I was recently diagnosed with Ehlers Danlos Syndrome. Taking in this new diagnosis and trying to “fake it ’til I make it” is becoming more and more difficult It’s hard to express the pain I feel both physically and emotionally each and every day. Imagine feeling like your skeleton rattles around inside your skin and there is nothing to hold it in place. I deal with that pain every day. I have days where I can’t use my hands at all and the struggle to get out of bed from one day to another is sometimes impossible to wrap my arms around. I have more bad days than good. Its like watching yourself deteriorate in a mirror and there is nothing you can do but watch. I flied for disability in February and so far haven’t even heard back on an initial approval or denial, yet I feel like a monkey jumping through every hoop they throw my way. My husband is wonderful and is trying so hard to understand the pain I feel every day. It’s hard to grasp the grieving of “how things used to be”. I miss my body the way it was before EDS. I miss doing the things I used to be able to do before EDS became worse. It’s so hard to take this all in and everything seems to happen all happen all at once. We moved across county and I miss my besties. With no way to work, cars have been repossessed and bills have gone unpaid.
The feeling of inadequacy doesn’t even begin to describe what goes on in my head. What are my girls feeling? Do they miss how their mom used to be? Why is this happening to me and what did I do to deserve this? Its a gene mutation and not something I inherited so somewhere on the assembly line something must have happened. Why do bad things happen to good people? Why do people see me park in handicapped parking and because they don’t see a disability think it’s ok to leave nasty notes on my windshield or tell me they are going to report me to the authorities? I miss me! I miss doing the things I love with the people I love. This is a life long debilitating “thing” I have to learn to deal with. It’s not a disease and I have so much anger towards it, it deserves no name except for a “thing”. I cry when I think about the possibility of missing out on things in my daughters’ lives as they get older because I am not sure I can handle this pain. My brain is so overwhelmed with learning the in’s and out’s of how this “thing” can take over my life. It’s truly mind blowing.
Today is another day that I saw the sun rise and the sun set and for that I am blessed. I will continue this journey I am now on and I will continue to be grateful for the people in my life. Today I feel like this “thing” has the best of me, but tomorrow I will wake up to a new day and every day has a new beginning and a new end. Tomorrow will be better.
Romans 5:3-4 More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope.