hi all.. i took a long time with this.. finally i have sat down and written it...
here is a letter to people without ic....
Hi, i hope you will be kind enough to read every word of this letter to the end. it means a lot to me that you understand how i feel...
I am still me. but i have this painful chronic bladder disorder called interstitial cystitis (IC) It is a chronic inflammatory condition of the bladder. Its cause is unknown. "Common" cystitis, also known as a urinary tract infection, is caused by bacteria and is usually successfully treated with antibiotics. Unlike common cystitis, IC is believed not to be caused by bacteria and does not respond to conventional antibiotic therapy .the cause of it is unknown and there is NO cure. all i can do is to live with it for the rest of my life and try to cope.
Imagine, i need to go to the toilet every 20-30 mins. i can't hold my urine as it is extremly painful --it is just like you are having hot burning lava in your bladder and you JUST have to go!!! i spend alot of time in the toilet.
everytime i go in the cubicle, i have to brace myself for a 'volcano eruption', painful pee session and when i pee, i get all tensed up, my face turns red, i break out in sweat, i need to bend over , curl up and grap onto anything like the toilet rolls holder and let out the HOT BURNING LAVA PEE....and when it's done, i have to make sure there is no second round of pee/leakage, let the pain relieve slowly and then i can zip up and get out... not to mention i will be BACK after 20/30mins...
Each pee session is so torturing for me and i even have to wake up every hour or so when i sleep to pee hot lava!!!
when i am not in the toilet, there are timeswhen i get a flare, and i have this terrible burning pain in my GROIN area and i just can't move or even think properly. Do YOU even have the MOOD to do anything when your vagina/penis is burning with hot lava???
on top of that, i am depressed. how can you be happy when you have this kind of pain?? i can't even do normal things like sit through an entire movie!!i never know when i am going to get a flare and it affects my entire life!!i am scared and i don't want to be a burden to anyone... I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too. „« Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal
that is my life and i am struggling to cope with it. i don't expect you to help in anyway as you can't. i just hope that you will be more understanding and patient with me when i am in pain, when you have to wait for me when i am in the loo, and be sensitive when i am depressed!
sometimes i feel so left out! it's like i don't belong or i am weird or something. sometimes i just can't take it anymore and don't even feel like living.i will never be fine or ok... but it is comforting and nice to hear you utter words of concern to me once in a while. i really appreciate that. i hope you will be here for me just as i will for you. thank you and God bless.
hope you like it and please give me your feedback, what to amend, etc grouphug
here is a letter to people without ic....
Hi, i hope you will be kind enough to read every word of this letter to the end. it means a lot to me that you understand how i feel...
I am still me. but i have this painful chronic bladder disorder called interstitial cystitis (IC) It is a chronic inflammatory condition of the bladder. Its cause is unknown. "Common" cystitis, also known as a urinary tract infection, is caused by bacteria and is usually successfully treated with antibiotics. Unlike common cystitis, IC is believed not to be caused by bacteria and does not respond to conventional antibiotic therapy .the cause of it is unknown and there is NO cure. all i can do is to live with it for the rest of my life and try to cope.
Imagine, i need to go to the toilet every 20-30 mins. i can't hold my urine as it is extremly painful --it is just like you are having hot burning lava in your bladder and you JUST have to go!!! i spend alot of time in the toilet.
everytime i go in the cubicle, i have to brace myself for a 'volcano eruption', painful pee session and when i pee, i get all tensed up, my face turns red, i break out in sweat, i need to bend over , curl up and grap onto anything like the toilet rolls holder and let out the HOT BURNING LAVA PEE....and when it's done, i have to make sure there is no second round of pee/leakage, let the pain relieve slowly and then i can zip up and get out... not to mention i will be BACK after 20/30mins...
Each pee session is so torturing for me and i even have to wake up every hour or so when i sleep to pee hot lava!!!
when i am not in the toilet, there are timeswhen i get a flare, and i have this terrible burning pain in my GROIN area and i just can't move or even think properly. Do YOU even have the MOOD to do anything when your vagina/penis is burning with hot lava???
on top of that, i am depressed. how can you be happy when you have this kind of pain?? i can't even do normal things like sit through an entire movie!!i never know when i am going to get a flare and it affects my entire life!!i am scared and i don't want to be a burden to anyone... I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too. „« Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal
that is my life and i am struggling to cope with it. i don't expect you to help in anyway as you can't. i just hope that you will be more understanding and patient with me when i am in pain, when you have to wait for me when i am in the loo, and be sensitive when i am depressed!
sometimes i feel so left out! it's like i don't belong or i am weird or something. sometimes i just can't take it anymore and don't even feel like living.i will never be fine or ok... but it is comforting and nice to hear you utter words of concern to me once in a while. i really appreciate that. i hope you will be here for me just as i will for you. thank you and God bless.
hope you like it and please give me your feedback, what to amend, etc grouphug
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