I'm in a horrible flare today, and I thought it might be useful to use this time in which I can't do more than just sit, to tell outsiders more about what living with IC feels like.
For me, living day to day with IC equals quite a bit of pain, but as I have a high pain tolerance, it isn't such a daily struggle. Most of the time my conditions are at the back of my mind, and as long as I can keep hydrated I can function fairly well, although take more frequent trips to the restroom than normal people. When I get a flare, however, things change... my entire life is turned upside-down. It all revolves around my bladder, and the horrid spasms that are causing it to malfunction.
A flare starts out like this... I feel like I have to pee. And not just pee, but pee like an elephant would! So I race to the bathroom, go a teeny-tiny amount, and suddenly the pain gets WORSE. Now it feels like I have to pee even more than I previously did, plus I can now feel spasms in my bladder and also in my urethra. Joy be mine. These spasms are much worse than anything you would feel during your period cramps, for example. They feel like someone has taken glass & mixed it into your water & you are now attempting to pass shards of it through your body. It burns & it aches & sometimes it just feels like it will never stop.
I realize that this is a real flare & I need to start countering it. First I drink lots of water. Today, for example, I've already drank half a gallon in the first two hours I was awake. (Sometimes the spasms are simply because I haven't drank enough water & when that happens it isn't really a true flare, and is usually calmed down by the consumption of water.)
Today I woke up at 4:13am with a terrible need to use the restroom. I could only go about a teaspoon and then the spasms set in. I tried to lay down & go back to sleep, but I was only out for about 5 minutes when I woke up feeling that extreme need to use the bathroom again. Even though I knew it wouldn't help, I tried to go. The cycle worsens, and continues for the next two hours. I sleep from 5-15 minutes, get up & go to the bathroom, repeat. In between time I slug water like a crazed desert survivor, but it doesn't help.
I opt to take a warm bath to see if it can help calm the spasms in my bladder, and also in my pelvic floor muscles. I used water that was so warm it almost hurt to get in at first, but after 15 minutes I felt the spasms calming a bit. Not enough to make a huge difference so I decided to try sleeping with a heating pad on my pelvic area.
About 6am I realize that there is no way I'm going to be able to go to work without medication so I take an Urelle tablet. Urelle is a bladder anti-spasmodic that works a bit like Tylenol. The first thing you're thinking is- Why didn't she take that to begin with? Here's why- Urelle isn't covered very well on our insurance plan and just one tablet costs us $4! That might not seem so bad, but with all of my other medications (some upwards of $350 per month), I have to use the costly ones as sparingly as possible. So rather than take Urelle daily as prescribed, I take it if, & only if, it is extreme circumstances & nothing else has helped.
So with an Urelle inside me, and a half gallon of water, I decided to wait about another hour to see if I can make it to work. I fall asleep for about 20 minutes & wake up still in extreme pain, and with the need that feels like I must pee every 5 minutes or so!
So I make the hardest call of the morning- I call in sick. I don't want to do it, because it is Easter Sunday & my job is important to me... but I have to be honest at this point, and there is not much work I'd be able to get done while racing to the bathroom every 5-10 minutes. I'm very dedicated to my job and so it is hard to admit I can't do it today. We also need every hour of pay I can scrape in so it is a doubly hard blow to have to miss work for the morning.
Now I am sitting at the computer, heating pad on, water close at hand, attempting to explain just how it feels to be me. Just in the time it has taken be to compose this I've hit the restroom 4 times. The Urelle tab has finally started to do its job and the pain isn't as bad, but it is still there. I still won't be able to go to work... and now I'm wondering if I'll be able to enjoy this day at all.
If you know someone who has IC and is going through a flare, be as supportive as you can. It is a terrible ordeal & leaves you feeling very much out of control. If you have IC know this- you aren't the only one & there are so many people who feel this way too. We need to stick together!