I have Ehlers Danlos Syndrome and Myofacial pain Syndrome. I have TMJ, hypermobility, loose ligaments...
I have Ehlers Danlos Syndrome. An often under and misdiagnosed disorder that often includes many other disorders with it. Every case is different. Doctors don't know a lot about it. It's difficult to find help and support. It will get worse, I will never have a "normal" life. But it is MY struggle, just like in some parts of the world someone's struggle is hunger, or finding a place to sleep, or going to chemo again. I know it seems like a very bold comparison, but it isn't. I know it seems like I am always happy, smiling, lovely, and things are going well, but remember that you only see what I allow you to.
I'm not going to write this for anyone to feel sorry for me, I just would like to open myself up personally to you all as you have done to me time and time again. I see you revealing your fantasies, fears, insecurities, and I want to connect more with you.
Here is my day. PLEASE remember this is not to make anyone feel sorry for me.
I wake up- What hurts? My knees, neck, why is there a lump in my shoulder? My neck? Don't push on them too hard, it'll give you a headache. Knotted up muscle, put heat on them, ice, heat, ice, put some oil and think about massaging it later and stretching it out. Don't strain your neck too much today, you want to be able to move it tomorrow.
Get out of bed- Crack. crackcrackcrackcrackFUCK. Sometimes I wonder if my back is ever IN place. I step on my feet, my ankles creak and move into place. Or out of place? They crack. I'm a tree.
Breakfast- Ugh Food. Morning smoothie. 2 servings of fruit, one of veggies, protein powder, chia seeds, drink up. What will I have for lunch? Gluten free, Dairy free, not processed, no red meat. Check labels. What the fuck can I eat. I don't want to get sick today. Read EVERY label. Ask what's in EVERYTHING. Hyper-aware of what I eat. Always aware. Far too many sensitivities to worry about. Be thankful you live where you have access to healthy food and water. Doesn't seem so bad now, does it? Be thankful.
Yoga. Best part of the day. Stretch, hold, breathe through the pain. Ofehlfbwlf my hip popped back in to place FINALLY THIS IS GLORIOUS!! (Yoga is literally the best thing for getting my hips back into place, warrior pose is a BLESSING). Stretch. Breathe. Remember to breathe. Feel the energy flowing through you and into the universe, connecting, recycling, breathe. Meditate.
Going for a walk is lovely. But the winter air freezes my joints...They hurt. They fucking hurt. My jaw aches, this will have to be a short walk. Go home.
Feeling discouraged, sit down to get a few orders done. Measure, cut, sew, my back hurts. Get the heating pad, feels a bit better. Avoid taking pills. Do a bong hoot. Try and suck it up just for a little while, you need to send these out tomorrow...
I set up my camera, I take photos for instagram and my blog, I spend time on SG making friends and reading things.
I think about if I'll be able to walk in 10 years. Are my muscles strong enough? So I exercise and eat well enough? I wonder if I'll be alive in 10 years. I wonder when my next surgery will be....How long will it take me to heal? When will I get help? When will I find a good doctor, when will WCB approve my claim again so I can get paid, when will the pain go away...
I wonder a lot what my future holds. Everybody does, I'm no exception. I look at my body now. It looks so healthy. It looks so normal. But it slides...Slips...Falls with every movement. Deteriorates. Would you believe me if I said I have the joints of a 50 year old woman? No, you wouldn't. Would you offer me your bus seat if I said my knees were too sore to stand? No. Because I'm a "healthy" 22 year old woman. There couldn't possibly be an invisible illness ravaging my body from the inside.
Because I look healthy, I am healthy, right? Because I smile, I'm not in pain, and I can handle it, right?
Because you don't see me writhing in pain for hours when I can't pop pelvis from being dislocated. You don't have to hold my hand while I scream into a pillow "WHY CAN'T I HAVE A NORMAL BODY WHY CANT I JUST BE NORMAL".
I am a fragile being, I am a tree, I am soft and I break.
But I am strong. And I see the beauty of the world through my tears. And I truly hope that any time you have a struggle in your life, you can remember that STRENGTH does not come from holding back your tears. It comes from pushing past your moments of sadness, learning from them, and using the pain to better yourself and your life and the life of those around you. It comes from finding inspiration, it comes from growing.
I love you all <3
