Deir,
It's so nice to have this forum where we can be for eachother when we feel lonely. You have every right to rebel against the disease and all it takes from us. I am newly married but have no kids at the time. I can only imagine that it's harder when you have kids to take care of while healing yourself. On the other hand, it's also nice cause they depend on you and you now have to get better you, for your husband, for your kids, for everyone who loves you and even for us, or newer patients who someday looking up to us to as an example of success. When i have to miss an event, a dinner where all our friends but us go, or when my husband talks about how he wanted to see grand canyon some day, i feel sad, cause all i think first is are there bathrooms there :) I am smiling today at this, because i am having an ok day, but tomorrow it might be bad. The thing is i think better days are increasing over the bad days, and that means it's working. It can tap on your shoulder all it wants, but you are getting better and that process of healing is working even if you are sad or down. It's working in the background so you just have to keep going and in the meantime, for your mental and emotional wellness, maybe start meditating, or a 10 minute walk outside when you feel ok, wake up and smile at yourself in the morning for thankfully being so strong and having the will to fight it. Do not feel defeated when bad happens after good, it's a battle, and at the end knowing you will win, ignore the little battles lost at first. I remember you were having issues with the protocoal at first, what supplements/probiotics are you taking currently?

I am a year into treatment and before I started and probably for the first few months I would cry (probably multiple times) everyday.  Give yourself some slack. We are human. Seemingly one day we woke up (although we all know now that this was a long, long time coming) feeling terrible with nowhere to turn. For me, it took months of going to doctors (the best in the country, mind you) with no answers before I found Matia. It was terrifying, but I will tell you, those months not knowing, searching for answers on my own and praying that someone would be able to help were the absolute worst. Finding Matia, this website and these people that have walked this road before us (and are walking it with us) was a HUGE turning point, that we are all so lucky to have stumbled upon. And now we are pursuing a treatment that effects every part of our lifestyles- eating, activities, work, etc. Its HARD, but its also so, so empowering. I try to remember that the WORST is over, that we have found our path and now we just have to walk it. There is no sugar coating this process, its long and sometimes seems endless, BUT as the days become months, you will cry less and stop counting the days. Things become easier, the treatment becomes a way of life. Try as much as you can to let go of timelines. You will get well on your own timeframe. The body WILL respond, it just needs some tender love and care. And all of those activities you are missing now, they are just a few in a long, long lifetime of activities that you will be able to participate in. You are taking care of yourself in a way that will preserve you, that will teach your family and your children and that will ultimately change your life in an amazing way. These changes will last you and your loved ones a lifetime and they would have never come about if this wasn't happening to you. So while I know looking on the bright side is hard, please know it will get better, the pain will dissipate and this is TEMPORARY. Truly, it is.

You're emotions are partially a result of the imbalance of your body. As your physical health improves, so will yout mental health.  One more reason to keep on trucking.

You're emotions are partially a result of the imbalance of your body. As your physical health improves, so will yout mental health.  One more reason to keep on trucking.

Hey girl-
Sorry to hear you're bummed out, its easy to feel that way in the beginning.  Just so you know, my boyfriend and I split a bottle of san pellegrino (now seltzer) on our nightly dog walk.  Its obviously not the same, but its a sorta-replacement thats on your horizon!!

 
Pellegrino is not seltzer. :) two different things.  
To Deir, I don't remember what kind of symptoms you had, but didn't you get better with diet alone? That is the proof that you are on the right track.
I thought I had a mild condition, but it is progressively getting worse. I heard it from many women that their dis-ease was getting more serious over 1-2 years from onset symptoms. It may be the case that your IC would progress over time if you didn't do anything.
 

Hi, I'm the same at the moment. I started the protocol a couple of months ago and had been doing really well but seem to have gone backwards over the last few weeks despite being strict. I'm getting really frustrated and panicky about everything! It's nice to read these messages to keep the hope going!

 
It seems to be a common trend. May be it is natural progression of the dis-ease, who knows. I was doing great for a few months on diet list 1 and probiotics, which I did on my own. Then, I digressed. It all happened before I started treatment. I’ve been in treatment for two weeks now. I feel about the same.
 

Blondy- First we started with Pelligrino/Perrier--now I can tolerate seltzer.  Wooooo progress three years in.  Sorry if that was unclear.

 
About Deir's therapist... Imagining the worst got my attention last week. Although it is good to be realistic, I could not image worst case scenario. I actually did for a split second, and then my mind would turn to my eventual goal--to be well.  I felt pretty uncomfortable staying in the 'worst case scenario' mind mode for too long. I am not sure what method the therapist is using, but it is depressing.
 

To me the worst case senario would be to not see Matia and go the traditional route of tons of drugs and pumping my bladder full of chemicals. Since you are not doing that you can focus on a best case senario which is you will get better, the bad part is you just don't know how long it will take, but it will happen.

Hi Deir
I know just how you feel!  My children have just broken up for the summer holidays (they are 10, 7 and 2) and it's so hard.  I think the difficult thing is knowing that we should be enjoying this time with them, but it's so hard to do when you have overwhelming bladder symptoms.  I'm better this year than I was last year when I had such chronic fatigue that I could barely put one foot in front of the other - to this day I honestly don't know how I got through it and I remember comparing myself to everyone the whole time.  Once you get some energy back you will start to cope again, and even though my bladder's not great at the moment, I am having a lot of days when I can look at the children and feel joy in them again (especially the little one - and he's the hardest work!).  Having children and IC adds an extra dimension of guilt that you're not being the mother you would like to be and I struggle with this so much!  Have you got family nearby who can help you when you're on your own with the children?  Or a good understanding friend (I have loads of good friends, but only one was any use last year when I was really struggling!!)?  I also understand the hopelessness that you can sometimes feel - I've been like that over the last couple of weeks - but it's so important that you don't lose hope - it's the only thing that will keep you going.  Everytime I take the revolting concoction of herbs etc I try and say 'ha!' to whatever it is that's making me feel rubbish.  I picture starving the nasties everytime I crave chocolate or alchohol!  We are going to feel so amazing with this diet - we're going to look fantastic too!  And after a while our bladders will cease to be part of our lives........

Claire, I would like to talk whith you about fatigue. It seems that I am a rare minority here feeling exhausted all the time.
I'll email you sometime.

I think it's pretty common.  I've been in treatment for awhile and I'm still SUPER tired.  Ugh.  My mom slept for her whole first year!  There was a small stretch my first year in treatment where I had energy (I'm in the beginning of my 4th year).  Theoretically it should get better.

clairek, I can not imagine having 3 kids to look after... I ADMIRE YOU.
I have a two and a half year old (going through the terrible two's for SURE) and most days it is all I can do to just pull through. It is hard to take care  of her, my house and myself. I have struggled with fatigue off and on all through treatment, and sometimes it has been just awful to deal with.
I have to remind myself all the time that I am doing good things for my body, because somedays I walk around like this is all my fault, or I am not doing enough and THAT is why I do not feel better then I do already. But that kind of thinking only makes things much worse.

Did anyone get over fatigue? I think it is stress that is doing it to me. I have three kids, too, and I work. I think at least a half women here work. I don't know how people work with IC symptoms. It was hard with bathroom breaks, etc. it became extra hard with fatigue. 

Thanks to you all for your posts....all of you, whatever your situations.
I have a beautiful daughter of 13.  We have been on our own since she was 2 and we are very close, apart from the few months that my boyfriend lived with us.  We have always done so much together and so I have found it particularly hard since having IC that we have been robbed of this, simple things like doing our nails together, I can't stomach the smell of nail varnish or anything chemical for that matter, am super sensitive and I wouldn't dream of putting nail varnish on (too scared LOL) to going shopping, days out and trips to restaurants etc.  She has found this so incredibly hard as have I.  I often feel like a failure but I try to tell myself that when I could, I did all those things and she does have those memories, we talk about them sometimes so she can remember them too.  I have to tell myself that it isn't because I dont want to or that I cant be bothered to do things together but it is because i am chronically ill and that I shouldn't beat myself up about it. 
So all you mums out there lets tell ourselves that we are good mums, we are doing the best we can for our children in our current circumstances and when those circumstances change we will change what we can do.  It isn't easy I know, oh how I know, but as someone said to me today, we have to love ourselves and part of that is loving ourselves for being the best mums we can be in any given moment.  As hard as it for me to be kind to myself, to say good things about myself and to praise myself, I have always been a good mum to my daughter, I fought to keep her alive when she was born, I nursed her for six years until she was cured of her rare condition and I have always been there for her and tried to do my level best for her.  I know that you will all be able to say the same thing about your children, you are all good mums.
Lets hold on to that, especailly when we feel the sting of this disease robbing us of the special times we would love to be spending with our children.
My heart goes out to you all xx

I am 54, 3 kids- 24,21,16 and I was tired most of the time until the youngest hit 3 (could walk with out wanting to be carried and could climb into the car seat, and was potty trained and we could dump the diaper bag).  At the time I did not have IC and I cannot imagine how hard it must be for you younger ladies.  Raising kids, working, exercising, church activities all kept me busy and I made it through.  If you add IC tho, it is hard to get the rest you need.  I do think staying active is really important tho and I have always been an exercise person.  
Good idea for kids 2-6.  Obstacle courses.  Every night I would sit on the sofa and and make up obstacle courses, run around the chair, under the table, over the couch, jump over the pillows, blocks, carpet, or what ever.  Do a summer salt, touch your toes, spin in a circle, sit ups, anything,,,, make up exercises.  They loved it.  More Mommy more.  Make up lots of courses.  I also made them run around the car 5 times before getting in where ever we were. Kids love to move.   
The advantage of being older is I don't have to worry too much about cooking for the family which is good since it takes so much time, effort, learning to shop and do all the cooking for my self.  My family is older and they don't want most of my foods anyway.  They are amazed with how much discipline I have to eat this way and the whole family has been eating lots more soups and salads overall.  They have no choice if they want to eat stuff I cook.  
God Bless you young mothers and I pray you can help your kids to eat less sugar, and try to avoid going the doctor and getting antibiotics, pain pills, ADHD meds. antidepressants, pain meds, etc.  I wish I had known this stuff when I was younger.  I am a pharmacist and it kills me to dispense these drugs to children.  
Something I have learned from the Westin Price foundation (google it) and from other web sites is that fat is good.  Good fat...olive oil and butter and meat fat.  When the society started this low fat diet kick about 20 years ago,... depression soared.  Fat is needed to make serotonin and high serotonin levels help your gut and help decrease depression.  There is a great book called "Fats that Heal and Fats that Kill" by Udo Erasmus.  Kind of the bible for fat info if you are a research nerd.