b is for back to basics

On the 10th July 2009, I stopped being able to wee.

Sounds bizarre doesn’t it, not being able to go to the toilet. It’s crazy how we take these little things for granted. Sometimes going to the toilet can be a bit of a nuisance I know but you really begin to miss those 2 little minutes of peace you get throughout the day sitting on the loo, having a scroll on your phone.

Looking back, 2010 was a huge year for me: starting my A levels, leaving school and my parents splitting up were only the start of what was to come that year.

I was getting ready for my first girls’ holiday abroad in June: bikini buying, a toiletry shop and packing my suitcase were all top priority. After ignoring a bit of a sore throat and dosing up on cold and flu tablets, instead of sunning myself on the beach, I was admitted to hospital with glandular fever. It went from bad to worse as teamed with a low immune system, I was diagnosed with shingles on June 28th 2010. Little did I know, this would be the last time I would do a ‘sit down wee’ ever again.

Although on a lot of pain meds at the time (believe me, a shingles rash is more than just an itch), I remember this night so well.

At about midnight, I distinctly remember my bladder pain was worse than ever. I thought it might be because I needed to use the toilet. That uncomfortable sensation of needing to wee had been replaced with sharp spasms which I now know all too well.

I buzzed for a nurse who took me to the toilet. I sat down, waited, and no wee. I was in agony to use the toilet. We thought that if we ran water into the sink, the noise might make me go. Nothing. We thought a warm bath might make me go. Nothing. Full of panic and pain, my meds were upped and my first urethral catheter was inserted.

At 16, having a doctor poking around an intimate area was mortifying. I remember just wanting my mom beside me but because it was so late at night I was on my own. Gritted teeth and a few tears later, I had a bag strapped to my leg. The next day I was taken to theatre for a cystoscopy. That’s when we realised to what extent the shingles had affected me internally. I was riddled.

I was told that due to shingles attacking the nerves (or the high dosage of opiates), my bladder was temporarily paralysed and I would need a urethral catheter for a while until my bladder started to relax again. I couldn’t stand the feeling of walking around with a tube pulling between my legs for much longer than a week so I was taught to self-catheterise. Self-catheters are 30cm tubes which you have to carry around with you all the time in case you need to wee.

A memory that sticks out for me the most is a positive one. Catheter friendly clutch bags! Clutch bags to match your outfit for the weekend were the in-accessory. None of these mini-must haves would fit my catheters in. The girls went on a mad hunt around TopShop, River Island, H&M to find me catheter friendly clutch bags in all colours to carry with me on nights out.

I was told I would wee again. I was told my nerve spasms would calm and that this was just temporary.  The love and support I received from my friends and family at the time was overwhelming but a year later, I was diagnosed with chronic bladder failure – Fowlers Syndrome. After nearly 100 surgeries and procedures (yes, there is a celebratory party pending – IV prosecco, a bash at the Queen Elizabeth Hospital and a DJ on my ward are all on the to-do list) my plastic tube has become an extension of me and I wouldn’t be here without it.

B is for back to basics – to use teacher talk, I feel I am now ‘greater depth’ at Bladderology, however it is always good to reflect on how far you’ve come.

Written 8th March 2020

b is for bladder

Hey. My name is Aoife Madden and, in the alphabet of my life, B is for Bladder.

I look and act like your average 20 something year old, you may not give me a second glance if our paths crossed in the street but taped to my tummy, unseen by the naked eye, I have a hidden disability.  Something that isn’t visible; something that unless you knew me personally, you would not know affects every part of my life. I know I’m not alone in this. There are many people, like myself, who suffer with a chronic illness that cannot always be seen. By sharing my experiences here, I hope to reach out to others, to share an ‘I can’ attitude and to educate people on the different forms chronic health can take.

B is for Bladder is my own personal endeavour, my own passion project. This venture has been years in the making, gathering dust in the back of my mind whilst I’ve completed school and university at the same time as undergoing many surgeries and procedures. Recent health revelations have renewed my sense of urgency to get my blog ball rolling and the idea for change, to make a difference to people’s perceptions of chronic health have taken precedence. 

So here it is, B is for Bladder – welcome to my world.