I had just turned 18 and the top things on my mind were nights out, trips to Ibiza, and the like. This all had to be rethought out once I was diagnosed as I was super ill and my priorities changed.
Since then, I like to be aware of exactly where I’m going if I haven’t been there before, and what their toilet facilities are like. I need to know if they’re free or make sure I have change if you have to pay. I look up menus before eating out so I know for sure that there are dishes I can eat. I’m a vegetarian and try to limit my dairy as much as I can.
They are always aware when we’re eating out and will check the menu for what I can have first before they decide what they’re going to have. I also get fatigued quite quickly so I would have to consider if I’m going to be standing for a long time somewhere or if there’s going to be seating, which would be a help for me.
This has, however, given me more of an opportunity to do other things with my friends rather than just drinking and going out clubbing. We’ve tried out different coffee shops and go for walks instead. I’m now a massive fan of just sitting and chatting over a tea, which some may find boring, but my real friends are happy to do different things with me rather than just using me for going out, which also used to happen before.
I’m now almost seven years diagnosed, but I must still be mindful of the fact that being busy or out and about seven days a week just isn’t feasible for me anymore. I have to force myself to take it easy.
My friends are extremely supportive and considerate if I’m having days where I need a bit more support and have to cancel plans if I’m not feeling up to it. There’s honestly nothing worse than feeling like you’ve let someone down when you’ve made plans with them, but neither my family or friends ever make me feel like that.
Know that, believe us, we really do want to keep our plans, but sometimes it just isn’t possible. It’s important for us to put ourselves first, which can be very tricky sometimes and I’m sure a lot of people can relate!
I know it can be disappointing for your plans to be cancelled last minute, but I always try to offer a rain check for another day and am so grateful when my friends are accepting of that!