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hi everyone,
how do you all deal with the emotional pain that comes along with being ill all the time? I'm having a very hard time lately, I don't know who to turn to with my emotions, it's so difficult to explain to others what you are going through and mostly I just don't even want to explain how I feel. I also have good days but even on those days I feel very sad. Sad because I don't know how long this will take, sad because of all the pain, sad because all my friends are getting pregnant, having babies and me and my boyfriend still have to wait for a very long time (after we have been trying to get pregnant for 2.5 years), sad because many people give such insensitive remarks, sad because I just want my life back...
Sorry I don't want to be so negative but sometimes I don't know how to deal with all this.
Vicky
dealing with emotions
This is a great topic. IC is enormously painful- both physically and mentally and emotionally. It is sooo draining in many regards and so very heavy. It's an invisble chronic condition and I feel that its difficult and rather intimate to discuss with the curious strangers that demand a casual explanation to my foreign eating or healthy habits. For those of us holding down jobs or more intensly raising children and working fulltime and raising kids simulataneously and treating IC its just alot to deal with. IC for me at least has had a very very real and intense depressive quality. Not only is it emotionally painful and frustrating to kind of take a time out from the goals and dreams you wish you had the energy and ability to undertake but it just feels so scary not knowing your future- when to expect recovery or what is happening in your body day to day. So yes. GOd its hard. Its aleinating.Top the guilt you feel for not being a "more there" for your partner or family o top the dissapointment and strange mixture of self pity or anger you feel for being sick when others are thriving and raising children or traveling the world or whatever it is you feel robbed of- as if those external sad things were not enough a very real and physical depression is going on from all the toxcity in your body. so some of it is the bacteria and yeast that is overall kind of making you feel like crud warmed over on an emotional level and some of it is kind of due to the external thingsthat we are bummed about. I think sometimes the expectations/judgements I put on myself have been enormous and ridiculous. I put alot of pressure on myself to get well faster and the truth is its just going to happen in its own time. I came to some pretty freeing realizations and allowed myself to at times just admit that bad days are bad days and they happen whether I have IC or not. So what do you do to cope and deal with emotional pain that comes from being sick all the time? okay. It is my understanding in my own case- not saying this is true for anyone else... but I think that all illness has an emotional aspect and root. When you are out of balence physically- you treat and balence it physically and also treat and balence it emotionally too. I noticed on my good phyiscal days that I felt very very bad emotionally as though because my mind was not focuised on my more imediate physical pain it shifted to the heart emotional pain. As I was going through treatment I felt like alll my "stuff" was getting dredged up along with the yeast. I was ready to look at it. I was ready to deal with it. I had so much pain and baggage from the past it was not even funny! ooooh girl I had stuff I thought I had gotten over but noooooo way. So in this way IC forced me to look at my baggage and issues and with the help of a therapist who also did healing energy work and taught me special exerciseswith EFT tapping sequences-and we did something called Psyche K another energy psychology was really powerful. These things taught me how to let this stuff go and stay on a more positive frame of mind. I have some tools to help me deal with the bad days which are nothing like what I was dealing with before. I was able to release tons of emotional pain and feel better about my situation. Do I have crappy emotional days still? Yes. I do but they are not as severe and not as often and I have the tools to transform them if I wish! I think its okay to have bad day and be honest and upset about it but I also know that I have learned specific coping skills that help me out of those places. I'm still cleansing so I'm still having days where I don't feel so great. Sometimes just allowing myself to accept help when I need it and to allow myself to kind of sit with and not resist the pain. I don't wallow in it or glorify it or encourage it or beat myself up about it. I remember that many folks have gone through exactly where I am- I take hope inspiration and strength from the fact that they too recovered and are healthy again. I have the support of folks on ICAMA and in my husband who allow me to be myself and loves me unnconditionally. I cut out any person from my life who was draining or insensitive. I found the physical depression got better with time and sometimes fluctuated with the herb combos so maybe Matia could add something to help with your moods? keep in mind hormones out of wack is some serious stuff to deal with! I try to on regular basis because I notice such a postive difference when I do: practice special healing exercises. these are also very spiritual for me but can be done on a purely secular level for anyone of any religion or tradition. my prescription is thus: create a little sacred space in my house - just for me. I have fancy pillows to sit on and meditate upon but it oculd be a pretty favorite comfy chair-in my space I have a little table with art on it and pictures of my loved ones and pretty places I love to visit and an offering of fresh flowers and fruit that I can eat ( which I share with others throughout the week). some people could have pics like a mandala for meditation/prayer or icons or symbols or books that are symbolic of thier faith. I love candles-( non toxic non scented soy or beeswax candle) so I light a glass votive. safety first! I have incence that is very low smoke - japanese brand and I burn it but this could be bad for some folks who are sensitive to smells/smoke. the essential oil is lavender and that doesn't bother me... then I do healing mantra power visualization. others can do chosen prayer and utilize their imagination for visualization of healing energy pouring down upon them. there is an elaborate post I I wrote in the spiritual forum sectionof ICAMA titled Mantra Powered Visualization with details about it... then I do EFT affirmations that match up to my current goals ie. " I am so grateful... my body systems and organs are healthy all my tissues are healed and I feel so good." always positive statements. I do that along with some light tapping. (youtube EFT) Now Matia told me it was okay for me to do the tapping as long as it didn't cause me any flares or increases in symptoms. I know she might not be down with EFT at this point this is because some folks might get too intense of a reaction to energy healing stuff like tapping because it does tap on certain acupuncture points and it maybe too stimulating/cleansing for some people. so always just let Matia know if you are curious about seeking additional treatments like energy body work/energy physhcology/ hypnosis cause it can be really complimentary and beneficial when done in the right way responsibly but its good to communicate all these things with Matia. Even if you just get some traditional counseling support with a counselor alot of them are social workers these days and more affordable than an analyst. I wasn't ready for anything other than light yoga for a long time. I did the healing visualizations and chanting with no ill side effects the whole time I have been in treatement- I found it to be helpful. getting professional support is amazing and wonderful and really nourishing. I learned alot and improved my relationships with others and my family! As far as explaining to others- just don't if you don't feel up to it. find people who understand what you are going through and discuss it with them. you are safe and welcome to vent here whenever. It's a private matter and you don't have to discuss it if you don't want to. Unless you feel like educating people about it which has surprised me sometimes in that there are people out there that actually do "get it" never even having heard of IC but understanding chronic illness.- Celiac/lyme disease/fibro/ dibetes etc etc. Its become more in the public conciousness which is sad because it means more people are sick than ever. I've even helped others get help for thier IBS and their beginning IC status. you could always Say- "I have a chronic illness- its a painful condition with lots of symtoms but I am in treatment. I have good days and bad days but I hope to be well again one day. that's why I eat so good and take such good care of myself." I know its hard to wait! But you are going to feel so good and feel actually younger. toss age out of the window. My grandmother had my father a healthy baby boy when she was 40 years old in 1946! your energy will return and your reproductive system will be efficient and optimum- when that's the case it won't matter how long you've tried or waited to get pregnant. When your body is healthy is does what its supposed to do longer. when you are tired and sad- take refuge and find that sacred place of nourishment to sustain you. Just ask aloud with the universe as your witness for guidance and refuge and it will come. much healing wishes and light to you and everyone out there reading and waiting. yours Mary
emotions
mary- you always come out with amazing things to say- thank you! Vicky- When I first started treatment, I was so bitter and angry, I couldn't get over it and it consumed me. I tried to breathe and think good thoughts but struggled continuously just wishing I could have my life back and hang out with my friends, be active... be normal. But now I'm realizing there isn't a "normal" and I don't need to be able to do certain things to live a full life. Not going to lie, I am going to miss sitting at a bar with friends and ordering my classic fav, a lemon drop. At 23 I think I will be left out of a lot of social nightlife outings. Sadly, going out for drinks is at the center of my age group's social life, but isn't that kind of sad in itself? Shouldn't there be other things to do? I'd like to hope so. This has brought me to tears a lot in the past month, just thinking about a year ago and how much more I saw my friends, how happy I was. The lifestyle change/pain can be very isolating. The process is slow, but in the grand scheme of life it's only a small piece- there are many fabulous years ahead! Being used to something (a way of life) for so long you are sorta programmed to it, you know? When you have to rework all aspects of your life you have to change all that programming, and in the midst of all the physical stuff it's extremely taxing and sometimes seems impossible. But don't fret, as you improve it will come. I think I still have more challenging days in this sense than good ones, but it's improving. I'm trying to find other things I used to love and do all the time- like painting and drawing, getting into yoga, hiking, etc. My hikes have gotten longer and longer as I've improved, not having to worry about having to pee all the time. And ultimately, being active improves all the emotional stress, so definitely find some way to get outside, even if just a short walk. Try and find at least one thing you really love that you can make work for the way you're feeling now. Maybe it's just reading or like Mary said, having your own "space" that is calming and generates good vibes. Getting through this is really tough, there's just no way around it. Just let yourself be upset and don't get down because of it. I think we all have a right to be angry, sad, frustrated, etc. I used to hide my tears, I'd never let anyone see me cry, but now I just let it go because I have to! Everyone needs to let it out as we heal, so allow yourself this and don't apologize for it! (I do that a lot...but why?) A lot of others don't realize just how many ways you are aff
ected and just how much will-power, mental/phsyical energy, and patience this process takes. Everyone around you should be extremely proud and let you know it! My mom said it to me for the first time on the phone last week, acknowledged my struggles and told me she was proud of me, and at that moment I realized that was one thing I was truly missing. Most of the time we don't get that kind of support, someone just saying they're proud, but you should hear it every day! Know that you deserve to hear it every day :)
keep on truckin'whitney
Thanks
Mary and Whitney,Thank you so much, your answers really mean a lot to me and you both give me good advice and support. Today I brought a book from the library about mindfulness, I'm interested to learn more about it. You are right that I need to have my own space, I often don't know how to get rid of my emotions but I will try to find something that gives me support. I did yoga some time ago, but on some days it's too painful so I haven't tried it again. I think the healing process is harder for me than I expected and I think a lot of my physical pain is caused by die-off. Sometimes it's difficult to know what is causing the pain and I don't know how long die-off symptoms can continue but up to now my body doesn't seem to calm down. I think it's the uncertainty that also causes a lot of emotional pain, not knowing if you will ever get better, when you will get better,... Whitney, that's so nice of your mom to tell you that she is proud of you and she's right, you are all so patient and committed to the treatment, it's a struggle but once we are better it will all be worth it.
Vicky
Early on in my treatment I
Early on in my treatment I remember Matia wisely suggesting that oftentimes in these types of extreme circumstances (both this illness and the treatment qualify, even if only in terms of how others react), one may need to turn inward more than anything, investigate and cultivate one's inner resources. At the time that was hard to hear b/c I wanted so badly to have external support, someone to cry to, someone to vent to, someone to hug me. I'd been doing everything for myself, managing my own care, etc. - in the least I didn't want to have to support myself too! It was also hard to hear b/c aren't your closest friends/family the exact people who are supposed to be there for you in these worst of times? -- If not them then who? But those around me couldn't provide it / didn't know how.
Then I started doing some intense inner work - through reading, journaling and a wise spiritual teacher/therapist - and I can tell you it's helped a lot. I was able to learn...
... how I could be soothing to myself (ex- holding myself, stroking my arm like you would to a child- strange as it sounds it works)
... how I could make "play dates with me" to give me a break from the pressure and do silly things or things I like but usually never do or at least not by myself like art or museum or hiking or going to a movie
... how I needed to not worry/feel guilty about going negative and just let the anger out sometimes through screaming/hitting pillows/crying
... how I could set stronger boundaries & speak up for myself so I didn't owe anyone an explanation about the disease or treatment or having to give a report of how I feel if I don't want to, etc.
... how I had to better honor my own needs, like if something is too much for me to consider bowing out no matter what I think is the "right thing to do" or if I think I should just "sack it up" out of duty, like realizing I probably should've left the umpteenth baby shower this summer b/c it felt torturous - I was overwhelmed with sadness and resentment as the entire conversations were about baby stuff and I of course had nothing to contribute, felt ridiculous and totally shut out and left behind.
.... how I could cultivate my strength to get through this on my own, and see how much power I have (if I don't give it all away). To see that even if my marriage doesn't withstand this, I may not want to but I CAN do this on my own. So many things I thought "I'd never be able to...." aren't really the case, I've sold myself way short.
It was/is a hard pill to swallow, b/c it seems unfair that not only must I go through all this but then I've got to also be my own support?! But I continue to be happily surprised at how, in addition to getting stronger and being able to "be there for myself," it's manifesting many other positive changes in my life. Of course, there are still days I don't want to do it for myself! But then I realize I have further work to do on acceptance of what is.
Dear IC Hope - Turning inward
Hello,
Your post was done ages ago - I have probably read through most of this site to get through the day. (OK, it's also slow at work) I have just gotten to this point of self-awareness that you've so well described - Thank you for the affirmation.
Your post, IC-Hope, rings
Your post, IC-Hope, rings true to what I've been through as well. To be honest with you ladies, IC has not only made me realise that I needed to take care of my body, but I specially realised that I had to learn how to take care of myself emotionally. I had read so many "self-help" books in the past, but although I "knew" so much, I see now that all this knowledge only started being usefull once I learned how to apply it in my everyday life. As much as I thought that I could depend on myself and that I would never need therapy, I found my hero in my spiritual therapist. She is so thouroughly trained, knowledgable, unjugemental, compassionate, wise, etc, etc, and she is the one who finally tought me what emotions actually are. Emotions are meant to be felt. I often felt overwhelmed by anxiety, fear, sadness, anger, irritation, stress, during my life and during the first year of treatment. My way of dealing with this was to pretend it wasn't happening by switching to positive thinking, spending hours on end absorbed in the computer, fighting the feeling by reasoning myself or going to bed. I learned to go deep into my emotion without judging it or myself, without thinking "I should feel this, I should think this, I should be this instead", without thinking about why I feel this way, withought trying to "do" anything. I learned how to feel the physical feeling related to the emotion and go deep within that as well. At the beginning, I was very sceptical about doing this at all, because I was afraid to fall into a big depression, having suffered from deep depression often in the past. This is where my therapist helped me the most while I was learning how to pull myself through this and come out stronger. It helps me to know that whatever emotions I am dealing with, they are not "who I am". That if I feel like the biggest looser in the world, to know deep down, that I am not a looser (no one is a looser), I just feel like one. There is a difference, a slight line not to cross to keep one's sanity! Sometimes, it helps to get the emotions out physically, as with anger. I dedicated a few weeks of my time to allow anger to rise every time I felt it and to express it (alone, lol!) by beating pillows, and screaming! Yes, this might sound silly to some of you, but believe me, repressing emotions has more to do with IC than I initially believed as well!!Now, I am free of my overwhelming emotions. I don't consider myself any less sensitive though. Quite to the contrary. These overwhelming emotions were the same ones coming back again and again for years, because I would not let them simply be. This process is like an onion though, there are many, many layers. I believe that I will be faced with many emotional challenges during my life, but for the first time, I feel fully equipped to embrace them and learn from them. And in that way, it is a beautiful feeling to know that I can depend 100% on myself. Also, it is really nice to live my life without all these thoughts spinning in my mind constantly, yup it's gotten pretty peaceful in my head :-)