A woman rolling on a clock down a wobbly hill

My Most Valuable AxSpa Strategy Is Pacing

After my diagnosis with AxSpa one doctor told me that I needed to pace myself to manage chronic pain and chronic fatigue. I had no clue what pacing was and how to do it. Then I was having a hard time with strong symptoms, lack of sleep, and very little energy daily all spent to go to work and back home.

A journey of trial and error

My journey towards learning to pace myself was made of trials and errors and falls into the typical pattern of boom and bust. I recall that feeling on the "good days" when getting some symptom relief, I would achieve so much, with a sense of beating the disease mixed up with some denial as I was still processing my diagnosis. Those famous good days in a booming way would be followed by disastrous bad days in a busting way.

I would find myself exhausted, powerless and in despair, able to do less and less day after day as I could not recover after each cycle of boom and bust. This led me into a phase of lethargy, not by being lazy but rather because of having tried so hard to help myself and pushed through the fatigue and the pain. I then reached a low point, feeling isolated and depressed.

Learning to stick to the plan

In that context, pacing is one of the biggest learning I have made in my journey with AxSpa. I managed to pick myself up and learned how I could help myself with an adapted strategy, valuable peer support, and some discipline to stick to the plan. I learned the concept of pacing by attending self-management and rehabilitation programs for patients with chronic conditions and by talking to healthcare professionals.

On paper, it sounded tedious and boring to me, having to plan the activities of the day and make sure I will use my energy wisely. I wasn’t used to this lifestyle. Before AxSpa, I took my health for granted and I trusted my stamina to say yes to all plans offered to me without questioning.

Learning what drained me

So, I had to observe myself, listen to my body and notice where I was using a lot of energy, where I was wasting some of that precious energy. I would not have guessed that taking a shower, going food shopping, or meeting some friends in a pub were those draining activities.

I used a weekly planner to organize my week breaking down big tasks or chores in smaller chunks which meant I was pacing myself, alternating periods of rest with home activities, self-care routine, and same with outdoor ones like shopping and social life.

I started by timing my shopping time to thirty minutes maximum around my neighborhood before returning home. I would then note how I felt, physically and mentally, to see if I could repeat the same the next day. For going out with friends I would decide to join for one hour or two and would head home. I could see in the eyes of my pals that they did not understand what was happening to me and why I had to go home early. They were used to the party animal version of Julie!

Learning discipline

Pacing requires discipline to stick to what is best for me, and handle the frustration (mine and others) with care. I felt I had to be strong at the start when I was trying to find my feet in the new world of pacing. All was new to me, and it was hard to express what I was experiencing and why I was trying to do things differently.

I did not want to overwhelm myself by feeling I had to explained myself to everyone. It was challenging enough to learn how to manage my condition. With time, I also learnt how to share more about my experience and feelings dealing with AxSpa and communicate about the changes I have made to live better life with it.

Pacing has become a healthy habit and I still write on my diary my activities in different life departments and make sure fun/pleasure is filled up as well as work and other duties. I pace myself about the outdoors activities and gatherings so I enjoy them without exhausting myself.

What works now might not work in the future

I am also aware that pacing is a work in progress and is bound to change with time. New circumstances can affect the way I need to pace myself to successfully live a better life with AxSpa. This is ok with me because I feel powerful and in control by doing it. I am happy to be able to help myself and empowered with my ability to choose what I can afford to do and when I need to rest.

What is your experience regarding pacing? How are you doing it? Do you have any strategy and/or tools you wish to share?

By providing your email address, you are agreeing to our Privacy Policy and Terms of Use.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.