Tuesday 25 June 2019

It’s My Life



You know that feeling when you realise the iconic heroes from your youth have died or were much older than you ever thought they were…?
This is how I felt when I heard the news that Mark Hollis, lead singer of Talk Talk, (of hits including ‘it’s my life’) met a premature death in February this year.

I was transported back to the cafeteria of a London recording studio; a hopeful ‘Manchester’ wannabe on a tour bus of ill-fated attempts at fame. My teenage band and me had secured a recording contract with a prestigious major record label and thought we’d made it when we were sharing the same canteen as Talk Talk.

Alas, fame and fortune wasn’t to strike, but Crohns disease was.
I’ve battled - you’ve read the blog.
I’ve been angry - haven’t we all?
And now I’m ‘managed’ it’s a pain -sometimes quite literally.

I was young and free and jumping on tour buses and travelling the world and eating pretty much what I wanted, when I wanted. However, a hemi colectomy and a small bowel resection later travelling now is altogether a different matter:

As an example, early in 2014 I was completely med free and following the lofflex diet to manage my CD. As a family we decided to go to Portugal for a well-earned rest. This was the first time out of the country for me using diet alone to manage my CD, so I was incredibly diligent when it came to the food I would eat. At that stage of the diet, I could only eat chicken, rice and carrots, so the thought of travelling filled me with anxiety.

I decided rather than eat the airport and airline food I would take a flask of my own food. In order to do that I knew I had to get a doctors letter. So with doctor’s letter in hand myself and my family went off to the airport looking forward to our holiday together. On arrival at the airport it was the usual summer get away chaos, customs officers were moving thousands of people at a time through the gates; when it came to my turn I obviously took the flask out of the bag then an officer came over asked me to open the flask I gave him the doctors letter. The letter was discussed with  his supervisor , and as this conversation between customs officers continued I could see my wife and kids being ushered through to the gate as our plane was due to take off. By this point my anxiety was peaking. The officers eventually gave me back my flask of now lukewarm chicken rice and I boarded the plane… not a great start to our holiday.

On arrival at the apartment I immediately checked out the kitchen facilities, which were really no better than a camping stove with minimal pots and pans for me to cook my chicken and rice on. Needless to say it wasn’t a particularly relaxing holiday for myself as I was constantly thinking of the food I needed to prepare as well as the return leg of the holiday. I did learn from that first holiday, but what you gonna do? Limit your horizons? Yep done that. Or take mini breaks now and then and go ‘wild’ with a croissant or a slice of cheese. So I’m currently doing the latter. This year I have had a couple of days in a camping pod, a city break and a self-catering haven in the Yorkshire Dales all with the family. I am of course extremely lucky as I can check my inflammation using IBDoc whilst I am away to see how bad the damage is and then spend the next few weeks getting it back on track.

Some people choose really restrictive diets for weight or on principle for example as vegans, and I’m certain they come across as many hurdles as I do. But I guess it’s because it’s their choice. Maybe that’s why I find a restrictive diet so hard - I didn’t choose it. I didn’t choose it but it is indeed my life. So if I can manage the risk, at least I can live it.