feeling like I cant go on like this

[enk11]

Hi everyone...it has been a while since I put a post...I was doing well for 5 months with rescue instillations weekly,and valium for PFD which i FINALLY got a diagnosis for. well I also started phyical therapy and it was so painful, but i heard that it hurts before it helps. I also am seeing a regular threrapist...started out weekly and now I go bi weekly because of the money...so I am flaring bad about 2 weeks now and I have been trying to be proactive about my health and I cut my hours way down at work and I am in school at night and last year when the IC got realy bad it was the most difficult thing i ever had to do, was get through school that year and working part time, and in the summer I had 2 horrific flares...but the point is I am just so ready to give up. so far 5 really really bad flares this year, lasting about 3 weeks each. everyday the pain, but bareable i guess. couple days here and tere doing ok. so im thinking forget law school, forget working, forget everything, just stay home, try to get on disability and thats it...I am just always so exhausted and overwelmed. so that i dont have to deal with all my serious problems I get wrapped up in little insignificant ones...like high school like drama and the like. i guess i do that as a distraction, but its really just stressing me out. it has been so hard to do anything, the smallest things, even going to the bank, dealing with bills my health insurance is giving me a hard time paying, trying to appeal to them to pay my physical therapy, and alot of stress at work, doing house work, homework. school has taken a way way back burner although that should be the most important thing right now..well after health that is. I have invested alot ofmoney into the school so far,and it scares me that i might not be able to finish it. I know lots of you guys on here are on disability and cant work at all and I am so sorry for that and I am not trying to sound ungrateful or whatever but it is just such a hard thing to accept that it may be time for me to start giving up on stuff...like my career that i wanted. i know its time to get realistic,about this disease andwhat it is doing to me. I just keep fighting and fighting, day in and day out, trying to get through my days, completely exhausted and stressed..so at what point is it time to throw in the towel? what did you do to accept it, that it is time to stay home and take care of yourself? thanks for the vent.

[topcop229]

First off, welcome back to the boards. I am glad that you had so many months of fairly symptom-free IC, and I am SO very sorry that you are hurting again.
It's natural to be very overwhelmed right now since your symptoms have returned and it seems that you have quite a lot going on in your life. Remember that stress can elevate any health issue that you have, so (easier said than done) try to relax as best you can.
First, if you haven't made an appointment to get back into your uro's office, do that. Tell your doc how you are feeling and see if there needs to be a med change or increase to help you out.
I can totally relate to your issues with school. I just graduated in December, and last summer I was full-time and had to go into the hospital twice. I ended up having to withdraw from my classes and finish them up in the fall.
I think that you should create a priority list...right now, what's more important? Do you HAVE to work? If so, can you reduce your hours? If not, can you maybe withdraw from one or some of your classes or at least talk to your professors and see if they can cut you some slack due to your health issues? Don't automatically assume that you will have to give up everything, but you may have to wait on some things...you may have to postpone school or maybe just slow your schedule down a bit.
This is the time to lean on your friends and family as well. IC can make us very emotional, and it's always great to have friends that you can lean on. Maybe your friends can even help you with school, taking notes if you can't make it to class and such.
Try to keep a positive attitude. I know it's difficult, but don't give up! Like I said, you may have to slow down, prioritize things and do things a bit differently than you had planned. But that's okay. Your health is most important, so you should focus on that first and foremost. Talk to your therapist about your PT and the results that you are getting right now...also, talk to your therapist about doing some of the treatments at home. My therapist said you can buy a prostate/ g-spot massager and you can do some of the internal massaging yourself...or if you have a hubby or boyfriend, let him help you out. Maybe then you could reduce your PT visits to save some cash as well as some time.

Good luck!! Please let us know how you are doing!
Claudia

[Sarojini]

My opinion is, IT IS NEVER TIME TO THROW IN THE TOWEL.

I know I have gotten exhausted dealing with IC and other diseases I've been diagnosed with -- seeing five different doctors, dealing with insurance, dealing with medications, dealing with work and the stress it causes, dealing with my own frustration and how it can spill over into my marriage when it collides with my husband's frustration....

It is HARD living with chronic illness. I do believe, though, that if we take each day as it comes and deal with just the problems that day brings for a while and then remember to look for good things too -- the cardinal out the window and his bright red feathers, a single daffodil coming up and blooming despite the frosts we've had, the kiss my husband gave me this morning when we took the time to REALLY kiss before work -- living with chronic illness can become a different form of a good life in which we find joy in and treasure things we may not have even noticed before.

It takes a long time to get to this point. I know that often we have to go through all of the steps of grieving (sadness, denial, anger, etc) for our old life before we can begin to see a new one. The frustration or anger often covers up everything else, and there will ALWAYS be days where it does that, no matter what.

However, I think I've gotten to a point in my chronic illness saga where I realize that this is my life, and that without all that has happened, I wouldn't be "me" -- there are lessons I would not have learned, there are things I would not have felt, there are things I would not have learned to appreciate had I not become ill.

As I said, it is hard to get here, but I did start by taking time each day to try to relax and get away from my frustrations... sometimes I would think about my diseases and try to accept them as a new part of who I am, sometimes I would just look around me and think about things I could still do, things I could still enjoy, things I could still feel (like love, and yes, joy).

It's baby steps, every day, but no matter how tough it gets, please don't give up. There is a good life out there waiting for you to find it

[aprilmae]

I have to agree with the ladies here. I reached a point a couple of weeks ago that I just wanted to say forget it all. However, that is not me. I have always been a stubborn individual and I refuse to let anything control me.

We all have our days when we are feeling extra crummy and it seems that the easiest things would be to quit - however by doing that you are letting your illness define who you are. Yes, we have all had to make adjustments. I can't stay up as late to study anymore (I am a full time student), I have to take breaks more frequently to keep from getting overwhelmed or stressed out as that is my biggest trigger, but I am discovering ways to succeed.

I find that setting goals for myself helps me feel like I am doing great. On my really bad days it may just be getting my textbook reading done but that is something. I have also found that when I get that great "I just accomplished something" feeling I have motiviation to do more.

My personal health problems are causing more problems right now than they were a few months ago but I will not let them win!!!!! I may have to drop one of my classes - haven't made that decision yet. That does not mean that I have quit though - it just means I am having to make adjustments. Last semester I had to drop all of my classes because things got to be too much and it was at that point that I made the decision that when I went back to school this semester I would be in control..

Please do not give up on yourself.

[ICLori]

Please hang in there. It's very normal for there to be flareups with this disease. You should be feeling much better soon. Maybe it would be helpful to talk with your doctor about trying other meds to control the pain - maybe a referral to a pain management center would be in order.

I hope you feel better soon. You felt good before - odds are, you will again, too! Please don't give up hope.

Blessings,
Lori

[enk11]

Thank you all so much for taking out the time to respond to me...you all had such great suggestions. stress is definatley a huge trigger for me, and I can feel a flare up comming on but i still have a hard time slowing down and taking it easy, until it has already hit full force. like how jen said there are so many emotional stages I am going through. I did the why me? , the anger thing, the saddness thing, but im still sad and i feel like i still have not really been able to accept my disease. I am also in the fear stage now, worrying it will get only worse from here. I have lost alot of friends already because of this disease, because it makes me so overly sensitive and emotional and sometimes I am feeling like I dont fit in in the normal world. I know that I am normal and lots of people have all kinds of things they are dealing with, but it is just so hard to think about that when I am in such pain. to you guys who are/were in school, did your grades suffer because of IC? i feel like I have to work extra hard to begin with and then when i take pain medicine im so spaced out. I cut my hours down at work to 20 a week so i can get more rest. I have been trying to relax but it is really hard. I will definatley take jens suggestions about trying to notice small joyous things more. I hear 2 deep breaths an hour help...you are all so strong and such fighters....I really admire you guys. thank you for being here for me- erica

[ABliske]

I'm so sorry. (Group hug) I like how people here say that. When I have days like that (and today is one) sometimes I just want someone to talk to. I will be here to listen to anything you want to dicuss. I am still working with constant pain everyday. To make matters worst my husband and I are fueding really bad. I just want to feel better. I would try anything. I hope your flares go away!!!

[Georgia L]

Hi Erica,
The other ladies on here are so right... your words have encouraged me too girls!

The stages are very much a true part of this.

A little about me... I have had kidney / bladder, stomach, female, and joint troubles for most of my life. I have only in the past few years had some relief for some and more agony due to others... especially the IC.

I have gone from keeping a spotless house to crying over dirty dishes. I have missed many days of teaching school and have postponed going back to school (my dream is to get my specialist to be our school media specialist) the one we have right now is retiring soon and I wanted to get things done so that I could qualify but cannot.

In fact, I have had to take a medical leave from my job right now... praise the Lord I have a great principal who actually encouraged me to do this and has offered me a contract for next year.

I have taken this time to do several things.
1. I have been researching new medicines and procedures and have found a specialist that is going to try the interstim ... in fact this Friday. I know it will not cure everything but I have faith it will bring relief.
2. To take time to look for things just like this website to communicate with others who understand what I am going thru because so many do not understand.
3. To take time to grieve the loss of things and accept my lot in life... in the past I got well enough to coach cheerleading and twirling (things I did with some difficulty growing up but was successful at with hard work and determination) I had to give that up. As I mentioned, I had to realize that my house will not be Good Housekeeping beautiful each day and be ok with that. I have also gained an ugly amount of weight but I have to take care of my health and then worry about my jeans size!
4. To simply take time to rest and try to regain my composure. Time to practice my faith in God and to ask His guidance and help.
I have gone the gammet of will I take disability, will I never get back to school, I have even had to deal with the very real possibilty of will my husband leave me! But I have realized that if the time comes that those things are what happens... God will be there and I will not consider it giving up but giving God a chance to help lead me.
I wish I were able to "retire" but financially I cannot and even as I have been on leave and have had a not so bad day I have wanted to be at school teaching.
I don't mean to go on and on... I am trying to say...give things time... (I know we have ... we all feel like some burning nights will never end)
and most of all give it to God.
He promised to never leave us and never to give us more than we can handle.
I guess it is like one of my favorite sayings...
He has not given us more than we can handle we just have to realize that He will help us handle what He has given.
God Bless and keep in touch.
Georgia L

[topcop229]

Erica,
You are strong, too! Just the fact that you came to the boards here and allowed yourself to share with us and ask for help...that shows your strength. I truly believe that strength is really about asking for help and accepting help when we need it, not about "how much can I do on my own?"

As for your grades, don't worry so much about it. I know that may be hard, I just finished my bachelor's degree in December, and I had pretty much all As until last summer when my IC went way downhill. But I realized, you know, let me just talk to my professors, explain the situation, and not worry so much about my grades. They don't print your GPA on your degree, LOL. Of course you want to do your best and you want a good GPA, but just don't stress yourself over it.

It's okay that you are sad, we all have been sad over IC and will be sad again. That's natural. It's just important that when you have those feelings, you reach out for help, whether it's here on the boards, at home, with friends, or whatever combination you choose. Don't try to keep it all in.

Claudia

[**Angie**]

Something I caught that you said about meds making you loopy--there are different kinds that maybe won't make you "as" loopy. Ask your Dr to try something else. I know what you mean. It's hard to focus when your brains in a fog. We're all here for you--just venting it out helps relieve some of the stress of life with IC.

[enk11]

thank you ladies..your words help alot....it took me a long time to get this far and to share the way that I feel since I was always the type to be very guarded, but really sensitive on the inside...I will definitely come to the board more because you guys understand me and what I am going through beause no one else really does they think im overexagerating or whatever...Giorgia L good luck with the interstim...i hope it does alot to help you...and claudia, you look beautiful in those pictures! I havent spoken to my professsors about IC at all, except last year when one professor was picking on me alot in class, I let him now I was taking heavy medication for "a medical problem". I dont have a problem talking about IC with my bosses, we are a small office and really close, and a few friends, but itshard for me to approach a professor and let them know...I will think about doing it though, just to ease the stress a little, or maybe letting the registrar know..thanks again for your words everyone.... erica

[topcop229]

Erica,
Thank you, that's really sweet of you to say! Something else I just thought of in regard to school...maybe you should check with your school's disability office. My school had a form you can fill out and have your doctor sign in case you need special accomodations. I was going to do it for additional absences, because my school was very strict on that and sometimes I just had to miss. However, I ended up not doing it because I just went to my professors. But, if you don't feel comfortable with that, your school should have a similar form, I am sure all schools have to do it in compliance with the Americans with Disabilities act. And, I totally understand that it's hard or you don't want to think of yourself as disabled...but it's not about that, it's about getting the accomodations that you need and deserve.

[SrMaggie]

Hang tough

I agree with all of you about not giving up or giving in, but there is a fine line between letting the disease control your life and being realistic about what you can handle at any particular time.
I used to go like the engergizer bunny. I worked late into the night on projects, (never got up early to do it, though), skipped meals and just completely forgot that I had physical needs that were not being met.
At that time - ulcers got me down. I worked myself into a frenzy type existence. But I still had to have everything perfect for my classroom. At one school, assistants were hired. I got one in my room. It added to my stress at first, because I thought I had to plan for her, too. I would write up how and what I needed her to do. Things like bulletin boards, checking papers and preparing handouts or games were things that I was really picky about. Then my assist. said, let me do it for you. Trust me, I can do a good job. ...and she did! I started to learn then that a job may get done, not necessarily the way I would do it, but it was good in a different way.
Then I was principal. I lived in a house connected to the school - some of you know that I am a Catholic Sister. Schools did that inhumane thing of connecting the sisters' house to the school - then you never get away from it. The intercom was actually connected to the house! I really broke down there. I got in touch with a lot of issues and ended up taking a leave of absence.
I love to do things with my hands - knit, crochet, sew. I do it at night when I used to bring work home from school. Friends have asked how I have the time. This morning, actually, I told my self I NEED the time. I need to put my feet up when I get home from school. I can't keep going and expect that IC will go away. I need to be creative in a different way than I am in school.
Six years ago, I was in agony. Walking down the hall to my office took forever and it really is a small school. Now, it doesn't look as bad.
I have very few days with pain because of a Nurse Practioner who had the practical ways to catch the pain or lessen it if it got to me. Many of the people on the board have done the same - cold wash cloths, heating pads, using a water bottle to rinse after urinating instead of using toilet tissue...
IC is a terrible disease and I know I haven't given myself the permission to say that I truly do have it. That is very hard. In some sense, it is not life threatening, but in another way it is, if it controls one's life.
I know that I can't do some of the things I would like to do and that some people probably will not understand.
Our school had the opportunity to be in a parade. I knew I couldn't handle staying in line waiting for our turn to walk. The walk I knew would kill me. So, I didn't go. I got some reactions like raised eyebrows - the principal not participating? I had to let that go. Whenever I know that I'm going to be presenting, or in a position that will not allow me to leave - I get to a bathroom and try to prepare for the length of time it will need. Sometimes it works, sometime it doesn't. I find it very embarrassing to have to leave a function so many times. It's funny - I think the first thing people think is that you have diarrhea - and their thinking that for me would be worse.
I go back to a note my mother sent me when I was leaving to go into the convent - she said not to quit when things get hard, but to ask for help. She spoke from her own experience of losing one child who was 2 yrs old and then 3 years later losing another child - a twin - a few days after her birth and then 11 months later losing her husband. There were 6 of us that she had in the house plus her mother, an invalid. If she didn't quit then, I know I can go on.
Hang in there. When the going gets tough, the tough get going. Get your strength when you need it from these boards. Offer your strength when you have to the people who need it.