What do you wish people knew about your mast cell disease?

[Jess-UKMasto]

Our friends at Mastocytosis Society of Canada shared this yesterday on Twitter, and I found it really moving, because I realised how much energy I spend on this kind of planning. What would your message be to the world?

[Penwiggle]

For me, there are two things I hate most about having these allergic reactions to food.

First, I miss foods I used to love. It's heartbreaking to not be able to eat or drink things because it might kill me. I walk down grocery store isles looking at the things to my left and right, and I'm thinking, 'that'll kill me, that'll kill me, that might kill me, that'll probably kill me.... OH LOOK! something I can eat. One thing in this entire isle.'

There is SO MUCH processed foods with possible cross contamination with other foods, it is shockingly unreal. I have found 3 cereals that I can eat that don't contain, or might contain, nuts. THREE!

Secondly, I have a low level, but persistent fear about EVERYTHING I eat or drink. It didn't send me to A&E yesterday, doesn't matter, it might today. And that takes a mental toll that is difficult to explain to people.

Here's my analogy for people who don't get it.

I'm going to get six hypothetical pistols, that each hold six bullets. I'm going to randomly put 1 hypothetical bullet into one chamber in one of the guns, spin the chamber and put it down with the rest. I'm also going to get a stack of cards and write a body part on each - stomach, leg, face, arm, hand, etc.

Every time you have a meal, have a snack or get a drink, I'm going to rearrange all six guns, spinning the chambers as I do, and shuffle the cards. You then have to pick up a gun and draw a card. Then, place the barrel of the gun up against the body part and pull the trigger before you can enjoy your meal.

There is only a 1 in 36 chance the gun will go off, and if it does, it probably won't kill you. May just leave a scar on the side of your leg, or a hole in your arm. But, there is also a chance, a slight chance, it will kill you.

That is how I feel about everything that goes into my mouth.

Pen