Celiac disease is a solo disease no one can truly understand what it is like until you constantly have to life your life always on-guard and always fearful that one tiny mistake can make you sick for months.
Having celiac disease has forced my OCDness to go into overdrive as one major component to living with celiac disease is to always be prepared for the unexpected and when I’m not, I pay dearly for it.
Friends and family all try being supportive but can’t possible understand how every detail of your life has changed. No more are the days of just meeting friends and family at the closest restaurant or cafe and not having to worry. No longer are the days of carefree travel and not trying to control and plan every stop in advance. No longer are the days when you could just explore and be spontaneous. Every single thing in our lives is much more complicated. We miss it, we envy those of you who don’t have to live like this but we are also mostly so grateful to finally know what is going on with our bodies, that we learn to accept this is our life.
With a celiac everything comes down to preparation. We need to be prepared for everything and have an option for plan b and c close by as well. I always feel like I need to be three steps ahead of everyone and it can be exhausting. We have no off button. No we can’t just relax unless we are in our own sanctuary of our homes, where we know that there isn’t a hidden trap door that will lead us to spiral out of control for months.
No I’m not trying to be difficult, every time I order something and I am so sick of being deemed a pain-in-the-ass because I need to know how a chef prepares his/her ___________ whatever. Yes, I could probably just eat a salad and save myself the trouble but I’m going to be hungry ten minutes later because there was no protein on it anyway so we learn to get over everyones snarky comments and do our best and pray that we don’t get sick anyway.
Something as simple as running errands or bumping into friends can lead us straight to disaster because we are not always prepared or can be for what we can’t see ahead of time. For example, last week I was running errands and what I thought would take 3 hours wound up being an 8 hour event and I wasn’t prepared, I thought I’d be back home for before lunch instead I ran into an old friend who I hadn’t seen in a while and we sat and had coffee mid-way through my errands. My friend had a muffin with her coffee and unfortunately the coffee place had no gluten-free options or nuts so I just had my coffee and visited with my friend for an hour or so. We then proceeded to shop together for a good part of the afternoon and I had a lovely time but midway though I could feel my temperament change. I was getting annoyed that she was taking too long, that she wanted my opinion on everything, she had to try everything on and I was began to start to shake because I hadn’t eaten. My friend suggested we grab a bite to eat in the food court cause she was starving and as I roamed around the food court I realized that I really had zero options to not get sick so again I was out of luck and downed a giant bottle of water instead. By the time I made it to the car, I was a stark-raving lunatic, starving, shaking like a leaf, still had to get home, unload the car, put everything away and cook dinner without biting anyones head off or bursting into tears. Yeah I tend to cry when I get overtired! But most of all I was annoyed with myself. Why did I change purses and not not prepare accordingly?
This is the life of a typical celiac, things happen and we have all become masters at adapting, we all just have to remember to become masters of enjoying life too. Far to often we are stuck in “on mode” all the time that we miss enjoying beautiful moments that are happening right in front of us because our minds are always in protection mode. We have recognized that we have done the best we can for ourselves and let it go and enjoy where you are today.
And when in doubt double up your stash piles!
Have you been there? How have you coped? What’s your best mall strategy? Share in the comments below.