This time last year, I was waking up from my anaesthetic being told I had Interstitial Cystitis. It’s one of those moments I’ll never forget and the past twelve months have been a crazy journey of acceptance, hope, courage and strength.
I’ve spent the past year doing everything I can to get myself healthier. That’s easier said than done when you’re dealing with such a poorly understood condition, some don’t even believe it exists.
The past few months, I’ve been living a relatively pain free existence. I still have daily niggles, twangs, shooting pains and the rest but nothing like the agony I was putting up with. My toilet trips still feel like a game of russian roulette wondering if peeing will leave me in pain but more times than not, I dodge the knife.
I have eased up on the IC diet and no longer approach it with militant like accuracy. Instead, I am now like an unsupervised kid in a sweet shop and cannot stop eating chocolate, cake, biscuits and anything else loaded with cocoa and sugar. My waistline hates me but fuck it, I’ll take an extra few pounds if it means my bladder has calmed down from the angry, bleeding bitch she once was.
There’s a lot of food I am terrified to sample like tomatoes, strawberries, spicy food etc. I am trying to be big and brave but it’s hard because I don’t want to eat anything that might induce pain. It’s an ongoing battle I have with myself but I’m trying to introduce something new every week. This week saw the welcome return of avocado. I really had missed that ugly green ball of mush.
I’ve had 12 bladder instillations which I believe have really helped. They were hard to begin with but the twelfth one was like coating sunburn in aloe vera and my bladder has never felt so soothed.
Sadly, I haven’t had one for a few months because my private health insurers don’t cover the ongoing treatment of chronic conditions (cheers guys) and I’m waiting for a NHS referral. I did look into paying for a couple myself but Dr E charges an eye watering £1300 for ONE instillation. It’s actually not his fault, £990 of that is taken by the hospital. Suffice to say, I don’t have a spare few grand lying about so I’ll have to sit tight and hope the wait isn’t too long.
I take 10mg of Nortriptyline at night. I count myself lucky to have zero side effects apart from occasional drowsiness. I’ve come off all my supplements and put the saved money towards my chocolate addiction which I’m sure you’ll agree, is much more fun.
I still use Prelief, especially when I’m drinking alcohol. Yes, like milk to a baby, I’m back drinking vodka. Not regularly but enough to give my social life a much needed boost. I stick strictly to vodka and lemonade and along with Prelief, my bladder tolerates it just fine.
I don’t know what has excited me more, being able to drink alcohol or gorge on milk chocolate again. Without wanting to sound like a food addicted alcoholic, I think only when something you love is snatched away, can you truly appreciate how good it is to have back.
I have spent hours and hours educating myself on IC. Lots of people contact me (which is always so lovely) asking for advice and I tell everyone to read up and educate themselves. Google has been my best friend along with various forums and Facebook groups. Go armed to your doctors with what you want from medication, treatments etc. You’ll probably find that sadly, you know much more about IC than they do.
I was recently encouraged to put out this post and tell people I was cured. I want to be clear, I am not cured.
I am too scared to even say I’m in remission but what I will say is that I’m currently managing a chronic condition. I have been able to get my life back to an extent I never thought possible. I am all too aware that things can change in an instant and I am not taking this respite for granted.
Interstitial Cystitis is something I will have to manage for the rest of my life and my journey is far from over.
If there’s one thing I want you to take away from this, it’s hope. A chronic condition does not always mean a life sentence of pain and despair. I am testament to that.
I wish more people in my position would write, shout and preach it because this time last year, it’s exactly what I needed to read but instead, 98% of what I saw was utter misery.
So when you’re having a shit day, in pain, crying and despairing, remember me. I was once that person and now I’m loving my life again. It does happen.