Despite having a long history of extremely high triglycerides I was only diagnosed after a severe pancreatic attack at the age of 48. I knew a bit about what a triglyceride was , but I’d never heard of FCS. Unfortunately neither had my GP!
My pancreas has been permanently damaged and I have to take oral enzymes in the form of Creon to help me digest food but so far I have dodged diabetes. And for that I’m grateful. But I had lots of questions that no one could give me answers to.
I never received any form of counselling to help me cope with this life changing diagnosis and it felt overwhelming, especially as I was recovering from pancreatitis. Gradually I stopped asking questions as I realised the medical staff were learning on the job as well. Luckily I found Action FCS and their community Facebook page. Other people like me. I wasn’t as rare as I thought!
But 4 months after my diagnosis my consultant retired. I was faced with a different consultant every time I went for an appointment and different advice as well. Then Covid brought everything to a standstill!
So I made it my mission to educate myself, and anyone else that would listen to me, about FCS. I struggled with food. It seemed all the ‘tasty foods’ were off the menu. I was confidently told by health care professionals what I couldn’t eat… but not what I could. So I studied nutrition, and thankfully I’d always enjoyed cooking. So I am now able to re-produce many meals that were off the FCS menu into FCS friendly meals.
It can be a very isolating condition when modern society has so many food centred activities but I get round this by taking my own food with, or contacting restaurants before hand to see if they can accommodate my dietary needs.
As with every life long condition there’s no escape, but you do have choices. And I choose to be the healthiest version of myself that I can be. One life live it to the fullest.
