Have you taken up any new hobbies or activities since being diagnosed with AxSpa?
Being diagnosed with AxSpa can bring some major lifestyle changes. Many have to give up hobbies and activities important to them as they can no longer participate due to pain. On the flip side, many have found new hobbies and activities that they enjoy and work with their limitations.
Have you found any new hobbies since being diagnosed with AxSpa? Maybe your hobby can inspire another community member, so share below!
Read about finding a new hobby that works with your limitations here: axialspondyloarthritis.net/living/finding-hobby
Because the thoracic part of my spine is fused, I have had to change my hobbies from crocheting/knitting and working on a table loom to jewelry making. That means I can stop at any time - I don't have to finish a row! For me that is very important since it seems that I don't get a warning before my back says "Stop!" Also I get to match the jewelry to the person,
this is such great hobbies. I love jewelry and find this is so amazing to be able to make someone else feel amazing in their new pieces.
Nicky (Team Member)
two years after being diagnosed with AS, I wrote my autobiography. My hope was that it would give my children courage when facing adversity. To my surprise, it sold well and many readers found threads of hope in it.
Two years later, my eyes were impacted by AS. I could no longer write but started painting. In three years I did 82 paintings, some of which were in galleries. After those years, I no longer had the strength to paint with acrylics, so now I do charcoal sketches. Much easier on my back and arms!
Having a hobby is a wonderful way to take our minds away from the pain. I hope you're able to enjoy reading as long as possible!I used to sew everything. Had my fingers in every craft you could imagine. Cake Decorating, painting you name it I did it for others and for myself. Reading has been my go to. I think I read over 800 books during lockdown. Now having eye problems that Drs. don't feel they can get my eyes to work together well enough to read as much as I like. I come home from the grocers with wrong items (I don't have money to waste). My brothers all want to know why I'm not making and selling things. I'm lucky I can take out the garbage. They really don't get it. I believe they think if they actually help me to get rid of things they would be enabling 'this Thing I Think I Have'. 🙁 They have to have recognized that after living in this apt. for the past six years that the Younger Me would know ever single person here - I don't know anyone. I just keep to myself. I'm so tired of letting people down. They remember the old Lee and want her back. - So do I, it just doesn't work that way. I may need some serious therapy to accept my New Life. My hands hurt so bad I can hardly hold a book. I don't understand computers or all these new electronics. I haven't lived with anyone in 20 years to observe how they are used so I really don't understand them. I can't depend on me anymore to make an apt. It's a lonely and very judgmental world out there - Even Drs.
the main things to keep in mind are not what people say or do, it is how you react to it. No one can make you happy except for you. They can't feel your inner conflict or pain. You waste valuable time & energy trying to convince them of something that isn't an experience they don't relate to. You have to please yourself. It may appear selfish but it is the route to your own peace of mind & survival. My body & I don't agree on anything. I try things several times, if they work then I accept the "temporary truce", if not I will try a different way. Your body is a war zone, changes occur all the time. You have to accept it yourself before you can accept their reactions to the new you.
Don't know if you ever heard the song "This is me" from the movie "Greatest Show on Earth". My theme song & motivational ideal. Wishing you the strength to take control & endure. .... 💓
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Thanks so much for sharing your wonderful perspective and helpful advice.
I love that song, and appreciate the reminder of how motivational it can be!
~Doreen (Team Member)
Another new hobby that I recently took up was learning Italian. I like this one because not only does the hyperfocus and memorization help me when I’m feeling cognitively burned out, it’s a good distraction for pain times. And it makes me feel like I’m accomplishing some thing and moving towards some thing in the future, even if my body sometimes feels stuck.
