Today is a beautiful summer’s day, I can hear grass being cut in the distance and birds chirping across the way in the old oak tree I can see from my bedroom window.
I’m not outside enjoying the sun, nor am I at work – where I should be on a Monday afternoon, instead I’m in bed with my insides knotted up in yet another ‘flare-up’. The spasms are so tight I’m actually holding my breath and resisting the urge to breathe as this only adds to the discomfort and the increasing pain as it continues to build and build.
The end result of this spasm will be me sat on the toilet while, as I put it politely, ‘the world falls out of my ass’. Not an attractive image hey? Imagine that coupled with your entire body shaking, covered in sweat – like you have the worst fever ever, your legs going numb, and just for good measure my knees and calf muscles covered in marks where I’m gripping them so tightly while I sit on the loo and assume the ‘brace position’ and try and deal with the pain.
I’ve only been diagnosed with Crohns Disease recently – 3 December 2012, this date is etched on my brain as fresh and as painful as my most recent tattoo. The diagnosis I thought would be a major stake in the ground after suffering for over 20 years, but the magnitude of the monster I’m dealing with is a lot harder to accept than I ever anticipated.
I imagined a diagnosis would feel like a weight lifted, instead it feels like a life sentence when you know there is no cure. And don’t get me wrong, I know it’s not the big ‘C’ and it’s not life threatening and there are LOTS of people out there a lot worse off, but when you have one of the most socially-unacceptable, cruel diseases, there’s no consolation.
Let’s also get it out there, yes my surname is ‘Croney’ – I am a Crohnie Croney, I wasn’t sure whether to laugh or cry when the irony of my name sank in…
I’m not sure in all honesty why today of all days I feel compelled to share something that is so embarrassing and personal, apart from the fact I have this thing and so many people (including my nearest and dearest) haven’t got a clue what living with this disease actually means. Maybe it’s the fact that last night my hubby advised me to sit down with my Dad and try and talk him through it again, even though my parents have been on this journey with me every step of the way.
The reality of my life now, even after starting treatment – Remicade/Infliximab infusions every 6/8 weeks, which I’m not convinced are working (but that’s a subject for a future blog), is that I live my life by a day-to-day routine and not being able to plan anything more than one day ahead. The latter being a point of frustration for both me, family and friends, especially the ones who ask me if I’m going to be well a week next Thursday to go out?… I DON’T KNOW!!!!
A normal day for me is waking up and within a second assessing how I feel… on a brilliant day I will feel normal with no pain at all (this is rare), or I will have mild/moderate pain I know I can cope with, or within a second of my eyes opening I’ll be in agony and spending most of my day either on, or near to, a toilet.
After getting myself ready, which some days can take an age if my ankle joints are hurting, or my eyes are swollen, or I feel like I’m going to vom (more typical symptoms of Crohns), I can then go on to packing my bag which always includes medication, tissues and perfume, the last two are a MUST and go with me everywhere in case of an emergency – of which there are many.
If it’s a working day my hubby and I drive the kids around to the child-minder before he drops me at the train station. On a good day we can do this journey in about five minutes, on a bad day we may drop off the kids and then he has to drive me back to the house so I can go and sit on the loo. Then when I feel ‘safe’ enough to leave the house he drops me at the station. The alternative outcome to this scenario is that the ‘safe’ feeling doesn’t materialise and then I’m housebound for the rest of the day and I’m forced to work from home.
On the days I make it to the station I have the same thoughts while waiting for the train:
- Please don’t let the train be delayed or cancelled as the station toilet is grim. It’s also locked so I have to go and ask the guy in the ticket office for the key (really embarrassing after the tenth trip)
- When the train comes please let there be a seat next to the loo
- PLEASE don’t let the toilet be out of order or ‘occupied’
- Please don’t let the train be so rammed that people are stood outside the toilet door.
Once I’m on the train I then pray to God, or anyone else who will listen, that my stomach will hold out for the journey, or at least until I get to the station the other end. Nine times out of ten I try and go to sleep as this is the only thing to stop me panicking/worrying the entire journey.
When I’ve got off the train I become a toilet expert, I know every toilet in every station, café, restaurant etc. on my route to the office in case I’m ‘caught-short’ – having to go quickly happens a lot. One minute I can be walking down the road happily and the next minute feel the initial twinge which means I need to get to a loo pronto, therefore having tissues and spray on you at all times is a necessary evil as you never know the state of a toilet you’re going into…
Train journeys are probably the easiest of all if I’m honest. Tubes and buses are like Russian-roulette and I only attempt them when I’m 100% confident I can make it without ‘incident’ as any mode of transport without a toilet is a daunting prospect for any Crohnie.
Car journeys are up there in terms of stress levels, they’re all well and good when you can stop at service stations but when you’re stuck in a traffic jam on the M25 there literally is nowhere ‘to go’ and on occasions the kid’s porto-potty has been disarmed and ready for use as has a bucket. The glamour…
I’m not going to go into every gruesome detail but you get the idea. I basically live my life by needing to know where the nearest toilet is. Having children is actually a blessing in these scenarios as I can normally take them with me into most places to use ‘their facilities’. I also do have a ‘Can’t Wait’ card from Crohns and Colitis UK, but have to say I’ve been too embarrassed to use it up until now.
Having to share the fact that you are just about to poo yourself with either a stranger or friend is probably one of the most shameful things ever, but worse than this is having to reassure your children that Mummy isn’t going to die from her naughty tummy and explain she can’t take you swimming or to the park today as she needs to be by the loo… that’s what hurts most, forget the physical pain.