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I have been having a bit of a pity party recently and am wondering how other people experience the humility that comes with IC and this treatment. Part of it is that I just passed my 3 year mark of being hit with IC.
To be frank, I just feel like such a loser! I remember the week before IC hit me, I was saying to a friend that I was looking forward to having kids in a couple of years and planning some great things with my work, etc. All of that went out the window. Friends have moved on with their careers and partnerships and families, and it just feels so hard to be sidelined watching time pass. I know this isn't really the case, and everyone is on a different path, but can you all relate to this feeling?
As others of you have expressed, I worry that my chance to have children will pass me by, in part because of IC, but also because of my financial insecurity after being sick for so long and how I lack a stable life situation.
Physically, my bladder is far better than it was, but I still struggle with low energy daily. I also have this lovely new skin thing where my entire back and my lower belly are COVERED in these scaly red dots. I am sick of feeling like a leper and spend too much time scrutinizing my physical appearance overall.
All this worrying is totally counterproductive to healing, and I meditate and do sequential relaxations, etc. to try to relieve it. But these thoughts continue to get the better of me! I guess I'm writing this to get it off my chest and seek some cameraderie in this frustration. How do others of you manage these emotional "side effects" that accompany the IC lifestyle?
I too feel like life is
I too feel like life is passing me by! I have many fears that I will never have the opportunity to start a family! Like you say it is so hard to be stuck on the sidelines cheering on our friends and family as they go on there marry way! Hard not get jealous and depressed over what I physically can not have know and maybe never!
I question daily, how did I get to this point? I wish I could go back 20 plus years and know that it was not normal to have pain after I ate! Dr. B is great though reassuring that this will heal, but how can you not let doubt creap in. I am not saying I have not seen improvements, but I guess I was hoping it would be happening more quickly than it has. No way am I going to give up! This has to work, there is no other option for me!
I have always been an athlete, so giving up physical activity do to pain, and yes, the constant struggle of low energy has not helped! This is how I escaped from my daily stress. I am trying ease back into the exercise, but my competitive spirit gets in the way, and I end up over doing it, and exacerbates my symptoms. I continue to work, which yes causes stress, but it helps keep my mind occupied.
Sorry, I guess I don't really have any great suggestions for coping, but wanted to let you know you are not alone in your doubts and fears! Hugs! We will all make it through this journey much stronger indivuals! Thinking of you!
I think it is human not to be
I think it is human not to be positive all of the time! The fact that you have committed to this treatment -& seeing it through means you are strong & resilient. I have been blessed with 3 children a wonderful husband & a mother & fater who have turned their world upside down to help raise my children & take care of me. Still it is monumental at times to know everyone around you is moving on with their lives and enjoying it. I keep telling myself that my real friends will come around when I am healed. They check up but sometimes people don't know what to do. This is all so unfair but we have been given the gift of a light at the end of the tunnel. We will be rewarded in the end:) I hope for everyone that has the desire to have children has that dream come true. They are the force that pushes me everyday. For those of you who believe in a higher power, prayer is powerful. The future is bright! Keep saying that!!!
Amy
For me, it has been hard to
For me, it has been hard to accept that my body isn't "good" in many ways. I struggle with my identitiy as a dancer- am I still a choreographer if I can't dance? I wonder what will happen to my performing career as more time goes by and I fade from the minds of people in my city.
The sexual issues were a really big one for me. Even the darn hair dye issue is tough. i am sorry but there just isn't a really great natural alternative if you are already dark blonde and want some highlights.Plus I am starting to get some grays.
I feel for those of you who worry about starting families. That is a huge burden to bear.
I do best when I don't think "globally," I really have to take it one day at a time.
I agree about higher power. This experience has brought me more humility as you said- but not in the way of humiliation- in the sense of realizing how much control I really have- NONE! I have grown so much in my spiritual life and I do depend on my higher power to help through the really dark days.
Sometimes God shows up through the voices on this forum.
Hang in there ladies- YOU ARE STRONG!!!!
Camaraderie here too!
Hi
I read the forum often but just had to respond and Reach out as this really struck a chord with me too. That feeling of life passing you by. Its so sad and I feel that so deeply too. I am at an age where I don't think I will have my own children now and that is a great sadness to me. I ve been ill now for four years and have sen friends start families, build careers, start their own companies etc just as you say. I totally relate to that feeling of being sidelined and somewhat forgotten about at times I can't work at the moment and just as Deir describes with her dance and choreography career ( I'm an actor) - I have lost contacts and all the socialising was a way of getting to meet people and getting auditions etc. it's all gone and I have faded from their minds also Deir!!! Not a good feeling. What you have described particularly resonates with me at the moment as I am four years unwell and that seemed a long long time with this pain as well as the emotional , social and financial impact. I am also struggling so so much in treatment so even thinking about ' joining back in' with life seems a million miles away still. I ve had to give up working and just about everything I loved through the severity of my pain and fatigue. Self image has also been an issue for me - hair loss quite bad, and I think I must be the only one - but I ve put on loads of weight on the diet and this gets me down a lot. :( as an actor , I relied on my appearance a lot , so if you hear of any jobs for fat balding actresses , do let me know!!
You ask about coping. . So to end on a more positive note , I try to cope with mindfulness and meditation practice which keeps me from wandering too far into the future too often. It also has taught me some strategies for coping with my overwhelming and changing emotions and slowly helps me build my own inner strength that I need to get through this. I read and investigate as much as I can around spirituality , chronic illness, energy medicine etc. I truly believe that the experiences I have had will lead me to better health - physically and emotionally, more compassion for others and a desire to help anyone else who is still in the darkness. I feel I will have an awareness of and gratitude for life that I could never have had before IC. The unknown future scares me Of course because my whole life has changed but I believe that I will never return to illness because of the new found awareness and the care for my health that mAtia teaches . All if these things help me deal with it and I hope that something I ve mentioned will help you too just a little. I think for me some emotional support has been valuable and needed and this has helped me clear up stuff that I needed to shift in order to keep journeying along. I think it was Nadia who said that having a catalogue of comedy films/ clips/ programmes to keep laughing was helpful!!! Things to make you feel good and smile. I read today that 5 minutes of positive visualisation - loving , caring thoughts boosts the immune system for several hours. I try to see my future and my healthy body every day in my mind. I try to do one Blissfull thing each day to help my body heal - meditate Walk, listen to music, read , visualise, etc.
I couldn't believe it when I read your post - it was like reading my own thoughts just at the moment. That's why we are so lucky to have this forum. I loved Tinkerbell s comment ' our day to shine is not so far away'!!! We will shine so brightly with strength and kindness and health!!!
Xx
Big ((((hug))) for you! I am
Big ((((hug))) for you! I am an actor also. Just before I got pregnant with my daughter I was in the best show and it was such a wonderful experience. I hold on to the memory of that and how alive and healthy I felt. I just have to hope that I will be back there again and so will you. another ((((((hug))))))
Your post completely
Your post completely resonates with me as I am 4 years into IC, 38 yrs old, and, while my career is intact, I did take some time off and I still contemplate often whether I need to give it up to heal completely. I feel overwhelmed with sadness and grief at watching life pass me by, but I try to remind myself that this is my life, now, the present moment is so important, and someday I will look back on this difficult time with gratitude and love for who I became because of it. I struggle so much with the thought of never having a child, do I actually want one, is it even possible, or am I wanting one only because I seemingly can't have one right now, and maybe ever? It's very confusing.
To cope, I do a lot of walking and yoga, some meditation and mindfulness, and lots of work with my therapist. I am also in various 12-step programs like Alanon, Coda and ACOA. I have found these to be so helpful. The serenity prayer is very powerful.
Boy, it really stinks to watch your friends leading normal, happy, family fun-filled lives and not feel left out or envious in some way. I feel very isolated at times because of IC and the strict lifestyle. But, I try to turn it around and remind myself that everyone has their stuff and the day will come where I am healthy and happy and they may be struggling with something much worse where they may not have the opportunity like I had to heal their bodies on such a deep level.
You are not alone and thank you for posting this!
Just a quick late evening
Just a quick late evening note to everyone who posted on here today- you are all in my thoughts and in my heart tonight. I think we will all come through this experience with more grace, compassion, strength and kindness than we ever imagined that we were capable of. I often think of how Matia took her experience with IC and turned it into a chance to help so many other people get their lives back. I think we'll all relish and appreciate our health and our blessings so much more having been through this experience.
In some ways reading this thread was rather dark and sad for me, just digesting everyone else's struggles really touched me. But I am grateful to have this "community" and be able to share with others who understand. So, thanks for sharing.
As a positive aside, I walked to the store tonight and it was like the whole world was humming with summer life and I noticed the moss on the trees and the smell of the air and all these amazing things that surround me every day and felt so in awe of the natural world. It's great to stop and be able to notice all the wonderful things we CAN experience even in a difficult time.
time bucket
Hey guys-
This is how I think about it. I got IC at 23--I'm now 28, and it took me a long time to actually follow the treatment plan properly. However, I try not to feel bad about anything passing me by because of my conceptualization of time. Check it. So everyone gets a time continuum that they are alive...and everyone eventually gets sick....its just a matter of when. So some of us, are sacrificing time in our 20s or 30s, that we will get back in our 50s and 60s when other people are sick. Moreover, this is an investment. We will feel better longer, so ultimately, we will be better off because if you add up everyone's sick time and compare it to ours, we will have less sick time and higher quality "good time" (I mean seriously, I know its not just me, how many of your friends have nasty vagina problems/bowel issues that they think are "normal"??). So don't worry ladies!! We will age so much better.
I think you made some really
I think you made some really good points! I was sitting at my son's baseball game in may- it was an absoluely perfect Spring evening and i happened to be having a good day IC wise so it was a nice little evening for me. Anyway- the 3 other moms there were DYING with their seasonal allergies. the one was saying she can't go outside all Spring without multiple drugs and even that didn't always help. Of course, they were sucking down diet coke etc. ANyway- it really made me think- "Maybe I'm NOT the sick one!"
Also- I wanted to inject some hope into this too because even though I talked about losing my career etc- in many ways I am really doing well emotionally and I am often grateful that I have been sort of forced into some real self examination. I like Sam got into Al Anon and AcoA and I am SO grateful about that! lIfe changing in many ways.
Plus- i have been doing well lately so that helps! LOL
I think you made some really
I think you made some really good points! I was sitting at my son's baseball game in may- it was an absoluely perfect Spring evening and i happened to be having a good day IC wise so it was a nice little evening for me. Anyway- the 3 other moms there were DYING with their seasonal allergies. the one was saying she can't go outside all Spring without multiple drugs and even that didn't always help. Of course, they were sucking down diet coke etc. ANyway- it really made me think- "Maybe I'm NOT the sick one!"
Also- I wanted to inject some hope into this too because even though I talked about losing my career etc- in many ways I am really doing well emotionally and I am often grateful that I have been sort of forced into some real self examination. I like Sam got into Al Anon and AcoA and I am SO grateful about that! lIfe changing in many ways.
Plus- i have been doing well lately so that helps! LOL
Dearest Claire, and all the
Dearest Claire, and all the lovely people on this post :) This post completely resonated with everything i feel and fear as well. As if someone else was writing what's in my mind for me, places I am aware of but afraid to go deeper in. It's incredible how all of you are so thoughtful, kind, sweet, caring, and modest and no one here should ever feel like a looser because we had to slow down or maybe have to postpone a few dreams, for now. It feels like life's moving too fast and we missed the train, but recently I am realizing that might not be the case at all. I certainly wish everyday, that my life path was a bit more different, and that i didn't have to experience this at such a crucial time in my life, but just like you research nerd, I am also realizing that no one around us is problem free. I mean healthwise. A lot of people suffer, and they don't even know that's not normal until worse happens. Hopefully, once our bodies balance out, we'll have a smooth ride rest of our lives, making better decisions about our choices and our lives. I am lucky that i was able to work thru the treatment. I had just made a comeback to design after 10 years away from designing, and invested so much time and money to be able to keep up with the changing technology and my skills to prepare my portfolio and get back in the industry. I would have been really resentful if as soon as i started working, if i had to leave. However, i did have to decline two great positions moving up in my field, to be an art director finally!!!, that hurt a bit at first cause i wasn't sure if i was up to the challenge physically. Although, looking at from another perspective, I have a friend who is an art direector for several years, who just got engaged, and feels ready to quit and just be a house wife and raise kids :)
I am thankful, even though IC is very complicated, hard to treat, there is hope for us and we are actually all getting better. Our goals are not in complete sync with our physical ability right now, but we CAN APPRECIATE what we can have, down to the simple pleasure of having a tomatoe :) And hope to God that all of us anxious to have a baby will get to experience it shortly down the line and i am sure enjoy/cherish every second of it :)
Have a wonderful day!