By: JD Author, Reporter-Journalist
I try to always look at the positive in life, be thankful for everything I have because so many people have so little. Although I have not always made the wisest of choices when it comes to what is best medically, nutritionally and physically for living with Hypermobility Spectrum Disorder, Ehlers-Danlos and Progressive Muscular Atrophy, yet the effort is there. Focusing on the good things in my life has been a goal of mine, but today.. all positive fled my thoughts and I found myself feeling broken and alone.
I have stuck with six weeks of physical therapy despite the frequent visits to the hospital for interventional medications to slow the severe pain in my head that affects my optic nerves and causes me to lose my sight. But today, September 26,2017, was totally different. It was evaluation day. The therapist, who is polite, has a great sense of humor, and jokes with me the whole time I fight through pain and do my therapy, actually had me hating him when I left.
I know that sounds quite odd for me to not just brush things off and joke around or look at the funnier side of my medical craziness, but this time, I was not laughing on the inside. I was screaming, crying and just wanting to give up. I fight hard to stay positive, but the only thing I could see positive was being able to flee Knapp Physical Therapy, and try not to lose my composure in the process. Why the drastic change?
Well anyone with a medical condition or disease like Ehlers-Danlos, Hypermobility Spectrum, or ACM (my tri-fecta), you know there is no cure, and it just progresses at its will. So today I sat there as David, my therapist did my strength and agility testing, and informs me that I totally suck. Of course those are not his words, but they might as well been, because that’s how I heard it. He tells me that I was a 0/5 in some things I should be able to do, but couldn’t.
The only thing that ran through my mind was
just a few years back this “not agile, weak” body rode 160 miles in a bike marathon for the Multiple Sclerosis Foundation,
and this ass is telling me that I am basically a human noodle??
Do you know how hard it is to chuckle lightly and smile when you really want to just scream and beat the crap out of someone, something, anything? You’re so angry. You know you have been trying and despite the pain, you do your best, and it means nothing?? That is me, this is my day, today I felt like, and still feel like I am an epic failure. I know I am not, but knowing it doesn’t change the feeling.
Of course as soon as my appointment was over, David says, “we will start strengthening as much as we can what muscles still work. I agree with him just to be complacent for the moment.
My mind is now in the fight or flight mode and the flight is at 90%. I am fighting hard not to just give up. I am so tired of trying and getting nowhere. I am battling that voice in my head that is telling me it is time to quit, I am done! I have loads of family and friends who always tell me they support me and to fight. Right about now I want to yell at them too! Because how would they even understand what I am going through! They don’t walk in my shoes. about now I almost want to tell then to just shut up and go away.
I think I just need a good long nights sleep, then I can reevaluate how I feel tomorrow. Perhaps tomorrow my “get up and go” will be side by side with me, walking with me, motivating me. But for today, I have no idea where it went.
I need to wake up tomorrow and hopefully find my strength, because that is all I have.
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