Hi Kelsey,
I am so sorry that things are not improving for you and that your life is not getting back on track. (I sort of hope that when my j pouch.org friends fall off of the grid it means that they are busy enjoying their lives again)
I have a best friend in Canada. We grew up together, both had our share of hardship and pain but she had a healthy body and I didn't.
She stayed, went to school, got engaged and married and had the whole 9 yards....home, kids, cars, pets and love.
I felt like the poor cousin that nobody will ever love.
As her life filled, mine grew emptier...or at least of the normal stuff...it was filled with doctors, hospitals and so many surgeries and complications that I lost count.
Her kids grew, I grew barren.
I went back to school at 25, worked and studied and barely survived with all of the hospitalizations and treatments (throw a couple of tumors, cancer treatments, salpangitis and pouch complications & surgeries into the mix and you have an idea)
It seemed so easy for everyone else. They went on vacation, I went to ER.
They graduated, I had surgery.
They went dancing and I went to bed...I was living in Paris and not having any fun. (still don't have a lot).
I cried a lot. I felt lonely and isolated and totally non-understood.
Writing was my salvation. I wrote short stories, poems, plays...I got lost in the writing...
I also walked miles, even if I had to fast to do it , I worked out at the gym for hours on end...I am very much a loner with this disease because I cannot explain or be understood...so I would rather not try.
Hubby, with all of his quirks (he's a guy), loves me. Doesn't understand me worth a whit but loves me anyway (his family is worse!). Doesn't get the exhaustion, the runs, the fear of foods, going to the movies or over to strangers' homes (or worse to their place for the weekend!)...I keep my peace, explain almost nothing these days and hide inside myself when I am feeling miserable.
I am a teacher too. A professor. I stand up in public in front of an audience of 30-150 and do not flinch. I speak for 3 hrs at a time.
I don't think about my illness, my pouch, my guts, my legs or back...I get lost in the teaching. (I also fast before classes and try not to eat during the day...just a banana, yoghurt and coffee/water so I don't need to go)...I forget about myself, my pain and my pouch when I teach...that is my saviour.
So, you learn what works and what doesn't, what you can and can't do and then play it from there...you find your joy whenever and wherever you can and you live in the moment even if the moment is 3hrs long...
Don't waste it worrying about what other people think...it is what you think that matters.
Sharon