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Have any of you experienced a feeling of isolation because of IC? Sometimes it feels so lonely having IC because the pain or fear of pain limits what I can do.
The last few months have been better than the previous ones because the pain and discomfort are not as severe as they once were. But my body will only tolerate lettuce, cucumbers, spinach, beef, chicken, potatoes, and rice (and butter, sea salt, olive oil). It's been this way for several months and I'm getting so tired of watching everyone around me eating all this yummy food. My body is super sensitive to everything because all the drugs I was on really messed up my intestines, etc. The good news is that I am finally to the place where Matia has been able to add some supplements (literally two drops or grains at a time) and though I always feel worse when we add something new, within a few days to a week it gets better.
I also can't drive myself anywhere because sitting completely upright in the car causes me so much pain. I have three teenagers who all have their licenses and they are constantly going to and fro, and my husband is a very active and social person. Meanwhile, I am limited in my ability to go places when they are driving me and I can't drive anywhere by myself. Again, I am feeling isolated. My family is good to me. They run errands for me and take me places when I need it. But I am so tired of this! And because I feel "different" from everyone around me, it is isolating. This is not the "me" I once was and I miss being "me."
Lisa
Hi Lisa! Glad to hear you are
Hi Lisa! Glad to hear you are seeing improvements, but sorry to hear still pretty much home bound and having to rely so much on family! I can't relate that way, but fully understand wishing my system was not so sensitive and could enjoy more foods! I have been in treatment 15 months and on the diet 17 months. I haven't progressed much food wise and actually have gone back to completely list 1 and sometimes adding in avocado and can only tolerate beef, bison, shrimp, potatoes, rice in very small quantities, steamed broccoli and celery, and cucumbers on occasion! I am like you, and have been slow to tolerate different herbs and supplements, drops at a time, and if I push through pain for a few days things seem to settle a bit. My gut is way more damaged then my bladder, but still have annoying symptoms with my bladder.
So hard when people around me can't relate to being stuck eating the same day after day. Or understand the pain we live with and every other odd symptom that seems to along with our imbalances! Hang in there you are not alone! Keep plugging along, we will get there eventually! I will be thinking of you!:)
Hi Lisa, It's good to hear
Hi Lisa,
It's good to hear you're finally able to tolerate little additions of supplements- it shows you ARE making progress, even if it's slow.
While my IC is not as severe as yours, I can still relate to that feeling of the world going on without me. Your last sentence resonates with me tremendously. It's hard to accept the "me" that I currently am, as it certainly isn't who I thought I would be at this point in my life. I often find that I have trouble sharing with people or getting to know new people because I feel like I have this deep level of sadness that is just below the surface. I make small talk and enjoy being friendly, but I feel like my confidence has been so shaken by this experience and I am not the person that I once was.
I hope that this forum helps you recognize that you are not alone and that there are many of us who understand what you're experiencing. I think one big thing that I am taking away from this whole experience is how compassionate we need to be towards one another because you never know what someone else is going through and it's not that hard to be kind and caring- I mean this in a very genuine way, not just acting nice, but really being aware of everyone's humanity and the struggles that we face.
As I've gotten better, I find that my mind finds new things that I wish I could do or have. It's fascinating how hard it is to be satisfied and grateful for what we DO have. I try and remember how much better things are now than they were a couple of years ago for me. I hope that in a couple of years, you'll be able to look back at this time and see how far you've come.
Best wishes for continued progress, and remember that you're not alone!
Claire
Cprince and Claire, Thank
Cprince and Claire,
Thank you so much for your compassionate and encouraging words.
Claire, I totally relate to what you said about this deep level of sadness just below the surface. Sometimes I find it really hard to share in everyone's happiness and smiles. Not that I never smile or laugh, I do! But there's just something inside me that feels bad.
I do look forward to a year or two from now knowing that I will most likely be feeling a lot better. I was talking to my cousin tonight who went through Matia's treatment and she said she was a new person when she was done. She wasn't the old Kelly (like she was before IC), she was a new and improved Kelly in more than just the physical. That was so encouraging and I wanted to share that with you all because we wish so much we could be who we were before IC. But this difficult process is making us better people.
I'm so glad we have each other to lean on and gain strength from. This is truly a marathon we are in and I feel privileged to be running it along side you guys.
Sincerely,
Lisa