Symptom of IC-no life/agoraphobia?!

[DaniMSC]

I wasn't sure where to post this, but I am just so frustrated with what IC has done to my life. I am 27, had a promising career as a classical musician, and IC has taken my voice away from me, as well as my ability to work in any capacity. BUt I've resigned myself to just focusing on trying to get better right now.

THe thing that is driving me crazy is that well-meaning people in my life (not good friends, but old friends/acquaintances) keep reaching out to me and inviting me to things I'm afraid to do cuz of IC! I've told them I have this disease but I haven't gone into to every awful detail obviously, so they don't really understand what I live with hour to hour. A friend of mine invited me to our alma mater's football game two weekends ago and I had to pass because of my IC. THen he invited me to go to a Journey concert this weekend! AGHHHH! I want to go so badly, a big fun event like that would be just what i need to lift my spirits, but I am just too terrified to say yes! TO go to the concert, I'd have to go on a 1.5 hour car ride, wait outside the venue for awhile (where there might be no bathrooms), and then sit through a jam-packed concert where there will probably be huge long lines for the bathrooms. And what if I am on the worse side of my symptoms, when I have to pee three times an hour? That means I'd probably spend half the concert waiting in line for the bathrooms, frustrated and in pain. Not to mention that bunch of his friends that I dont know will be there, drinking and having a good time. WHat a great way to introduce yourself to new people, "hi my name is danielle and oh, excuse me, I have to pee again." So I think I have to tell him no, but how do I get him to understand that its my disease?? Another friend invited me to see her show but I'd have to drive myself for 45 mins and then make sure I got an aisle seat in the theater, and then drive myself home again (and the drugs I take make me horribly sleepy at night). SO I just can't do anything anyone invites me to do, and when I try to explain it to them, they just have these simple answers like "oh we'll stop the car whenever you need to go" and I'm like "great, but you don't understand how scary and unenjoyable it is for me to be in a crowded place where there are long lines for the bathroom, or where its socially frowned upon to keep getting up (like in a theater)." THe more I talk like this to my friends, the more I feel I am driving them away from me by being negative. But if I don't explain to them what its like for me, they don't understand what my limitations are. I feel like i'm in such a pickle...and the result is that I basically never leave my house and never contact any of my old friends.

[agilityme]

Hi DaniMSC,

I'm really sorry you're having a tough time. IC isn't life threatening, but it sure can be disruptive at times. My guess is that most of the people on this forum have struggled with this at one time or another. Turning down social invitations or even worse, accepting them and then canceling at the last minute stinks.

Prior to IC, my social life revolved around activities that were very physical and outdoorsy. Now, not so much. Someday, I'll be able to do these activities again and I don't want to lose touch with my friends. What has helped me is inviting them over to my home for dinner, movie/game night or just to hang out. That way I am in control over what I eat/drink and there is never a line to the loo. :)

Reading the success stories can be very encouraging. Many people go into remission or get enough control over their symptoms that they are able to lead "normal" lives. Hang in there......

Pam

[Mothergoose]

You can have a life, you need to have a different mind set. If you think you can't you won't.

I really try not to let IC stop me, yes there have been many many days I have psent in bed or said no to going somewhere because I am just too tired to go or plainly can't face it.

On the other side I have also peed behind many a bush, politely asked people if i may go a head of them in a line, gone into mens rooms, family rooms and handicapped room to pee. Peed in a jar in a he car. Panicked because we have gotten held up in traffic, asked people to stop for the umtenth time so i could go again, I have ran back into the house to to pee one more time before we leave, when i just went before i put my shoes on.

Walked back and forth to restrooms to the point of embarassment when you have to pass the same people each time at events.

I go for walks most days, I can tell you just about every good bush to pee behind for about a 10 mile radius from my house, and yes i have gone up to friends doors and knocked and ask if i could just come in for a min a and a pee, who cares what other's think.

I also sercertly felt very happy last week when we went on a one day road trip, 5 hours drive each way to go to a persons furnal, and I didn't have to ask the driver to stop once because he always needed to go about the time I needed to go so he stopped. (he is prediabetic but doesn't take care of himself, so he pees alot too).

Life is what you make of it, you still got to get out and have a life, maybe not the one you planned on, but a life just the same.

If you are new to IC, don't worry it gets better, it is a rough road to find the right Dr's, meds and foods, but you will.

Good luck MG

[eilostnyc]

I really feel terrible for all the young women this effects. I am older and really don't have the energy to go out and party etc. I am so happy just to go over my daughter's house and visit with my grandchildren. I really feel sorry for all the young women who deserve to live their life and have a hard time. God be with all of us.

[jcarramu]

Dear Dani

I just wanted to say I feel for you and how you are felling right now. I have had IC for years now and I go for months in extreme pain, urgency, frequency and all the other great stuff we deal with. I also feel like my social life has disappeared over the last few years. I had a fabulous career and lots of great friends and a fabulous family. Now I have no job, most of my friends have gone on with their lives and my kids are grown. There have been days when I lay in bed and wonder what is my purpose and who am I? I know this sounds pretty discouraging but I just wanted to let you know you are not alone in your feelings. I have been in a terrible flair now for 3 months and nothing seems to help. Last week I was having a horrible day not just physically but mentally, I mean take a bottle of sleeping pills days(wouldn't ever do it but I did think about it). Any how my sister in law called that day, we don't talk often but she just happen to call on this day and I was telling how bad things were(I don't usually talk to any of my family or my friends about my sickness, I just don't want to bother them) but as we were talking I said to her that I just don't know who I am and I don't feel like the old healthy me. She said to me that is because I'm not the old me or the healthy me and I had a choice to sit and dwell on who the old me was or start accepting who the new me is IC and all. She also asked me how did I expect people around me to understand what I was going through if I didn't talk to them and let them know what was going on. She told me that she thought that for the last 5 years I have been upset about something a member of her family had said or done because myself and my husband opt out of so many family events. I was mortified. I am married to a fabulous man that comes from a large loving Italian family and didn't realize that by not telling them everything about what was going on with my disease they took it upon themselves to assume something else. It really opened my eyes to so much. So I guess what I'm trying to say in a real long winded way is keep you eyes focused on today and what blessings you have right here and now and talk to your family and friends about the struggles you have. Those that love you the most will stand by and love you when your at your worst.

I hope you find some relief soon

Jacquie

[DaniMSC]

Thanks for the responses...but this is seriously killing me though. I just got a call five minutes ago to do a film project in SF this weekend, had to turn it down too. I was also an actress in my prior life. I had just said earlier today that if I have to turn down one more gig, job, concert, show, football game, trip, wedding, or fun event I would smash all the pumpkins I got with a hammer...It's a tough enough path trying to make it as a performer, and here are opportunities being handed to me on a silver platter and I've had to turn them all down. I worked my butt off to build a reputation for myself as a reliable and competent performer, and now that the payoff of being called up for jobs is actually happening, I can't do any of it!!!! Aghhhhhhh!!!!!

[polygon]

Please don't say agoraphobia is a symptom, it's a mental illness :P
That said, there are a lot of overlapping symptoms of agoraphobia and the lifestyle of an ICer. Not going to crowded places where you can't "escape" easily (like to go to the bathroom a million times), passing up invitations to social outings, being isolated.

It's really complicated, isolation can add to feelings of depression and anxiety, but the bladder needs to be treated first or concurrently with psychological symptoms.
I don't really know what to say other then the fact that I'm in the same situation (with the added fun of agoraphobia lol) and I hope things start looking up for you.
I mean, have you thought about getting support, to help you with the emotional impact of IC?

[kadi]

Hi Dani,
I can relate to much of what you posted yesterday. When my IC was at its worst, I barely made it to work, home, and medical appointments. I was really afraid that was what life with IC would be like. Now that I've found treatments that work, I participate in many more things. There are some outings I choose not to do because I know that with my IC they are likely to be more stressful than they're worth. I'm not afraid, I just make a conscious choice.

I think an important thing to keep in mind about IC is that the way we feel today is not necessarily a forever thing. When we hear "incurable", we often equate it with "untreatable" - and that we're just always going to feel bad. I don't think that's the case. I've had IC for 8-1/2 years now and I can do much much more now than when I was first diagnosed. And further, I just re-started physical therapy with a new physical therapist and I believe that I will get better than I am now. That's something to look forward to.

Hang in there. Do try to keep in touch with friends, even if it's just sending an ecard, a note or phone message. When you feel up to it, invite a friend over for dinner & dvd. Those actions break isolation without straining your body too much. And breaking the isolation is part of recovering from IC, I believe.

Wishing you relief soon,

[DaniMSC]

Please don't say agoraphobia is a symptom, it's a mental illness :P

I don't think what I wrote negates the fact that agoraphobia is a mental illness, but i am open to understanding better what the issue is. I used "symptom" to mean "problem that develops as the result of having IC." I didn't think too much about it, this is just a forum. I would also refer to "depression and anxiety" as "symptoms of IC" in the same imperfect way. It does not mean that anxiety and depression aren't mental illnesses in their own right. I guess "result of IC" would have been a better thing to say, but I didn't think of it. I take mental illness very seriously, and used to speak publicly on it as a sufferer myself and as someone who has lost a family member to suicide.

Anyway, I do think I may be developing agoraphobia as a direct result of my recent IC ordeal ("stressful environment" and "benzodiazepine") and as an indirect result of other factors (attachment theory).

I see a therapist who has been helping me with IC and other things, it's probably time talked to her about this since it seems to be getting more serious...

[DaniMSC]

Yeah, I think the "today is not forever" idea is really important for me to repeat right now!!! I used to try to go out and do fun things anyway, and peed in broad daylight or in the men's room or in ditches when necessary, but my symptoms have gotten worse since then I just find myself not enjoying being out. I just feel anxious and want to go home ASAP. It's just so frustrating. It is really great when people come to the house though. I live with my mom and step-dad now since I can't work anymore, and they have been gracious in accepting an adult child into their love nest :-p Makes it hard for me to have people over though.

[cocoanemo11]

I experience basically the same thing you do. My problem is that I'm still in high school.. I try to avoid going places where there are no bathrooms near by and I fear car rides! I ususally bring a little container with me on car rides just in case.

I definitely thing our minds work us up a lot though. Just last week, I was SO nervous to go on a 30 min. car ride, but I brought the little container, and I didn't have to go for almost 3 hours! It might be embarrassing but doing little things like that give you some piece of mind. :)

It's hard in school for me, and that's what I'm struggling with most right now. I always have the urge to go pee, but my teachers are extremely understanding about it.

As for your friends, I would explain to them exactly what IC is and let them know how you feel about long car rides or public places. Talking, in my opinion, is the best thing to do because it lets you relieve any stress you have. :bunny:

[RobertJ]

I am in the same place you are now as well. I actually had to quit my job last October when my frequency was to the point where I couldn't even drive for more than 10 minutes (and it was a 1 hour drive to work).
The fact that I have a Sports car, made it worse. Its a rough ride, and it jars my bladder.

But I will tell you this. Sometimes you are doing something so exciting, that you will forget about your bladder. Its happened to me on occasions. For instance, a family member of mine came in that I hadn't seen in 4 years.
I did everything the week he was here! I was able to drive him around town, go to restaurants (even though I didn't eat), malls etc..

He left a couple of weeks ago, and I'm back to feeling worse again.

[RobertJ]

I experience basically the same thing you do. My problem is that I'm still in high school.. I try to avoid going places where there are no bathrooms near by and I fear car rides! I ususally bring a little container with me on car rides just in case.

I definitely thing our minds work us up a lot though. Just last week, I was SO nervous to go on a 30 min. car ride, but I brought the little container, and I didn't have to go for almost 3 hours! It might be embarrassing but doing little things like that give you some piece of mind. :)

It's hard in school for me, and that's what I'm struggling with most right now. I always have the urge to go pee, but my teachers are extremely understanding about it.

As for your friends, I would explain to them exactly what IC is and let them know how you feel about long car rides or public places. Talking, in my opinion, is the best thing to do because it lets you relieve any stress you have. :bunny:

You know, me being a guy, I feel even worse about it. I have never seen a guy that had to go to the bathroom every 30 mins. I've worked in offices around many guys, and they always went every few hours. Not only that, IC and Prostatitis are very similar and I feel that's its embarrassing to tell another guy that you have IC or Prostatitis because its not something that a guy my age (30s) should have problems with! Every family member that I've asked , always brushes it off and says "don't worry about your prostate, that's not to worry until you become an old man."

[DaniMSC]

Robert you're right on about the excitement thing- it's true for me too. When I started a part-time job directing a church choir, I was terrified that IC would be a huge issue. Yes, I ended up having to hold it a lot and that wasn't fun, but I was always so engrossed in directing the rehearsal that my brain was able to override the bladder signals and I'd make it a whole hour without peeing! I'd often show up and leave exhausted as well, but during the rehearsal itself, I was having such a good time that I was able to muscle through.

Also I totally hear what you are saying about being a man who pees a lot...on the one hand, there are less lines for your bathrooms, but on the other, you're right, men typically go way less than women even without IC so it would feel even more exposed for you.

[smashley]

I believe always having to have a bathroom in signt is an annoyance, but it's not that big of a deal. The big deal is feeling so terrible that you CANT go to the bathroom, CANT stand in a room full of people and CANT go on trips because it's so terribly painfull. Thats the part that hurts me the most. So what if I have to go 100 times a day? But if that 100 times a day means i'm crying on the toilet because the pain and exreemely uncomfortable sesations of urgency, THATS what makes me so depressed. People don't understand, you FEEL absolutely terrible. They just think oh if I had to goo a liytle extra it wouldn't be a bug deal, because its not and eventhough thats part of the illness, its not the reason most of us dont go out. If I can barely get off the couch and your upset because I can't go to an event with you, then maybe our friendship isn't a true friendship. Thats what I would say!