I Get Less Flares, and I Am Ready for Them: Building an AxSpA Flare Toolkit

I can happily say that since I started to take biologics for my AxSpA, I get less flares. These were debilitating, creating swelling in my feet and knee, making each step painful, and significantly reducing my mobility. I remember at one point I thought I would end up using a wheelchair because I could not carry on walking with so much pain. That was a lot to take on physically and mentally. Now, I feel extremely lucky to have a treatment which prevents massive flares like these. I can still experience flares, with a lower intensity, and I have learnt to manage them better along the way.

Finding a flare toolkit

I have done some self-management programs in the past few years, some specifically run for people with AxSpa and some for people with chronic conditions. The overarching aim of these programmes is to give people the tools to take control over their conditions. While we cannot predict the bad days or the triggers for a flare, we can be prepared in case we feel a flare is coming. So, we talked about toolkit to manage a flare, find what could work for us individually.

We made a list so we can remember what to do on those days when our mind is functioning at a low speed. Certainly, on these days of foggy mind, fatigue, and low energy, I need easy steps to look after myself. I need specific actions to do that I know will have an impact on my state to improve how I feel physically but also mentally and emotionally.

My tools

My priority is to put things to manage a flare in an obvious place, easy to reach, in a small bag dedicated to AxSpA. In there, I put some anti-inflammatory drugs and painkillers which I will need on those days to go through the phase of a flare. To go with these, I like to have some products to apply locally in case one joint is swollen, painful or if I injured myself, some products which I know can relieve tension and aches in my joints and muscles (tiger balm, arnica oil and cream, massage lotion).

Another important thing for me during a flare, which helps me to recover, is to sleep. Few good night sleeps and daily naps are restorative. So, I know I need to spare some time for that proper rest, even if it means cancelling activities, reducing my social interaction and focus on myself for a few days. It will speed up my recovery if I am diligent in doing that. I have noticed that people are understanding if I cancel because of health issue, this is a reason good enough to postpone a chat or a meeting to another time.

Tending to my mental health

Then, another important aspect of self-management during a flare is my mental health. Because these episodes send me back to my misery at the beginning of my journey with AxSpA, when I did not have any treatment and my hope to get better was thin. It’s important to keep my mood up and my spirit light and positive during these difficult times. Therefore, in my toolkit for flares, there are things to make me feel good and make me laugh! I have a list of feel good, funny movies or series to watch which lift the atmosphere straight away. I can forget my pain and relax on my sofa for a while. It also works with music, funny videos, and stand-up comedy shows. I look for activities with low impact on the body, not energy-intensive, so I can cope and enjoy doing them.

Getting back to my routine

This combination of things to make me feel better during a flare has been built with experience, trying different ticks and advice from others, and finding my own. After a flare, I make sure I restock any medications and products if I have used them all. I also carry on collecting ideas of movies to watch or things to do when I stay at home with a flare. I guess I look for a productive way to use my time while resting and being patient, waiting for better days to come. So, when I am better and can go back to my routine, I can see the positive in this pause I had, as I treated myself with things I was looking forward to do.

What is in your flare toolkit?

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