Mind of a Russian Gymnast, Body of a Geo Metro

I am the worst mix of a type of human; for the most part my brain has been go go go but my body... and sometimes my mind won' let me.

I come from a line of parents and grandparents who are very strong willed and determined and get things done no matter what. Taking my mom for instance, she has had cancer multiple times, is currently battling advanced pulmonary fibrosis and still does absolutely everything. My dad's dad, an upholsterer, a small time farmer and a very dtermined man...... My dad's mom.... was a histologist and also cooked Russian meals that took hours, all while battling cancer and losing a leg!!!! Needless to say we are a determined bunch and we don't let much stop us, until now.

I started a new physical therapy 3 days a week starting in October. The doctor who sent me to this physical therapy, as well as the actual physical therapist are very well versed in EDS and dysautonomia so I already felt like I was in good hands. It is shocking the amount of medical professionals that have no clue what EDS is and how to treat it, so having specialists that do is literally life altering.

My therapist, Alan, is also a fellow Russian so we immediately had so much to talk about and relate to... he is also very well aware of how hard headed Russians can be. In our initial appointment we talked about what was going on with me and about my past. Kind of like asking what a recovering addict's poison was, there was the discussion of "you have EDS, so what sport did you do growing up?" Knowing that things like gymnastics, dance, cheer and ice skating are among the top sports for people with EDS because you have an advantage being able to bend like a rubberband. I answered almost in shame, "I was a gymnast for 12 years..." . I could see the "cool cool cool... this will be fun" on Alan's face as he said "A Russian Gymnast.... you aren't hard headed at all?" in the best smart ass tone. Me, "yeah....".

I DO NOT like to admit defeat.... like... it literally kills me to admit defeat but as discussed more than once, I am much more disabled than I allow myself to admit. I have started using a wheelchair, a rollator and crutches on days my body just says no and those days have fewer and fewer spaces in between as time goes on, and for the lack of a better term... that just sucks. To make matters more complicated, I, Shelly Poe, am a people pleaser. Shocker, I know. I would rather suffer in walking and standing than make someone question why I am in a wheelchair one day and walking the next. I am admittedly worst about this at the kids sports. The part of being an ambulatory wheelchair user is that I can walk, I can stand, I can do things.... sometimes. Explaining that though to people who look through judging eyes is just ALOT though. So in my stubborn, Russian Gymnast mind, I just push through knowing I will pay for it later but still having that false hope that maybe it WON'T hurt me this time.

This train of thought is always followed by going to PT and telling Alan that I did something stupid.... like that I was social for two hours and my body rejected that. I think yesterday was the real sobering moment when for an hour we worked on standing..... specifically standing and not passing out. I watch others in PT working on rebuilding muscle after surgery or working on things to make them better athletes.... and I am working on standing. I really don't mean to turn it into a pitty party but at the age of 44, it's just a tough pill to swallow. Couple that with my Russian Gymnast mindset and obvious delusion..... I want to be doing PT to get better... not just in the way of finding ways to make my life easier.... but better as in, I can do these 40 exercises and be cured..... but unfortunately, the diseases I have have no cure.... I have already felt the best that I will in my lifetime and that is 100% depressing.

I still try to press on everyday though, researching ways to make even small changes outside of PT to get even a small dose of relief. The irony of this is that most of this research is done while sitting in bed, propped up by pillows, heated blanket on high and tears in my eyes from pain or utter frustration.

Can I take pain pills? yes. Will I take them? No, because my sister was an opioid addict so the best I can do is usually tylenol or that my rheumatologist put me on 100- 300mg of gabapentin as needed and she had to reassure me that it was not addictive before I even considered taking it, also explaining that people take 500- 900 mg at a time so this 100-300 mg dose was conservative. The problem with the gabapentin though is that while it does block my nerve pain over night... it blocks it to the point where I can't fell dislocations and subluxations that happen in my sleep until I wake up in the morning and by then popping my joints back in is hard because they may have been that way for hours and that the pain I wake up to is so intense that it's not worth taking beyond that the medication lets me actually sleep.

The problem lies in that my mind still thinks it can do things... so I volunteer, I try to do photo sessions, I try simply to enjoy the Christmas season and it all ends in failure. The things I volunteer for... I do and then it puts me in bed for 3-5 days. I try to do photoshoots as photography is my passion and my body gives up or picks up sickness because my immune system is that of a newborn and then it becomes a string of days in bed, hospital visits and my body literally shutting down. Enjoying the holidays looks like helping decorate the tree.. or bake... or wrap presents (which I also love) and I am back in bed..... the very last place I want to be. When those days hit and things feel really dark, I often find my mind going to "this would all make sense if I was dying"... but I am not dying. I have diseases that don't end your life, they are literal life sentence. I do not have thoughts of hurting myself or others but just trying to make sense of "why do I feel like this but I am not dying?" I question faith alot, I question karma, I question how is there no cure for something that has it's own pain scale because the scale from 1-10 does not cover the pain people with EDS have... but I still do it all with a smile on my face because I don't want other people to know how bad things really are.

I dissappoint myself, I dissappoint others.... it's not good. In the past few days my mind has taken me to finding accountability, coming to grips with reality and realizing that I am infact, disabled. I can not do the things I want to do that usually bring me joy. I need to find new things to bring me joy. I need to drop the Russian gymnast, do it all and do it right on the first try mentality, and settle into, what I can that won't hurt me later. I need to take care of me, I need to take care of my family and I need to focus on PT. I need to come to grips with what life is now.

I need to come to grips with that my body isn't a ferrari, it's more like a Geo Metro.... a phrase coined in PT, (Also see Alan and I trying to make the GEO Metro the official car of Ehlers Danlos Syndrome because what says Ehlers Danlos more than a car that falls apart and is run on a prayer and a good tailwind). Coming to grips with no cure and doing the best with what I have are all that I can do. Things will change in photography. I don't think I can book future sessions and I need to maybe book sesisonss with a shorter lead up time and only do one session at a time.... I don't know... I do know that I desperately don't want to quit photography but in all transparency, I don't see much of an option as I progress, also as my other diseasses progress. Life is a giant, I dont know- maybe right now and I just need to make myself willing to ride that ride.... Geo Metro and all.