The last few weeks have been arduous, to say the least. I have still been attending physical therapy, twice a week, for 7 months now. And I am proud to announce that my back is finally stronger than it’s been in over two years and with minimal pain.
My doctor has also decided to move me into therapy for my neck and shoulders. I am more than ecstatic about this development!
However, in light of the fact that I am now on my feet and more active than I have been in over a year, the rest of my body is remembering it’s hEDS problems as well as PoTS. So my breathing, heart racing and temperature regulation all decided to remind me that they don’t care what I want them to do and stopped cooperating, despite the medication that I still take.
I just became too comfortable with where I was at and had to re-educate myself on how we manage my PoTS self. So the SaltStick capsules have come back out as well as my blood pressure cuff. I am back to working on trying to rebuild my cardio now that my back is better.
It’s a brand new day! I have finally realized that my life will never be the same as it was before and that’s okay.
This illness has forced me to be flexible, (not the hypermobile kind) though I still can be resistant, which is silly because I’m not in charge of the disease’s erratic behavior! And it still presents symptoms I’ve never had before, even after all these years! There’s no being prepared, only being accepting.
Before this life of unpredictability, I was always so disciplined and controlled. Even controlling. I know I’m getting better at learning to roll with the punches. But I can do better, so I’ll keep trying.
When I was finally diagnosed in 2018, I was told I’d be better in one year. At the one year point, I had several surgeries and was told it would be another year. Truth is they didn’t have a clue and there is no “getting better”.
PoTS and hEDS are relapsing and remitting, just like my autoimmune diseases. They’re all lifers. I can accept being ill. I don’t like it, but I can accept it.
Oh, my body requires structure. It’s a juggling act for sure. I’m definitely figuring that out. I’m a work in progress. But I LOVE that my husband and I are both learning to roll with the punches.
Looking back, I wish the original doctors didn’t give me the hope of a timeline to wellness. They knew better. I’m very goal oriented and set high expectations. Of course, I came crashing down when reality was revealed. If the doctors were honest with me instead of thinking they could do the impossible, I would’ve learned to adapt instead of resist and push hard to get better. That misguided mentality and poorly utilized energy cost me a great deal.
I’m still learning to be a different version of me. A more mellow, flexible me. I’ll get there! I’ll get there when I get there.
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I love the irony of needing to be flexible with hEDS. Not something I am good it. I too am not comfortable with reacting to how my body is each day. I would like it do to as it is told!
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