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No reason...(well, probably  1000 reasons but...)...turned on the music and the sobs came...sad song...20min pity party...couldn't stop.

I had to fill out the forms for my handicapped status again and had to list all of my surgeries, diseases, treatments etc...did all of that happen to little'ol me?

Tears for the girl I used to be and never got to be...for her pain...the one that no one love enough to stick around for.  

(and finally did)

Sharon

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I am (paradoxily enough) preparing a conference on "Happiness".

They gave me a choice of themes and that is what I decided on (must mean that I need more of it!)...anyway I do tons of research and part of it is on what makes us unhappy.

So I started listening to playlists of sad songs...boy do they work! I couldn't stop the sobbing. 

Funnily, I felt so much better afterwards (stupid while I was doing it though).

I think that we all need more joy in our lives (Duh!)...Especially with all that we have suffered...there is a ton of pain and trauma that we are all dealing with every day (plus all of the normal stuff that life throws at us) ...A good cry seems to relieve the tension...

Sharon

 

Hey Sharon! I haven't been on the site in a long while (tried a facebook group, not as cool) but you have helped me get through a lot in the past. A big depression has brought me back to the site, hoping to find a hand to hold--I think a lot of the loneliness we feel is because there's such a pressure to be "normal" from our healthy friends (because they want us to be happy) that we constantly downplay our own suffering. This, for me, is mostly in the name of going against bad things people have said about me in the past. It's like I'm always subconsciously yelling "I am not playing the victim! I don't need you to feel sorry for me! Just listen--acknowledge my struggle is real! That doesn't mean I think I have the worst life ever!"
Anyway, before I get too far off track, I loved this line:
"Tears for the girl I used to be and never got to be...for her pain..."
That's exactly how I feel. And being deeply ill and deeply in a depression can exaggerate your insecurities vastly. My roommate (36) started dating a girl a few years younger than me (she was 24) almost a year ago now. I saw in her the girl I could have been if I didn't get sick. She had graduated, had a job, was healthy, beautiful, loved to read and take photographs and listen to music that made her feel more passionately for things in her life.
It was so hard to look at her and then back at myself, a few years older, no degree, unemployed, out of shape, overweight, mindlessly watching Netflix/going to the bathroom most of the day, deeply in debt, going nowhere. 
Because of things like this, I'm trying to spend less time on facebook. It's too easy for me to compare myself to others and come up short. Self-pity is a slippery slope, and the "Why not me?" inside is getting too loud... Looking forward to getting to know you all again 

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

 

Sharon

so beautifully written, so poetic and flowing with life. Thank you for sharing your most inner thoughts.  

 

Best not to worry about whether others understand but instead smile at them and closely embrace those who do. We are all in the same boat. 

 

I also also gain solace from helping others less fortunate than I. There's the guy in a wheelchair, Charlie, who has ALS who I talk to and take to the movies--compared to him my stuff is resolvable, yet he's concerned about my surgery!  for many years I  served dinner at a homeless shelter and socialize with the guests. Boy did I ever realize how fortunate I am.  The message is stay active, be involved. It will only benefit yourself. 

 

Peace, Janet 

 

 

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