It's Just the Way You Are
I just turned 60. I have been questioning many things, regarding my health, for as long as I can remember. I went to doctors, or was taken, and never really got a satisfactory answer. I got a lot of "It's just the way you are" without any explanation as to WHY.
We did know that I had scoliosis, but opted to forgo bracing, because I had already undergone several major traumas in my young life, and I wasn't emotionally strong enough to endure 6 years of being ridiculed by my peers, for being "different" in yet another way.
The fall that changed it all
Fast forward to about 5 years ago. I had a minor car accident, followed less than a year later by a very hard fall. That fall changed everything, instantly. I started having vision problems, weakness, muscle cramping and/or spasms, horrible headaches, digestive issues, vertigo, crushing fatigue, and multiple other symptoms. I started falling down for no apparent reason.
It got so bad that I sought help, and almost by accident (I was being seen for something 'unrelated' when the subject was broached), I found out that I have a Chiari malformation, and that it is a birth defect. I had a Chiari decompression- brain surgery- 3 years ago, which helped. At least I don't fall down, or start vomiting at random.
A new type of flexibility
I do have ongoing issues though, that wax and wane, but never go away. I have since learned that I also have hypermobile Ehlers-Danlos. It's debilitating. I can't work. I literally don't know from one minute to the next how I will feel. I can't plan for spontaneous events. If it's big and important, I start resting up and self-care, for a week or more in advance, and make sure that I will have medication when I need it, because I WILL need it.
Which of the following did you feel or were accused of before your rare diagnosis? (choose all that apply)
This is the way I am
Truthfully, despite it all, finally knowing that there's a reason why "it's just the way (I am)" is VALIDATING. It all makes complete sense now. I am not a hypochondriac. I'm not exaggerating my symptoms. I'm not just lazy, and I'm not "milking" my situation. I am not a malingerer. I don't have Munchhausen; I didn't intentionally cause my own issues. I have crappy joints that are prone to injury. Yes, I have been accused or suspected of such things.
I am ill, and there's no fixing it. That IS my truth, no matter what ANYBODY else thinks. It's fact. I don't enjoy it. I don't actually enjoy saying "I told you so", but I sure think it a lot! The truth will set you free, even if the truth isn't great news. Hopefully, I can be more at peace, and better care for myself, for whatever years I have left.
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