the coolest chick in the hospital! “What happen again?” “How did you do that?” “Why isn’t it broken yet?”
I love my medical staff, they always make me laugh. I joke around a lot, I like the fact they joke around with me too. It’s one of my ways to relieve me from the pain and all the stress about the situation.
What’s the point of all this? Let me tell you where it all begin…
March 2nd 2010, I badly sprained my left wrist at work.
Unfortunately, it didn’t heal as expected!
Ever heard of Complex Regional Pain Syndrome? Up until May 2010, me neither!
I have the type 1 which means my nerves are not irreversible damaged, so it will go away!
At least that was the good news…
You know when you have CRPS, even though your injury has healed, your nervous system still thinks you’re injured! It keeps sending you constant pain and crisis over it 24/7!
Different kinds of pain and uncomfortable feelings: burning, stabbing, needles, electrical shocks, cold pain, bone pain, hypersensitivity to touch, sweating, muscle spasms and weakness, skin color and texture changes, and so much more !
Our body, especially our brain is so complex and you got to admit it, it is sometimes weird!
Medically speaking, we tried a lot of medication, opioids failed, infiltrations failed, but an antidepressant worked, and still do!
Well kind of…
Neuroleptics only can calm your nervous system to reduce the pain but it doesn’t make it go away!
So I had to deal with it during the day without any help up until night, time for the antidepressant.
I learned some tricks over time: breathing control, mediation and autohypnosis!
I’m using the visualization technique, a real life savior! Once you get a hold of it, it’s so easy, you can control a crisis within 1 to 5 minutes!
We’re that bad ass!
Unfortunately, after 5 years and a half, my CRPS-I is still here!
We had some hiccups down the road…
Right after the first year anniversary of the accident, I got really sick.
At 20 years old, I was diagnosed with Endometriosis, another genetic disease, chronic painful disease who can get out of control if not supervised.
For my 21st birthday, I got the best gift in the world a doctor can give you: surgery!! We finally got rid of it!
No more pregnant belly! Oooh yes! People were actually asking me when I would give birth…
As for now, I’m happy to report it hasn’t come back yet!
When I finally got back on my feet, we thought CRPS was disappearing… Wrong thought!
10 days later, I got the worst crisis so far!
I was crying and screaming, the pain was excruciating! It felt like my bones were breaking in various places.
The day after, my shoulder was not at it’s normal place!
Yep, bad news, CRPS went up to my shoulder!
And it got worse in the year, with the tensions on the neck, the migraines began…
That’s when I started two antiepileptics, I discovered one of them was helping me with the pain of my CRPS.
After an another year, I had to stop it, my body started to reject it, and my nerves showed the worst of me…
Everyone was scared of me, even I was scared of myself. Scare that I would hurt someone, wouldn’t be able to control myself anymore.
I was another person. It wasn’t me!
That’s when I learned I had anxiety, That I was probably living with it since childhood! With all the trauma and hard times I had growing up, no doubt I was struggling!
So we started another antiepileptic that also treats anxiety, I still have ups and downs but so far so good.
I saw a psychologist for about 7-8 months. We talked about everything, he didn’t push me to talk about my teenage years.
One day I just couldn’t hold it anymore and now I just can’t stop talking about it!
During four years, I was bullied verbally, physically and sexually.
I was scared of going back to school everyday knowing what was waiting for me…
I tried to kill myself three times, to be true I didn’t want to die, it was just a call for help. I later suffer from bulimia for a few months…
No one notice how bad I felt… Not even my friends, I couldn’t let them give me a simple hug, that was too hard for me… All that thanks to the words and abusive behavior towards me by stupid teenage boys. Growing up, some of them apologize, good to know they had a conscience but the damages were done. I was broken inside.
It took me ten years to buried it in the past once and for all. I moved on. I felt good.
Understandably I still struggle with men. I need to find a new balance.
But I’ve finally began to open myself up to those who were able to tore down some of my walls.
During my therapy sessions, I’ve started to feel a different kind of pain in my entire body. I had to cancel a meeting because I couldn’t get out of bed and stand up, my body wasn’t responding. I was terrified!
Earlier this year, I learned I was suffering from Fibromyalgia.
Another chronic pain disease, the pain is different than CRPS. It comes gradually with the efforts you make. Except when you’re in a crisis period, your body just gets out of control.
Which it’s fine, I can deal with it.
What’s more pain when you’re already living with constant pain and daily crisis over it?
Same medication, same tools for relieve…
I’m not gonna lie, it’s depressing, I still cry at night from time to time. Sometimes for no reason, I’m just sad, scared of being lonely and tired of suffering 24/7.
The pleasure I had growing up was sports, everything was taking away from me, it was my way to express my feelings, it felt so good! I really miss that!
Thankfully I discovered Pilates over the summer, it’s perfect for my condition, it actually helps a lot with the pain and the endurance!
It feels good to practice a discipline again even if it isn’t as much physical as I use to.
But it’s fine, I made my peace with it.
Now let’s come back to the beginning and recap everything!
You will understand why I started with my last diagnosis: EDS3
* I badly sprained my wrist because I have EDS3.
* I developed CRPS-I over it.
* We wouldn’t have discovered my Endometriosis so soon, thanks to the medication.
* Then CRPS-I got worse, up to the shoulder.
* I got migraines, which led to the diagnosis of my anxiety.
* Without all that, I wouldn’t had Fibromyalgia.
* Finally, we wouldn’t have discovered my EDS3.
It’s a big circle, everything is related! Five years and half to finally understand why it happen!
Thanks to that I can finally let go of the past!
I’ve always said: there’s always a good in the bad, you just gotta find it!
If I had to recall every time I was diagnosed, I was devastated! That feeling when a tornado passed through your life and left you with nothing and no hope… You have to rebuild everything from dust, it takes a toll on you.
Although my family and friends have remained by my side, I’ve never felt so alone… They can’t understand what I’m going through no matter how hard they’re trying to.
That’s why I love them so much.
They try and try all over again and again. They’re the best support I could of ask!
You know, when you have two genetical diseases and anxiety, your mind is probably not your best friend!
It is not a good idea to rely on it!
I still have those 4 questions about life popping up in my head all the time!
* Will I ever find love and happiness?
* How can a man be interested in someone like me with all my baggage?
* Will I ever be a mom?
* Is it worth it knowing all the risks?
I know EDS3 is very common and not much people are suffering from the symptoms…
But I don’t want my kids suffering from it! I don’t want them to go through the same pain!
What about Endometriosis?
I would have to be under so close supervision!
But I’ve met many women with it, they have kids and they feel so blessed to have them, no matter who hard it was.
So I know it’s worth it!
Why do I always let my anxiety take over my fears!?!
I wanna be a mom someday. I wanna fall in love.
Find my own happiness. Even if I have to fight for it!
Because in the end, everybody deserves it.
Having a chronic pain illness, a genetic disorder or a mental illness should not define who we are.
It is just a part of us. No more no less.
We were someone before we learned from it, of course it changed us a little but we are still the same person, a human being like everybody else!
Life’s hard enough! Stop wasting your time by putting us in a case! We won’t accept it!
Disease or no disease, we are who we are and for what we are, our personality comes first!
If you can’t make the difference, your loss, not ours.
Valerie is a very simple belgian girl in her mid-twenties. She’s actually a French speaker!
Little fun fact: She only started learning English when she was 14. Her fifth language, but does Latin really count?!
She enjoys life with her family, her friends and her lovely dog Saska.
She loves a good book on a rainy day, some music, a movie or a tv show binge watch and her dog sleeping on her lap. That’s always a good day!
The simple things in life are always the best.
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