Hobbies are an important part of how I deal with my AS. Fatigue, pain, and uncertainty often morph into a strong push away from fun or exploration, toward doing only what's absolutely necessary or makes sense financially, but that's not emotionally or socially sustainable. My hobbies help me through the ups and downs of chronic illness by giving me something else to think about and look forward to, connections with other people, and new ways to challenge myself.
To keep my hobbies helpful I try to do something that makes me happy, avoid dwelling on how much my physical abilities have changed, and remain open to new ways of doing things. My main indoor hobbies are crochet, cooking, and holiday decorations.
I grew up watching women make sweaters, hats, mittens, slippers, blankets, towels, and just about whatever else they set their minds to by what seemed like magic. All they needed was their hands, yarn, two sticks or one hook, and they were good to go. I don't knit, but finally got around to doing crochet in my early thirties, after AS. Crochet is one of my all-time favorite things to do after I made peace with learning something that made no sense, not for somebody in so much pain and very stiff hands.
My disease progression has changed how I crochet. Smaller standard hooks have mostly been replaced with their larger sized Tunisian/Afghan cousins. This alternative format on larger hooks is much easier on my hands and shoulders. I've turned toward self-striping yarns to add detail to my projects, while using simpler stitches. Making these changes allowed me to continue to crochet and expanded my options.
Cooking is an important part of my identity and self-care. There was a time when my cooking was ALL from scratch, but that's no longer possible. To stay cooking, I cook in advance and freeze, sometimes use precut or frozen veggies, and often reach for canned beans. Making these adjustments allows me to keep cooking healthy meals with enough energy to clean up after.
Small is beautiful
Full-sized holiday trees are too much for me physically. I usually end up worried about braking all of our heirloom glass ornaments and straining my shoulder. Mini trees are still pretty and make me feel just as jolly.
I do mine with maximum light return in mind. This is easily accomplished by using tinsel trees, reflective materials like foil or laser tissue paper, about 3 times as many lights as before, and setting the finished tree on a mirror or another glass surface. I use lots of flexible decorations like printed tissue paper, curly ribbon from package bows, and shredded paper as easy ornaments.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?