Its hard to process and comprehend hours of consultations with some of the leading Professors and Consultants in the world in my condition.
They can be refreshing to listen to their vast knowledge, their empathy for the unlivable situation you are in and most of us all when they give you hope they are going to help.
Because thats unusual. When you’ve had a chronic illness you’ve faced years of no hope, blank faces, and having no trust.
As soon as I fly home though I want to hide away from it all. Especially when there’s extra news that’s not good. Some more complications to face, more comorbid condition to handle.
That’s EDS, a connective tissue disorder. That tissue that’s making up everything in our body is basically messed up. So slowly but surely part by part is being effected.Some parts worse than others.
My medical definition
E.D.S = Everything is Defunct it Sucks CHIARI = Chopping Heads Is Acceptable Recommended Infact 😂😂
I get too tired I don’t want to face it, I don’t want more tests because I always fail them. Like I’m the worst at medical test. If I pass I’m so surprised.
So when I come home and I don’t want to talk about it I don’t want to relieve the days in London. My heart skips a beat when the reports pop up on my email.
Because I’m not ready, just not ready to take the next step.
But my mother said to me “you have to let people know how it goes , people help you to get there”
I chose to go public with my illness so I could get the specialist help I need to see these top consultants that give me something that is more than nothing.
Due to peoples support and kindness you’ve saved my life last year and are keeping things managed while im still accessing the treatments and care I need now.
I know I should always update my Facebook treatment page with all the updates from London but I’m sure people understand why its hard and why I delay.
This is why I’ve chosen this avenue. It always takes a lot for me to share my health and medical details especially on Facebook. I see my fears and intimate details written up there about my brain, my heart.
Although I try to keep it to the point and without emotion in the posts it is emotional for me. These are things I find hard to even get my head around.
I see the hundred and sometimes thousands of people who read these personal posts while only the people who take time to react, message or comment and its so appreciated.
That’s why I want to use a platform like this for these posts and those who want to know what’s going on can click in the link and it’s not public on Facebook for everyone to just skim over.
I’m sorry its taken so long. It takes well over a week to recover when I come back.
I hope you all understand that 💜xx
In part 2 I’ll update the news from last week’s trip to London and plans going forward most importantly. So please come back.