My Challenge to Adapt to the Unpredictable AxSpa
I used to live a full-on life, enjoying planning many things such as dinner with friends, holidays, weekends away, various activities, and gatherings in my house. I would get very enthusiastic hosting a party, with “the more the merrier” attitude, or going out and seeing where the evening will take me. I was doing one activity after the next, fitted around my studies or my work, having an active social life, doing exercise classes, and other events.
At some point, aside from a full-time job, I was doing acting training classes during evenings and weekends. I was never questioning how I would feel on a busy day, or whether I would have enough energy to do it all and still enjoy it. I think I was taking my health for granted as I used to be healthy and happy every day. The notion of good days and bad days simply did not exist for me.
AxSpA changed how I live
Being diagnosed with axial spondyloarthritis (AxSpA) has significantly changed my way of living my life. The way to organize my life, planning for living a fulfilled life, doing many activities that were making me feel good, all were suddenly obsolete. Aside from the process of accepting my diagnosis, which took me a few years, and the management of AxSpA symptoms, the hardest thing for me has been to modify my lifestyle so I could enjoy doing things while pacing myself and introducing some flexibility in the way I was planning things.
I had to develop a different approach
Because the reality is I cannot anticipate which days are going to be the “bad” ones. And I have been struggling at the beginning of my patient journey, pushing myself to do more than I could afford physically and emotionally. I would end up feeling exhausted and overwhelmed, forcing myself to have a busy life, trying to convince myself that I can still hold to his lifestyle like I used to. I would use up quickly my limited amount of energy, and overall, it would be a frustrating experience. I have realized that the power of my mind over whatever my body says, has its limits. I had to develop a different approach and listen to my body more if I wanted to live better and happier with AxSpA.
I'm living at my own pace
I have learned to accept the uncertainty of tomorrow, to apprehend it better, almost by being proactive and preparing for the unplanned events. It took me some time to achieve that, particularly while living in a very busy and stimulating place such as London! But I have made that crucial change, I have let go of old ways to see and live my life in ways that don’t serve me anymore. I am listening more to my own body and managing to plan and live at my own pace. Through creative workshops, I have discovered that my natural inner pace is slow, my body moves with ease and confidence at a slow pace.
I feel wiser now
My artistic activities have helped me along the way to deal with uncertainty, to feel comfortable with improvisation and change of plans. I still enjoy doing things aside from work and I don’t feel I am missing out anymore by having a quiet time by myself. Somehow living with AxSpA has made me grow a lot and be wiser. When it’s necessary, I feel good by resting today and preparing for the next day. I have adapted, I live a new life. I am happy and fulfilled again.
Does reading AxSpA patient stories help you in your journey?