As someone that suffers from Ehlers Danlos syndrome you deal with constant effects of not being able to do what someone who is able bodied can. The moment my diagnosis came, was the moment everything practically went to shit. I was unable to walk far, I wasn’t able to sit down for long and majority of the time I had to stay in bed in the mornings in order to get my legs and hips in the right position.
Now being a Law student after making a big change from Medicine I am trying to somehow get myself back into the rhythm of doing things for myself but obviously it’s not easy as having a chronic condition your days are never the same as each other. One day your feeling fine and the next like me you have a dislocation setting you back 5 days meaning no movement for 5 days and then you have the recovery time.
I’ve noticed that once you have an official diagnosis and people are aware of that, opinions and perceptions change. What people don’t seem to understand is yes we have a disability but NO we do not want to be treated like we do and we certainly want to be able to regain our independence so if you frequently point out to that person all the things that can happen because of their condition, self doubt is a powerful things and that will definitely affect them when the time comes to trying to gain your independence back.
It’s hard enough to accept that you have to alter and make amendments to the way you live your life without needing to have someone constantly remind you what your disability stops you from doing.
If anyone has experience this or felt this comment underneath and tell me how you handled it and always say to yourself, you are your own person and you are the only person that knows what you can and can’t do and if someone is trying to convince you otherwise block them out because negative energy is something we definitely don’t need.
We may have our good days and we may have our bad but I have now learnt that I shouldn’t be so dismissive of trying things as you never know.
Of course I don’t mean skydiving of a 25ft building of course LOL but trying to not let your condition deter you from doing things you love.
Stop talking. Your lucks in for the minute. I’m used to earning what I need for myself. It’s little enough and hard to come by but it makes me a queen in my own kingdom. My kingdom is my home. Don’t forget this. There has never been a man that I have felt so close to. Such a connection. A special type of closeness. Intimacy.
His touch. The way his hands feel. The feeling he gives me at the bottom of my stomach. I love him. I do. I’ve never felt like this before.
I’m not broken. My fear is commitment. What can go wrong? What will go wrong? Sometimes silence helps things become clearer. Sometimes silence makes things blurry. Love is simple, pure and delicate.
Trying to be something I’m not. Looking back into my reflection at how pure I used to be. Pure. What does that word even mean?
We all wish we could go back to our past selves. I wish I could. I can’t. The reflection we see in the mirror is not always a true representation of ourselves. What I see. What people see. We all have a different interpretation of what envision ourselves to be. Back to the mirror. Snap out of it. You can do this.
Lipstick on. Game face. Reality check over. Time to go back to pretending I’m in an idyllic world and that my writing is not failing.
Choke back your tears. Taste the salt slide down the back of your throat.
Go back inside. Check yourself in the mirror. Ugh. Turn around. Turn back hoping to see someone else. Cross through the kitchen. Pause. Feel the quiet of the empty house. No one watching. What can you eat? Open the pantry, look inside. Grab the jar of peanut butter. Unscrew the lid. Take a whiff. Stick your finger in the jar of peanut butter. Lick it off. Feel someone watching you. Shit. Turn around to face them. No one’s there. Put the peanut butter away. Wash your hands, careful to remove any trace of peanut butter. Reapply lipstick.
Head out the door. To work. Again.
This isn’t fun anymore. There’s something wrong with me.