Seven days can seem like an eternity when you’re in pain. These are things that get me through the week;
This is the number one rule. You must ALWAYS try to stay positive. It’s not easy. I have moments where I break down in tears and despair at life but I always pick myself back up again. Never lose hope.
I am a firm believer in the power of exercise. Those little endorphins work wonders and can make the difference between me being a bitch from hell or an extra from The Sound of Music.
Before IC, I loved going to the gym four times a week, lifting weights and trying not to embarrass myself in group classes. I can never forget last year’s horror of trying to get off a spin bike, having a little wobble and with one foot still strapped in, I fell flat on my face, in front of 30 people. I laughed but they didn’t which only made it ten times worse!
Since being diagnosed, my exercise routine has dramatically changed. I don’t lift weights, I don’t go to classes and I don’t even sit on a bicycle (I can thank pelvic floor dysfunction for that). I normally make do with cardio on the stairmaster and an easy yoga class.
Do I exercise when I don’t feel up to it? No. I listen to my body and you should too. You won’t thank yourself for overdoing it.
Do my workouts cause me pain? Sometimes.
Do I think that’s a bad thing? Not necessarily. Rarely am I left in severe pain. Most the time it’s an ache in my pelvic area which goes after a while. I’m willing to put up with that because I need exercise to keep me sane.
I know for some people, the gym is home to the devil and entering is like walking into the pit of hell. It’s not for everyone and that’s perfectly understandable. If you lead a sedentary lifestyle but are well enough to get moving, even a walk round the block can blow off the cobwebs. I’m not going to bore you with the benefits of exercise, this link tells you everything you need to know.
Getting Out & About
I refuse to let IC keep me indoors for the rest of my life. Last weekend, I went to my friend’s 30th Birthday party. Yes, I was the first to leave but it was lovely to dress up, have a laugh and try to forget about things for a while.
On Friday night, I went to dinner and the cinema with a lovely friend of mine. It was the first time we had been out together since my diagnosis. I had always chosen to stay indoors with her because I was in pain or feeling down about life. Normally, we would be downing vodka in a bar somewhere but I had just as much enjoyment from a night spent like this. This is my new normal now.
Nothing beats talking to your loved ones but sometimes you need someone who understands what you’re going through. It’s genuinely refreshing to talk to people who know how you feel. I regularly use Inspire and the Cystitis and Overactive Bladder Foundation forums. They are used by people all over the world with IC and as well as chatting to other patients, you pick up a host of useful information.
If you prefer the more personal approach, my email address is here. I’m always more than happy to listen and chat about anything. I’m really friendly and don’t bite. Honest.
Netflix and Rest
I’m a massive fan of shit TV. I watch all the reality programmes and love them. I don’t care if people say my brain cells will die off, sometimes I like to watch TV that requires absolutely no attention. This can’t be truer than when I’m in pain. My downtime is lying on the sofa with a heat pack, wishing I was a Kardashian. Judge me all you like!
This snapshot of my Sky planner reveals my trash TV habits…
I love food. Food is life. Food obviously isn’t the same on the IC diet but I make do. I am a peanut butter addict and will shamelessly admit the thought of driving home from work to stick my spoon in that jar puts a big smile on my face. My evening ritual is to have Marshmallow Root Tea with (too many) gluten free Hobnobs. I would much rather a hot chocolate and slice of cake but Hobnobs do the job. I haven’t lost my love of food, I just have to adapt it.
I was never really into writing but now I find it so cathartic. I can spend hours typing away on my laptop and it distracts me from pain. There’s heaps of other stuff you can do if writing isn’t your thing. Meditation, knitting, sudoku, drawing, arts & crafts, the list really is endless. I really want to try adult colouring books. They are supposed to good for stress and anxiety and I’ve always been a fan of colouring in ever since I was little. Why do restaurants discriminate and only give crayons and paper to children? I might look like an adult but I don’t feel like one!
Knowledge is Power
My Urologist has told me on several occasions to stay off Google but I refuse to listen to him. Everything I have learnt about IC has come from Google, forums and blogs. Not a day goes by where I haven’t learnt something new. I spends hours reading and researching but it’s worth the time and energy.
It’s scary to read the “horror” stories. Stories of people that have never found a treatment that works and have been left in years of pain and agony. It’s important to remember that people using forums are people in need. There are many more people who have the same condition but are in a good place and don’t need a forum for help and support. If you were feeling better, how likely would you be to post on a forum?
Looking to the Future
My future hasn’t stopped being a reality because I have IC. In two weeks, I sit an exam at work. I don’t have to take this exam but I want to because it will open the door to other job opportunities. I could easily pull out citing health reasons but I would be cheating myself. I would much rather take the exam and fail than not take it at all.
I recently had a few weeks off work when I was in a bad flare and had a colleague deliver my textbooks to me. I wasn’t going to let three weeks pass me by and not open a book even if my bladder felt like it was being ripped out.
After this exam, I sit another one in March. My goals will take longer to achieve but they are still possible. It’s important to always keep moving forward.
I hope you all have a fantastic week,