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#InvisibleFight What I wish you would say/not say

I very rarely go out, nor am able to do the most normal of daily activities, and showers are marathons!  The biggest hurdle of all? It is eating and drinking with the most normal of all digestive processes! 

THE FOLLOW THROUGH! While I do not want to gross you out or get too in the weeds? Like why is the grass always greener on the other side of the fence thing? Old school humor, Erma Bombeck? It might be the septic tank? My grass would be dead! Because it either doesn’t happen or happens before it is suppose to, creating a whole situation unto its self! You never expect to be hiding depends in your 40’s & thanking God your spouse has a sense of humor &  love to make you still feel special! 

Then there is the “broken brain” aspect to all of these processes not working for years and years! No, “Broken Brain” is not a technical term nor is “GP fog” but you will hear these terms repeatedly in our community! I slowly piece by piece realized driving was going to be a problem! About 10 + years ago a drive I had done for years utterly confused me! I had to call my Mom & Stepdad, ask for help! To get me back on track I was about 45- 50 minutes interstate or highway from home. This was before cell phones were being carried (at least by us) so it may have been longer! But this was the beginning of many changes! I clung to my life before Gastroparesis, Chronic Intestinal Psuedo-Obstruction Syndrome, Colonic Inertia, and Mitochondrial Malabsorption! I wish you could stand in this body just briefly to know what you cannot see then leave! Because there is no one I would wish this on but I want everyone to understand! Saying things like: if we would just eat, just use the right diet, just get out a little, try a little harder, do this or that? I wish, I pray you would just pause and reflect, if you had been given this diagnosis? Wouldn’t you have a researched yourself, tried every suggested diet holistic treatment suggested, went to every suggested Dr, with the glimmer of HOPE  it was the answer to our varying states digestive disjunction/paralysis?

 I was teaching helping with the youth at church, Girl Scouts, Baton Lessons, beginning graduate courses, training for marathon in hopes of triathlon, always eating healthy as possible, didn’t smoke, drink, or do drugs, raising 3 beautiful children with my amazing hubby, I want my normal life back and I am not giving up! I have even gone to a psychiatrist in this journey (early on) nope I am not crazy nor did I need their services.  

See, what I need more than anything is a basic understanding of the illnesses/ Motility Disorders I was diagnosed with and help from you to spread that understanding! I would like you to hold this visual in your mind! Do you remember Christopher Reeves (the actor who played Superman)? He was paralyzed after a riding accident. You can google it, if you do not remember him. No one would have walked up to him and said, ” If you would just follow this particular diet? You would be able to get off that breathing machine and walk!”  Or “If you would just concentrate really hard? I bet you could get up and walk!” He was passionate about trying to walk, and trying to bring awareness to others in his situation! While promoting new research and treatments, sadly he has passed away, but his memory along with his goals for future treatments does not! This is what I would like you to understand; these may seem like extreme examples, but for us the comments made while fighting to survive, educate, and create awareness with others they are like blows to an already broken gut!