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I was doing so well emotionally for months. Only having brief periods of fear, grumpiness but always able to pull out of it and live pretty darn positively.IN fact I was feeling like i was almost having a spiritual awakening and actually happier in many ways than I had ever been.But for the past few days- I have been a wreck. I think it is because I am at the year anniversary of starting treatment and I have a lot of unmet expectations which always gets me in trouble. I also think something is going on physiologically with this anxiety because Ican atually feel it in my solar plexus or something. I used to feel like this a lot especially last summer and I really get scared that I have kind of "lost it" I was totally mean to my kids this morning and I am just filled with fear and anxiety that I am never going to feel close to normal. I am "lucky" in that my IC is not as severe as many but it is so up and down. literally good 1 day, bad for 2, good for 3 bad for 4 etc. It is very difficult to maintain balance emotionally. One of my worst feelings is this hyperstimulated clitoral/vaginal feeling. I never think of it as pain and yet it makes me want to cry and jump out of my skin. I can't fall asleep and I feel so anxious. I have other symptoms that are less crazy-making but this is the one I have had for a few days. Matia has changed things for me multiple times.
I just got back from the store and I saw this mom of one of the kids in my son's class and she had clearly just left the gym/yoga class or something. I burst into tears because I have lost so much of my physical abilities and I am just flat out jealous and hateful towards "normal" people today.
Anyway- I guess I am just looking for hope that I can pull out of this emotional mess I am in. I just want to get back to my peaceful self. I was so calm really for months despite not really feeling much better physically. i felt like I was really coming to a good acceptance and peaceful place. I go to Al- anon and I am trying to "let go" and accept that I have this grief and fear and just gove the control over to God but it is tough today.:(
Anxiety
Hi Deir,
I'm sorry you're having a crappy day - I can relate - these last few months have been tough on me mentally. Have you let Dr. B know how bad it is? There are things that she can adjust to help.
I don't have much energy to be of much help - just know that I care and am hanging in there with you.
Take Care
I am so sorry,
Deir and Denise for your great difficulties. I am praying for you! I have had a very difficult week with my father taken by ambulance to the hospital for what they believe is a heart attack. My little daughter had a 103 temperature fluctuating to 102 for two days so that she couldn't sleep through the night without me by her, and my body was sooooo in pain the past two days, especially yesterday. To make matters worse, I hit my toe so hard on Saturday that it is all black and blue making it painful to walk, and our sweet golden retriever suffered a seizure. I can sure attest to feeling like I am going nuts sometimes. In a different way than you are describing, but nuts nevertheless. Yet in the back of my mind, way in the back, I know that even though this is such a difficult health journey sometimes, I would be far worse off if I wasn't here. So I thank God over and over that I am here, even when I am going nuts. :) I am so glad you are all here, too. I don't know what I would do without some of the kindest women I've never met sharing their heart and help.
I am so sorry,
Deir and Denise for your great difficulties. I am praying for you! I have had a very difficult week with my father taken by ambulance to the hospital for what they believe is a heart attack. My little daughter had a 103 temperature fluctuating to 102 for two days so that she couldn't sleep through the night without me by her, and my body was sooooo in pain the past two days, especially yesterday. To make matters worse, I hit my toe so hard on Saturday that it is all black and blue making it painful to walk, and our sweet golden retriever suffered a seizure. I can sure attest to feeling like I am going nuts sometimes. In a different way than you are describing, but nuts nevertheless. Yet in the back of my mind, way in the back, I know that even though this is such a difficult health journey sometimes, I would be far worse off if I wasn't here. So I thank God over and over that I am here, even when I am going nuts. :) I am so glad you are all here, too. I don't know what I would do without some of the kindest women I've never met sharing their heart and help.
Mrs a- when it rains it
Mrs a- when it rains it pours, huh!!!
Thanks so much for your encouragement
Denise- Not surpriswed you
Denise- Not surpriswed you chimed in!! a big (((((hug)))) because really I think anxiety is just about the worst thing I have ever felt. Hang in there and I will try to as well.
Hi Denise- thought I had
Hi Denise- thought I had posted to you! Hmmm..
Anyway- I am thinking of you and holding you in my heart because I think anxiety is the worst feeling I have ever had. Hang in there and i will too.
((((hug))))
yep
I give myself "the woody allen workout". Literally, I get so anxious and nervous that my heart races and my blood pressure goes up. This was tested today as I went to my bi annual ear doctor appointment (serious ear surgeries as a child need to be checked on). The nurse was like uh..your heart rate is 110 bpm and your blood pressure is high. (this is not usually whats up, as im 28).
I would just focus on the fact that you have good days. That's great.
However, it is easy to just freak out and go into a tailspin for sure.
Gee, and I thought it was
Gee, and I thought it was just me. I have been so negative of late and as I approach three years of treatment next week, I am especially negative and discouraged, despite much progress overall really. I completely know what you mean about seeing other "normal" people and feeling hateful. I get really depressed seeing people walking down the street in my beach-y town eating ice cream cones without a care in the world, on vacation with their perfect little families. It literally makes me teary. Will i ever have that life? Why do these people have normal bladders and i am suffering every day despite all my efforts to get well, i ask myself.
I also go to Alanon and find it has been somewhat helpful but still have difficult days where it just overcomes me. I feel so isolated mostly. I am/was such a fun loving, social butterfly, outgoing woman, now i do not want to be my usual social self so that I don 't have to deal with explaining my dietary restrictions to other people. God, it gets so tiring explaining it all. I almost don't want my friends to know I am still eating ten things after all this time and still not cured for fear they will reinforce all my self inflicted doubts.
I got invited sailing yesterday with some new friends who do not know my issues and i had so much anxiety about the food (not to mention how I would pee if I had to on the boat). I brought a bunch of grilled veggies and a salad but they brought fried chicken which i felt somewhat obligated to eat. I peeled off the skin and ate the meat. They know i am a health coach so i just chocked it up to that. It all went fine but i was severely anxious. I am sick of putting my life on hold for this illness so i wanted to go sailing to make some new friends and help my emotional self feel like i can have a life.
Anyway, I know how you are feeling and some days are way better than others. I've just become so used to living this way I hadn't thought to post about it, so glad you did.
"reinforce self inflicted
"reinforce self inflicted doubt" That is so hard for me too.
Can you try to look at the sailing trip as a success? Because you did go despite this illness. On my good mental days (which were many) that is what I try to do. reframe it.
I know that jealousy you talk of but you know a funny thing? My family would probably look like that "perfect little family" you mention. I wouldn't be eating ice cream but other than that, you'd think I was fine on the outside. Then I'd look at you and say, "look at the beautiful successful pilot- she's living such an interesting life!" I felt some jelousy towrds my neighbor's sister recently and then a week later, it comes out that she is pretty sure she has IC!!!! I never would have known from looking at her.
I am sure it must be so difficult to still have so many challenges after 3 years. (((((((hug))))))) Thanks for sharing!
ha ha Woody Allen! That is me
ha ha Woody Allen! That is me too. Thanks- you made me smile
Hello Ladies! You are
Hello Ladies!
You are definitely not alone when it comes to thinking you are going nuts! I can look back to two years ago before I knew what was going on with my body, but I was so anxious and felt so alone! I was living away from home finishing up my doctorate degree and I thought I was going to have to admit myself into a mental institution. (not really, but felt like I could not control my anxiety, feeling like my heart was going to jump out of my chest and passing out very easily) I am so thankful my anxiety is better under control since starting this treatment. My emotions still get the best of me. It was over mothers day weekend we were at church, and they had a special prayer for all the mothers and the homily was all about having faith even when you feel God is not listening. The whole service I was trying to hold back my tears, but I just couldn't. By the end I was bawling so hard I had to excuse myself. I felt so embarassed. I can't help to feel so jealous sometimes with wanting to start a family, and like all of us on this site feel healthy enough to do these "normal" things in life, and not have to worry about how I will feel the next day, or what my emotional state will be like. Most of the time I'm either crying about one thing or another, or wanting to pull my hair out in attempt to not freak out at my husband for something silly! Hang in there we will get past all these moments where we feel like we are going crazy! I have faith! Hugs!
Thanks you so much. I have
Thanks you so much. I have sat in church with tears streaming down my face countless times in the lst year. The worst part is that I am a professinal singer and I sing at FUNERALS!!!! All the hyms are so meaningful when you are suffering. "In the time of trouble, he will hide me" "Be not afraid, I go before you always..." etc etc. I have been close to tears so many times and saying to myself, "you're getting paid, you're getting paid" LOL
Yes, those songs would be
Yes, those songs would be very difficult to sing in time of suffering! If I see anyone else crying that is enough to set me off. All the power to you for being able to hold it together. Haha! Great strategy!:)
Hi Deir, I hope you are
Hi Deir, I hope you are feeling better today. Seems like we've all been having a hard time over one thing or another. I have been having insomnia again and it is awful. I wanted to write something yesterday but I was just so tired and sad I could only look at the screen. Last night I tried to fall asleep for over an hour then finally gave in and took a half an Ambien... I am mad at myself but I HAD to get some sleep, I have to be at work today at 8 AM. So I just wanted to say I hear you even though I can't really add anything, all I can say is "this too shall pass". Hope today is a better day, hang in there!
Absolutely right- This too
Absolutely right- This too shall pass!!!
Thanks so much everyone! I
Thanks so much everyone! I guess I am not alone.
I feel better today mentally thank God and I would like to write a long reply but I don't have time. i will later.
Thinking of you all.
xoxo
Hi Deir and Everyone, I
Hi Deir and Everyone,
I empathize with all of you. Your posts made me cry, though I have been doing that for the last few days anyway. I think it takes an amazing amount of stamina to deal with a constant chronic illness and the big questions that it raises. Lately I have been doing the whole "how will anyone ever love me when I am so broken, and I will never be able to have a family, and how will I support myself if I can't get rid of this, etc, etc," mind spin. It is so hard. Even in the midst of slow improvements, I just feel so short changed, like I have lost the last 3 years of my life to this illness while everyone around me has been getting married, moving forward in the their careers and starting families. And I left everything that I had to move back to my home town so my mom could help me.
Deir, I am in the same boat you are with the hyperstimulated clitoral/vaginal feeling. It's a real drag, but I keep telling myself it is better than a torturous burning feeling! So I guess it's all relative. Also, I noticed your posts over the last few weeks have such a different tone of - well- peacefulness about them, or an acceptance about them that made me really happy that you seemed more at ease. I'm sure that now you have accessed that a little that you'll be able to get it back again. Don't beat yourself up if you go in and out of feeling afraid- how could you not feel afraid sometimes? There are so many unknowns and just being kind to ourselves is all we can do sometimes.
I find it comforting to know that I am not alone in this. So thank you all of you for your thoughtful comments on this challenging path.
Thanks Claire- I am sorry you
Thanks Claire-
I am sorry you also have the hyperstimulated thing. it is so hard to explainto people that "no a pain pill will not help this" I have to have hope that I can access that peacefullness that I had
You really have had a lot of life challenges. I am so sorry. Hang on to those improvements. They will become greater. I know it.
Going Nuts Postings...
Hi Ladies:
There must be something in the air. I had an anxiety dream that kept me up afterwards and this am, I felt somber to say the least. Fortunately, I had a 9 am face to face with Dr. B and she was so kind to me, it really buoyed me up.
I told her that I was very sad, grieving about past health choices and struggling with the idea that I have a disease. Her words were- think of it as an imbalance not a disease and know that your body can come into balance and your brain can get sharper, too. (this because I was saying that my brain is givng me great trouble as I try to go back to school very part time...)
SHe is just so unerringly kind!
Anyway Dear Deir and others, it says in the dissertation that as we get healthier the anxiety will get better. So I am holding on to that.
Love to all.
Bonnie
Right before my period
Right before my period always I feel like I am going to lose it! My emotions, my cravings, my bladder and my brain are just going nuts! I always tell myself just give a week...you know it is coming and then as soon as the period starts I am good to go. No more cravings, and less brain farts, and emotions. Everyday is an emotional roller coaster with this disease. It is so hard! Nothing seems easy and the end can seem so far away. For the first time in months I feel like I am on track and it is going to work and I am getting better. Motivation and positive thinking are helping me so much. The less stress the less I hurt, the more positive the happier and healthier I feel. It is starting to become a lifestyle and who I am and I am beginning to embrace it and when people feel bad for me I just say. Oh I am happy!!! In the end of all of this we are all going to be so freaking healthy compared to the rest of the population. Everyone will get there...everyone. We are all so different..and our environments and what caused IC are so different that we cannot compare to one another. All I know is that when I read of people making progress I am so psyched for them! YES!! We are all going to make it..
Thank you so much Portia
I needed a cheerleader today - helping me rise from the funk.
Take Care
Thanks Portia. I am so glad
Thanks Portia. I am so glad you are starting to feel more positive and making progress. The scary part for me right now is that I was also feeling like i was really happy and grateful despite having still so many ups and downs. The past few days have been scary because I feel like I lost all that positive progress emotionally.
One day at a time.
The grief is real and needs
The grief is real and needs to be felt for sure. I am glad you felt a little better after talking to Matis. I wish I lived in LA!
Deir...I feel like after
Deir...I feel like after reading your posts throughout the months you have made a lot of progress from the beginning. Last night I tried to eat something from stage two and still had a reaction but it was not nearly as bad as normal and I feel like if I had only had a tiny tiny bit it would have helped. Just the little tiny steps make me see an end to this. Patience is something I need more of during this process. I have realized without patience it is impossible. You are so motivated and disciplined and are inspirational to everyone. Keep going!!
Thanks Portia- I really
Thanks Portia- I really haven't made any noticeable physical progress. Believe me I comb my journals looking for it! I have always been very up and down.But I have made a lot of emotional and spiritual progress and it was just scary to feel like I had lost that these past few days. But my husband said- "You're not starting from zero" That helped a lot. Also had an appointment with Dr B and she assured me that even though symptomatically I wasn't improved yet, there was healing going on underneath. We just need to find the right thing to "push out the sludge"
I am sorry you are still on list 1- geez- that is hard but you are also very motivated and disciplined and you are going to get better.
It must be so difficult being a nurse and seeing what you see plus working through this pain.
Patience, yes- THAT is what I pray for!!!
Thoughts
When I am feeling good, I try not to read these sites. Ocasionally, I will get scared or curious and read them, but it never does me any good. If you are struggling mentally, I'm going to suggest that you look up Abigail Stiedly and buy her tapes. They have helped me tremendously. Also, the pain, I believe, is caused by IBS, and it does affect your clitoris. My IBS pain has subsided lately, but I still have some symptoms that seem minor compared to what I have been through, but enough to drive me nuts that affect that area. But when the IBS went away, that got better. IBS is a mind body illness in the same way that much of IC is, if not all. The pain is real, but it is caused and intensified by your emotions. So far, this is what I've discovered. But by Abigail's tapes and use them in conjunction with what you are doing here. They will help you, I believe.
My IC was caused by family
My IC was caused by family weakness,the pill and antibiotics and then an elimination diet heavy on anti- fungals that pushed me over the edge. The stress/anxiety has only come after I got sick. I do not have IBS. My sister also has IC and we are about as different as they come emotionally. We have other things in common though! (big boobs, a nice singing voice, and IC)
I don't read other boards either, just this one since the other women here are also patients and can understand what i am going through.
I am so glad you have found something that helps you. I know you have suffered a lot.