Each of us have a story to tell, be it of a time when we have achieved something that we thought we couldn't. A story could be about a dream that changed your life, or even about a person who help you get your life on track. Someone big and important who help put you on the right path, when you went a stray. Who knows, a story can be true, made-up, funny, inspirational any genre of your choice, but for us here with Interstitial Cystitis our story, is based only the truth, and each story you read will be different, but it will all lead up to how each person's life has been changed once affected, by this horrible illness that has only treatment and no cure.
For each of here who tell they story, we all have two things common. One thing being the same chronic illness, that forced us to become different people. It made us give up the things in life that we may have wanted, and this may not go for all, but I know it goes for many and I am one of them who had to become a home body due to the horrible pain, and unexpected spasms of the bladder, with no warnings of any kind. The back pain, and pelvic pain that when bad enough will make you want to either pull out your own hair, or a wig... sometimes when its bad enough you may even feel like jumping out the window ( and I actually mean this literally). I remember all two well how this illness made me jump up out my seat or yell ouch walking down the street or laying on my bed. This will make you mad, angry, sad and even miserable.
Today, I would like to introduce you to a few people who have decided to share their story. Silence is good, at times, but this time silence will not do a thing, when we fight for a cure and advocate for awareness, we each have a mission and part of it includes expressing how we came about this condition. so I asked this question:
" How has IC changed your life, for the better or for worse?"
For me IC has made things very difficult for me. it took away all the things that I used to enjoy and turned them into things that I no longer like. One of the things I used to enjoy all the time and now, don't like it like I used to is cooking. Why? because standing on my feet makes my back hurt, and once my back starts hurting for me everything else follow, and then the pain in the bladder is not to long followed right afterwards. I have learned to pace myself with everything that I am doing, all the way down to washing my hair. My hour window is not very short like most, but for me and like many other's it's not the long. Shopping, is done within 45 minutes and that's only if no one is in the supermarket. I don't, go to many of my children's school functions and the ones I do attend are extremely important like ( Holiday concerts and teachers conferences). I don't attend parent teachers meetings, and I make it my business when I'm in the least amount of pain to discuss my children's progress, as often as I can, so when the meetings do come around, my visits are extremely shortened.
We all end up having a lot to sacrifice, and that's just a sad factor when it comes to this illness. what we all need to do is find ways to work around this illness, and try to have some form of life, no matter how hard it is. No people wont understand you, as said before and many times, by other's but, for us to continue moving each and everyday, we have to push a lot harder than the rest. We have to dig a lot more deeper, and want more each day, and pick ourselves up off the floor, even when it seems like we cant. This illness has turned me into a stone at times, and I just keep reminding myself that I am not that. The best part of IC, is that it brought me to a community of people that I would have never known existed without this harsh illness. I do hope one day when we walk across the finish line, most if not all the faces I see, I pray they are familiar.
" Bladder Me Crazy" Interstitial Cystitis,
Until next post... Stay strong, keep fighting, and never give up!