When it comes to facts about the IC, there aren’t a lot of them that are set in stone. The disorder itself is a big old mystery, and information and facts change as research is done. Luckily for us who have it, research is constantly done and advances are made all the time.
I could sit here and give you a ton of websites that will tell you a lot of the same things, over and over again. Trust me, I am an over-researcher and obsessive compulsive about things, so I make sure I know everything I can about something I am interested. This fares well for bands I like and music I am into, but when it comes to medical conditions that not much is known about, it can be like running my head into a brick wall.
So, I will tell you what I personally know about IC after living with it. First of all, IC symptoms are different from person to person and even in the same person from hour to hour. You can eat the right thing that isn’t supposed to hurt you once and it will be fine, and then the next time it will be like molten lava in your guts. You can do an activity you love – like swimming or running – one day and be fine, and the next it can cause a flare up with rage and bloating like you have never seen. And regular life where you never have to worry about what you do or eat or wear… yeah. Good luck with that.
But, there are good things I know about it. I have always been very in tune with my body and its changes as I have gone through life. I can report that with IC, I am even MORE so in tune. I notice everything that changes as it changes. I know what I can eat (mostly) and what I can’t (mostly, but it varies) to make sure I am going to feel the least shitty I can. I know what to do when I have a flare up (again, mostly, as this also varies) to minimize damage (like the one I am in the middle of now… for example). I know that stress and heat can flare me up, so I try to remain cool and chill and positive as much of the time as possible. It isn’t easy, but it’s necessary. And, I know I am not alone – this affects millions around the world.
I understand the inner workings of my body now more than ever. Even though the disorder can present itself in different ways, I now know what it feels like when I flare or overdo it or eat something I ought not to have. I have an app on my phone that lists foods in categories of “try it,” “eat it,” and “don’t touch it” (paraphrasing here, but you get it). I know I can’t have beer, but I can have wine and hard cider/seltzer as well as most liquors, and that makes me happy. Cuz, let’s be honest, when you’re dealing with something like this, sometimes you just need a drink. Ya know?
The fact is that IC is annoying, painful, debilitating at times, and a lot of the time it is very unpredictable. It isn’t fun and nothing I’d wish on anyone. Another fact is that I am glad that if it was going to happen to anyone in my inner circle that it is happening to me because I use my voice and my life as an example for others to learn from, laugh with (or at), and I keep my spirits up as much as I can – even when all I want to do is crawl into bed and let the world run along without me for a while.
I also know that there are treatments available to me that range from stricter diet maintenance to medical marijuana and lots of things in between. And knowing that the research keeps changing and updating and that there may be a cure at some point before I die gives me hope. And what’s life without a little hope every now and then?
Keep on this journey with me tomorrow, and the rest of the month, to learn and laugh along with me and this crazy adventure that has become my IC Life.
This is a screenshot of the app I use. It has become my IC bible when it comes to what is safe and what is not. It updates all the time, also, so as more research is done, I know right away. It really does make a huge difference, and I don’t know what I would do (or eat/drink) without it.