What I have learned from IC

[sabstory]

I just posted this on my facebook, I thought it might help some of my friends understand.

I am about 6 months into this condition (I have probably actually had it since Oct. 2009, but my symptoms went away until the beginning of this year). Interstitial Cystitis is no fun. It is why I am always in the bathroom, it is why I am always in pain, it is why I am tired most of the time, take lots of naps and have to be careful how I move my body. I have been depressed about what having this chronic condition means, I think chronic is one of those words that we say without thinking about the meaning. Chronic means that it doesn't go away, there is no cure, its treatable but with varying results. I have spent the last several days at home, in too much pain to be at work. This time has allowed me to reflect on life, pain, and making it all work, when it seems like the world is ending.

I believe that chronic pain changes the way we think about time. My goal right now is ONE completely pain-free day, I haven't had one in over 6 months, but I am hopeful.

Some things I appreciate so much more since my diagnoses: sunshine, family, sleeping for more than 2 hours in a row, eating what sounds good (as opposed to following a strict diet).

I have made some promises to my self as well. *I will never attempt to judge another person's pain, it isn't always written on their faces, some people smile and laugh, some cry, some get quiet, some talk continually to distract themselves (you all know that I talk it out most of the time, Jeremy goes on autopilot in the car).* I will never lose respect for someone because they are suffering. *I will never attempt to give medical advice to someone who has a condition that I have never heard of, and rarely to people who have things I have heard of, and even then, only if they want it.

(Please do not tell me to drink cranberry juice, it gets old)

*I will do my best to remember that everyone around me is fighting something, it may not be anything like what I am fighting, but everyone has struggles, and everyone needs to feel supported. I am extremely grateful to the people around me, just talking sometimes makes things seem less bleak. *I will appreciate whatever moments I can with my family, and sometimes that means scaling the birthday party back to a visit to Chuck E. Cheese, which didn't disappoint the birthday girl. *I will make the effort, I will push forward and figure out ways to modify my life without losing control. I will not let my condition destroy me. I will prevail, I may get upset and frustrated, but I will keep going. *I will always appreciate an encouraging word, even if I have to shake my head later at clueless advice (see note about cranberry). *I will remember that this condition affects many people and that I had never heard of it until I had it, so I will never be embarassed to share my story, because it might help someone else who just thought they had bad luck with UTIs. I think awareness of this condition would prevent others from having the condition progressing as far as it did with me, I would have sought help sooner if I had known it would get as bad as it did. *I will reward myself for making it through the day, I will not feel guilty for slowing down for pain, for resting when I am exhausted, or for rambling on about my condition.

I hope that someone discovers a cure, or better treatments.

[greeneyes]

AWESOME! Thanks for sharing.

[ICNDonna]

You sound like me 36 years ago when I was first diagnosed --- but we did find treatment options that work for me and that nightmare is by and large over. I do still flare sometimes, but that first year when I couldn't stand up straight --- hasn't returned.

I hope your day today is better.

Warm hugs,
Donna

[Linda May]

Amen

[Lori1975]

Thank you

I appreciate the post! What an uplifting way to look at it all, thanks. Stay strong everyone

[Mothergoose]

Very nicely written. Maybe you are like me and just the act of writting it down helps some how, and I am not the writter in the family.

Thank you for shareing

[rmmslat]

Wow thank you very much for letting me focus on the positive. This is my first time on here and I'm having a very hard time with this whole medical crap. You have helped me see the light. Thanks again!!!

[VickiB]

*I will make the effort, I will push forward and figure out ways to modify my life without losing control. I will not let my condition destroy me. I will prevail

Boy, that ought to be on a sticky somewhere around here! You know what, I believe you WILL prevail!

[sabstory]

Thanks everyone for the positive comments. I couldn't sleep, and I thought it might be helpful to write it out.

[katrina0410]

Your Message

Sabstory....that was so well said...I too am suffering and struggling with Chronic Pelvic Pain.....the only time i get relief from pain is when I get my bladder instillations.....i try to hold it in as long as possible...we struggle with this everyday and people do not understand our pain or how the pain feels...I walk around bent over a little from chronic back pain due to my IC...I walk around with the feeling of water in my bladder and it takes your concentration away because you are focused on nothing but this feeling in your bladder that won't go away....it pains me to just walk around my house and my house is very small....i have had all he procedures done to try to fix or at least limit the pain and nothing helped...my doctor told me my bladder is bad...I have spasms all the time....walking is hard....i have sharp stabbing pain in my vaginal area...it feels like bones in my vagina are cracking...I cry so much and don't want to get out of bed....when i do try to get out of bed it feels like bricks are trying to come out of my vagina.....I take pain pills everyday and pray.......you are not alone my friend....::

[skybluesoul]

Thank you for posting all of this! Beautifully said. I hope I can follow at least some of your advice and stay positive.

[flowerangela]

beautifully written. i should add you on facebook if ur not already on my page. whats your name on there? i love this post!