Leva Med Interstitiell Cystit!

Lessons From an IC Diva

How I’ve Learned to be Happy After 30 Years with IC.

by Nyeema

 

Det här fick jag i mailen från IC-Network! En kvinna som har levt med IC i 30 år och delar med sig av sina bästa tips på ett väldigt positivt och härligt sätt. Det kan vara väldigt svårt att hitta en sån positiv attityd när man har det så jobbigt som vi har det, men kanske kan vi fånga upp något av det hon skriver om! Kram från Silverfox!

 

 

 

I define IC diva as an IC survivor who manages to get through their life with grace and dignity.

THE IC OPTIMIST • SPRING 11 • 5

 

We IC divas have no regrets and no apolo- gies about our bladder condition and all the issues related to it.

 

 

I call myself an IC diva. In actual- ity I am part diva part hippie (a dip- pie!?) I didn’t research the true meaning of the word, “diva.” I made up my own definition. I define IC diva as an IC survivor who manages to get through their life with grace and dignity. We IC divas have no regrets and no apologies about our bladder condition and all the issues related to it. We trudge on...in heels if we can. At this age, I am mostly in flats and wedges. Yet I trudge, rather, I strut on learning lessons along the path to a more joyful life. Joy Now is my motto.

This article is dedicated to the young IC divas who are trying to bal- ance family, fun, fitness, love and career while dealing day in and day out with IC. What I am about to share with you will save you much trial and error. Though I consider myself to be ‘a work in progress’ there are things I have learned that have

made my life more joyful. Take heed and take notes.

Over the years I’ve created an unwritten checklist of traits folks must have and traits they must not have if I’m going to spend time with them. Not everyone can handle the privilege of spending time with an IC diva. I have such ‘checklists’ about many things in my life. After much experience I’ve found that some jobs, just like some people, are more com- patible with IC divas. There are characteristics that define good friends, good jobs, etc. Finding these good things in your life will help you on your own path to a more joyful existence. Here is what I have learned, from one IC diva to anoth- er:

Good Friends

Your “good friends” don’t roll their eyes or stand at the restroom entrance and yell, “Did you fall in?”

when you use the bathroom in every store at the mall. In fact, your good friends don’t care if you pop a squat wherever whenever. Mine will gladly play ‘look-out’ to see if anyone’s com- ing up the trail as I take care of busi- ness behind the bushes.

I am thoughtful when asking folks to wait for me so I try to be strategic and speedy. If we are near a restroom, wherever we are, I will usually take advantage of this and use it. And with as much pop a squat experience as I have, I am pretty darn quick about it too. I will usually take opportunities to run to the restroom while my friends are occupied with other things. As they walk to the cashier line, I run to the bathroom. Folks that comment constantly or huff and puff when I say, “I’ll meet you in the cashier line” don’t get to spend time with me again.

Good friends couldn’t care less about how many times you go to the

4 • THE IC OPTIMIST • SPRING 11bathroom. They understand and will gladly hold your bags and wait for you while on the look out for good buys or good food.

Good Job, Good Co-Workers

(psychos vs. sympathizers)

The “good job” doesn’t care that you are in the bathroom every half hour to an hour. They appreciate you as a hard worker and trust that you will get the job done. Good co-work- ers are the ones who also realize that you run to the restroom a lot and their reaction is, “So what?”

Co-workers who are to be avoided are the ones who have a restroom scorecard. They seem to keep better track of your bathroom trips than you do. And...they just won’t shut up about it! Comments like, “Wow, you sure go to the bathroom a lot!” or “Didn’t you just go to the bathroom?” really get on my nerves.

I don’t always “come out of the (water) closet” with my IC. If I have a close relationship with a co-worker, I may confide in them. Usually peo- ple find out once they have shared their scorecard with me once too many times. My general response to these psychos is, “Yeah, I pee a lot. It’s just my thing.” My facial expression and tone send the most important message: “Get a better hobby and don’t ever mention this to me again!”

Now, I realize that some people do actually care and want to know if I am ok. You can usually separate these sympathetic co-workers from the psychos. My experience has been that some folks are just bored, nosy and unhappy. These are the co-work- ers who tend to gossip and are always trying to find out how much personal information you will share. And then they run with it. It’s best to set your boundaries with these types right away or they can make your work life miserable. Try my psycho co-worker response mentioned above then ignore them.

The “best job” is one you can do from home and manage on your own terms. If your IC enables you to spend more time at home, be cre-

ative about the talents you have to offer the world and start your own business. Note the quote, “IC enables you to spend more time at home.” Sometimes being homebound can truly be a blessing in disguise. Work from home can be rewarding and ful- filling. You may be surprised at your ingenuity and entrepreneurial spirit. Some of our best talents are ones we take for granted. Get advice from trusted loved ones. Others may be better at seeing your talents than you are. Brainstorm, research and stay encouraged. You’ll find your niche.

Good Partner

Your “good partner” rubs your feet when you are flaring or just because they know it can be hard to get through an IC day of bathroom trips and pain surges. At a movie or any performance they are more than happy to sit on the aisle with you, facilitating bathroom runs. (Don’t you hate stepping on toes as you cross in front of folks at the movies?) When you cancel plans to go out due to IC related issues, your good part- ner will make dinner and wash dish- es afterwards. Many a night I have said, “No” to a night of long awaited love making. In response, my good partner is happy to hold me in his arms and make me laugh when I really wanted to cry. (Tears because I am in so much pain and tears because I sure hate to pass up an amorous encounter with my lover!) Yes, I really do have a partner like this and hopefully you do too. Hang in there single ladies and don’t settle for less. Life is too short.

Good Kids

“Good kids” help out extra when they see you are in pain...even if you think you’re hiding it well. If they’re old enough your kids have been around you enough to know when you’re not feeling well. When you say, “I’m going to lie down. I’m really tired for some reason.” They translate that into: “Mom’s IC had her up all night and running to the bathroom all day and that’s why she needs to lie

down.” They are aware you’re in pain and they really can understand. As selfish as teenagers may seem, they love you and want to help.

Sometimes they are just waiting for you to ask for help so they can feel like they can do something for you. My son warms my heating pad, better known as “my comfy thing,” on a regular basis.

We are our children’s best teach- ers. Do them a favor and teach them to care for others. Teach them empa- thy. Ask for help.

Be Good to Yourself

Most important of all, IC divas:

forgive yourself for not making it to all the parties, festivals and other events that you may not always feel well enough to attend. Not everyday is an aerobic exercise day. It’s ok, eat less and do a little extra exercise next time. Appreciate the here and now no matter what it brings.

Sometimes the pain has to become life affirming. I know it sounds crazy. (Who really wants pain in their life?) But since we have it, let’s allow it to teach us something.

My pain teaches me that I’m still here and I’m strong enough to get through it without resentment, with- out guilt and with true peace and love in my heart and gratitude for the life I have. I know it sounds like a load of crap. This is the hardest part and it doesn’t always come easy. It’s work but it takes a huge unde- served load off of your shoulders and allows you to just take care of your-

self and get better. It is the best thing you can do for your mental health. So, forgive yourself so you can move on to healing. Sometimes my best medicine is to forgive myself then relax in a comfy chair, with a hot pack and a comedy DVD!

Conclusion

The things I have just discussed are not ideals. They are realities for me. I admit am always working on the guilt and gratitude part!

Sometimes when I am in the midst of severe pain or staying at home when I have been looking for- ward to attending an event it’s a challenge to be grateful and not feel like I am letting someone down (including myself). But I am a work in progress and far from perfect. Believe me it’s taken 50+ years to get where I am.

All the info I’ve given here comes from me working toward living a happier life on a daily basis. I make an effort each day to move further and further towards joy and away from whatever it is that makes my

life less joyful. I hope that these things I have shared will help you make you’re life happier right now, whatever your age. Joy Now.

Author

Nyeema is an IC diva and tree- hugging hippie who gets pedicures in massage chairs as often as possible (“Excuse me, but before you polish, I need to go to the restroom”). She also enjoys the outdoors and gardening. She was diagnosed with Interstitial Cystitis at 20 years old and at 50+ (who’s counting?) is focused on her f’s: family, fun, fitness, fabulousness (yes, it’s a word) and financial freedom. (Feel free to add another f). How’s your f’s?