A silly season survival guide when you’re chronically ill

It's December and my mind instantly wanders to Christmas day; the traditions, excited children opening presents, fairy lights twinkling, seeing people we don't see often enough... It's a time to look forward to for the majority of people, even through all the panic of December, there is a sweet reward sitting at the end where we get to relax and share in love, harmony and peace on earth. Ideally.

Being chronically ill and living with an invisible disability, things can get complex really fast if we let them, mainly due to a mix of ableism, ignorance, and people not thinking about how what they want affects those around them. In late November, I sat my Dad down and set some boundaries around Christmas this year. I had to remind him of my limited energy and mental capacity, and that I couldn't buzz around to three different locations on Christmas day successfully pleasing everyone. I simply cannot sit through Aunty Gladys asking: "When are you going to get better?", that one cousin raving about yoga, Uncle Neil smirking: "you look fine to me!". 

I made the firm decision last year that instead of the marathon I had run most of my adult life (at my own expense), I would make Christmas Day about my niece and nephews and stay in one place. This allows me to be festive and enjoy myself until my energy wanes and everyone knows that when it's time for me to leave, off I go. I now pace myself. One occasion on Christmas Eve, another on Christmas Day and Boxing Day? Well, my husband and I plan on staying home, sleeping in, and basking in the sun with a good book, cold beverage and the cat most of the day. Peak living.

Approaching Christmas this way inevitably leads to someone complaining, citing selfishness, or trying to guilt trip me, but I am only one woman with so many spoons at her disposal. I can't do it all, and that's OK. It's completely ableist for people to expect too much of us or put pressure on us to perform at a level that's simply outside our capabilities. 

Having set boundaries, the next thing I do is set about making my life easier. I have special dietary requirements, so call ahead to see what I can bring. I always take a dish that is nourishing and filling for me, and that can slot into the main Christmas feast inconspicuously. Things like salads, potato bakes, and little treats like rum balls are excellent options.

When calling ahead, especially if it's somewhere new, I always check on the accessibility. Are there accessible toilets? Is there a low sensory space (AKA "Safe Zone") I can retreat to alone if I experience overwhelm? Is there parking available for a quick escape if needed? Most people happily accommodate, and to be honest they are dicks if they think you are weird, are unaccommodating or make you feel uncomfortable asking. Don't go there for Christmas. You deserve better.

I also set a plan to stay hydrated (and stay sane). I will pack an electrolyte mix, an emotional support water bottle, and find myself a special adult non-alcoholic beverage. Whilst I always indulge in a glass of bubbles, if that is badly timed with medication it can interfere with it in a big way. Same with too much. So having someone on your side fielding peer pressure can be vital. If you do see it being an issue? Have an opaque glass or a drink that mimics an alcoholic one. Horrifyingly, as long as you have something that looks like an alcoholic beverage in your hand, most hosts will leave you alone. 

I also write out an emergency toolkit that I can stash in that "Safe Zone" mentioned earlier. I will have medications, tissues, a wheat bag, movement aids, snacks, headphones, regulating sensory tools (eg. a fidget device), and a book or magazine. Snacks usually include things like seaweed, trail mix or fruit. Foods that are gentle on the stomach or provide a lift to blood sugar in between meals and drinks. This toolkit should meet your unique needs and change depending on where you are in your cycle if you were assigned female at birth. 

All that's left then is to sort out presents. I often shop online well in advance, even for groceries and booze, to avoid the last-minute postal clog, crowd anxiety, or no delivery slots available. The only thing worse than a mall, is a mall in December. They are one of the most inaccessible places I know of and are enough to give me nightmares. 10/10 do not recommend. I do my shopping online and top up with homemade gifts. Thankfully we don't have too many people to buy for due to a strict Secret Santa rule between the adults. We set a budget and write wishlists, and that way all the adults get a really decent gift, and everyone is happy with more money in their back pockets. Practical. Done.

I do have a deep dark secret wish though. Every year as everyone else is running around and stressing about Christmas Day - I fantasise about going on holiday. The plan is to book a holiday and just leave. Whether I actually do or not? *wink*