I started taking part in the ‘Spoonie Christmas Challenge’ on Instagram but predictably struggled to keep up with it! The Christmas Challenge was to answer one set question about your illness everyday. I thought it was a great idea so I’ve rolled the whole month into one bitesize post.
What is a Spoonie I hear you scream?! A Spoonie is someone with a chronic illness or disability. The term originated from a post written by Christine Miserandino entitled The Spoon Theory. Check it out.
#spoonie is used all over social media, with over 700,000 posts on Instagram alone.
What Illnesses Do You Suffer With?
I have Interstitial Cystitis (in-ter-stish-uhl) which is chronic inflammation of the bladder wall. Most IC patients have recurring pelvic pain, pressure, or discomfort in the bladder and pelvic area and also urinary frequency and urgency. Some patients will urinate sixty times a day or more and the pain can be likened to that experienced by cancer sufferers. I am thankful not to fall into either of those categories but it highlights just how serious this condition is.
There is no known cure for Interstitial Cystitis but there are treatments available to help relieve symptoms.
In the UK, there are 400,000 sufferers (mostly women).
What’s the Craziest “Cure” Someone Has Offered You?
Water fast for 28 days. Yes, that’s right, drink only water (no food) for 28 days. I wouldn’t survive 28 minutes!
What Do You Want People to Know About Your Illness?
This is something I will have to manage for the rest of my life. I can’t pop a pill or have surgery and be magically cured. I will never “get better” but I hope to get to a healthier place than I’m in right now.
Favourite Guilty Pleasure
Reality TV. Trashier the better.
I only drink water and peppermint tea so I’m not spoiled for choice here! I’ll go with water.
Favourite Inspirational Quote
“To love oneself is the beginning of a lifelong romance”
Painkillers, heatpack, water, trash TV, internet connection, comfort food and positive thoughts.
I am very fortunate to hardly take any medication. Dr E wants to start me on Amitriptyline which I’m reluctant about because of side effects (especially weight gain). I’ll see how things are in the New Year and make a decision. If anyone has experience of Amitriptyline, please let me know!
Remember to check you have enough medication to get you through Christmas. I’ve just put in a last-minute order and hope it arrives before Santa does!
If You Could Get Rid of One Symptom, What Would It Be?
Pets or Service Dog
I’m not an animal lover so can’t insert any cute photos of my non-existent dog or cat.
I very rarely take selfies so this is the best I’ve got! Rocking the hospital gown and stockings chic.
Friends, parents and other sufferers I have found through this blog, social media and forums. Never underestimate how comforting it is to talk to someone who knows what you’re going through.
How Has Your Illness Made You a Warrior?
IC has taken a lot from me but in return, it’s shown me how strong I am. If I can get through the shit 2016 has thrown at me with a smile on my face, I can get through anything.
Throwback of Healthier Days
My best friend treated me to a day at Cadbury World for my Birthday in May this year. It was the best present ever for a certified chocoholic. I had chocolate, followed by more chocolate and ended the day with a chocolate afternoon tea. It was amazing! I do find it hard not eating chocolate especially at this time of year. I normally spend December knee deep in Quality Street wrappers shouting “Fuck it, it’s Christmas!”
Most Helpful Advice?
It’s okay not to be okay.
Shout Out to Your Doctor
Dr E! A little ray of sunshine amongst all this chaos.
Favourite Safe Food
Porridge with blueberries. Very boring but hits the spot every time.
This is what the inside of an IC bladder looks like…
(It’s important to point out that you can still be diagnosed with IC and have a healthy looking bladder)
Favourite Warm Drink
It’s a toss up between Peppermint Tea and Peppermint Tea. I’ll go with Peppermint Tea.
Favourite Christmas Movie
I hope you all have a happy, healthy, flare free Christmas. Unfortunately, our bodies won’t know it’s holiday season so remember to take it easy. It’s okay not to be able to keep up with the celebrations. Your health is the number one priority.
ps. I passed my first exam! I was shocked and so happy especially when I found out I was in the top 7% in the country. Up yours IC!