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Posted 10/7/2008 6:34 PM (GMT 0)
When you're flaring and can't do much of anything, what are the things you miss the most?  Or even if you still do those things (like eating chocolate cake), what do you wish you could do without having UC cause a problem?

I miss taking my son for long stroller rides.  I miss walking to the end of the pier near my parents' lake condo.  I miss fried chicken, cocktails with my husband, and the ability to clear out 1/3 of a box of chocolates without paying dearly for it.  Even though I stay home with my son, I miss working (because I know I couldn't go back even if I wanted to).  I miss taking only one pill in the morning.  When everything else is going wrong in my life, I miss that blissful sense of "well, at least I have my health."  I miss restaurants.  I miss the old me.

What about you?

Posted 10/7/2008 7:35 PM (GMT 0)
I miss everything I was able to do before I got this DD...especially being able to do things whenever I wanted, spur of the moment was how I lived a lot of my life, now it's always planning around this stupid disease.

:)
Posted 10/7/2008 7:46 PM (GMT 0)
I miss not knowing what it's like to have a chronic illness. That is what I miss most.
Posted 10/7/2008 8:19 PM (GMT 0)
I miss a night's uninterrupted sleeeeeeeepppppppppppp....
Posted 10/7/2008 8:20 PM (GMT 0)
All of the above plus ibuprofen.

Posted 10/7/2008 8:26 PM (GMT 0)
I also miss being able to say "At least I have my health"...I also miss the 'old me'( and I have a two year old as well, so part of it is that), I miss having energy, I miss eating food and not feeling bad about it...oh, how I love this site that I can say all this!
Posted 10/7/2008 9:19 PM (GMT 0)

Limeycricketlover said...
I miss a night's uninterrupted sleeeeeeeepppppppppppp....

YES!  I second that.
Posted 10/7/2008 9:49 PM (GMT 0)
I miss getting up and feeling really good. would like to feel normal just one morning. even in what I consider remission, I still dont feel perky are rested. And I miss salads and ICE CREAM. But I dont like to complain to much because I know alot of you have it alot worse then I do. At least I get by with the asacol and canassa.
Posted 10/7/2008 9:57 PM (GMT 0)
I miss not having to worry about health. I miss not having to plan my life around a disease. I miss having unlimited options. I miss not having to worry about health insurance and money. I miss normal mornings. I miss salsa (and all spicy foods for that matter). I miss my energy.
Posted 10/7/2008 9:59 PM (GMT 0)
I miss the ability to plan a trip and not worry if I'm going to be in flare mode when the trip comes around.

I miss not having to spot the restroom of EVERY place I go, whether I'm in flare or not. It's habit now.

I miss popcorn and milk products.

I miss all the money I've spent on toilet paper in the last 14 years.

I miss all the time I've spent on the crapper.
Posted 10/7/2008 10:08 PM (GMT 0)
I miss having energy. Even when I'm in "remission" I don't have any. I miss being medication free. I miss eating mexican food and drinking Dr. Pepper. I miss going to the bar with my husband and eating loaded potato skins and having a beer or two.

Posted 10/7/2008 10:46 PM (GMT 0)
This is a sad thread.

My daughters best friend is only 4'10'' tall from having radiation to the spine. Her hair is wispy thin from chemo. She is pretty happy though.

I have another friend who had a stroke at 27 and his arm is all twisted up like a pretzel and he can only limp and barely walk. He is pretty happy.

I know self-pity, sometimes I am a queen of it. But this can be a dangerous line to follow. We all have horrible stuff that can make us miserable. But it's still life. You guys here are amazing people, there is stuff you say on this board that is so encouraging. You don't realize the positive impact you are able to have in peoples lives because of your maturity and experience. It's beauty from ashes.

I am sorry if I misread this thread, and Kiss, I am not picking on you. I am sorry because I know what it means to miss stuff, but I got so sad to read this I just wanted to encourage you all that in the midst of your struggles you guys are amazing gifted people who have really helped me. Thank you.
Posted 10/8/2008 12:03 AM (GMT 0)
That's cool, sunshine. I understand where you're coming from, and I have no hard feelings. I just know what I miss, and I'm curious what other people are missing. By no means do I feel like my life is miserable. I'm so blessed to have a wonderful husband and son and the ability to stay home with my child without suffering financially (well, not too much anyway). My family is super-supportive, which I know can be rare. For most of my day, I'm very happy. But its a fact of this disease that we will miss a lot of things because of it. And sometimes it helps to share those things with other people.

Every time I get down about this disease, I always think about my first thought upon hearing my diagnosis: Thank God its not cancer.

I always know that things could be worse, and I think everyone else here knows that, too.
Posted 10/8/2008 12:05 AM (GMT 0)
It's important to share our sadness along with our happiness, afterall if we tried to stay positive all the time then that wouldn't be very realistic...it's a good balance of being able to self-pity once in a while and also give encouraging news/info.

:)
Posted 10/8/2008 1:13 AM (GMT 0)
I just felt sooo sad to read this. Maybe it is me, like my coping style. That could be it. When I think about what I don't have I start getting very depressed. I can sink like a rock in a pond. The only way out of it for me is to think what I can be thankful for, and sometimes that is hard. I was trying to encourage you all, because I do think you all are amazing people! Not many people will understand what we have been through and have a good attitude.
Posted 10/8/2008 2:05 AM (GMT 0)

I know I am new and 68 but I don't really miss anything - thank God I am alive and able to live a somewhat (adjusted) normal life!!

ElaineNY

Posted 10/8/2008 2:10 AM (GMT 0)
I am thankful for this post. It helps knowing other people are missing things too. I miss having cocktails with my friends. I miss my hair. I miss going camping and I miss being able to eat all the spicy food I still crave and love...
Posted 10/8/2008 2:12 AM (GMT 0)
Sunshine - Just keep in mind that this disease makes us go from happy to sad and back again many times throughout the day. I've always been a glass-is-half-full kind of person, but sometimes I like to wallow in self-pity, and if others want to join me so much the better. Misery loves company. Its okay to share some negativity and complain a little. Sometimes that's the stepping stone to get back to other side (happiness).

I love this forum. The people here have pulled me through some rough times, and I SO appreciate that. They also comfort me by sharing their problems. It helps me to feel like I'm not alone during the bad days.

I'm sorry if it brought you down. That was not at all my intention.
Posted 10/8/2008 2:17 AM (GMT 0)
no no, (((((((((((((((big hug))))))))))))))))) I well know your feeling. It just made me think that maybe I am more susceptable to depression than most people!!
Posted 10/8/2008 2:21 AM (GMT 0)
I completely understand. I certainly get down more easily than I ever used to. I'm taking Zoloft for the first time in my life! I always thought I'd be the last person to need THAT! ;-)
Posted 10/8/2008 3:46 AM (GMT 0)
Yes, some people have it worse BUT, devil  to play devil's advocate, some people have it much better.

At least for me, when I'm having a bad day, it's really hard to overlook the fact that some people have it so much better than I. On a good or okay day, I can get past this disease due to the fact some people have it much worse. Sometimes we have those bad days and need to wallow.

Posted 10/8/2008 5:29 AM (GMT 0)
I miss Chili Relenos', spicy foods, and Alfredo sauce :)

I miss having energy, and the normal lifestyle I should had appreciated more when I had it.
Posted 10/8/2008 5:59 AM (GMT 0)
WE all have every right to miss things and to be able to express it as well, and who better to express it to than other people who can totally relate...we are all human after all.

:)
Posted 10/8/2008 6:19 AM (GMT 0)
I miss having vacation time! Where I work your time off is all lumped into one pool of hours - vacation, sick, and personal are mushed together. So people who are never sick (or drag themselves into the office in spite of being sick) and never have doctors appointments that conflict with their work hours end up with a good amount of vacation. But people like me use up almost all of their time off hours with sick days and doctors appointments, and there's none left for vacation.
Posted 10/8/2008 9:23 AM (GMT 0)
I miss two things...being able to exercise daily without completely wiping myself out...and secondly I really miss being able to drink a beer when I want to. The exercise I've toned back so that I don't kill myself, but I can't do nearly what I used to. As for the beer, it has fallen completely by the wayside. The discomfort just isn't worth it to me anymore.
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