Ten Years With AxSpa - My Longest Relationship!

Ten years with my dark passenger (for those who watched Dexter 😉), my longest relationship! Oh...we had some big fights, some crises, and some resentment along the way. I cried many times, and with time, maybe I have learned to laugh a bit more about it. The thing is we can’t split up right?! I mean, you are not giving me much choice there, I have to keep you and make a relatively happy life with you.

I would not say we are like an old couple now, but I have learned a lot already. And I can say with confidence that we have found a routine that works for us. I mean...for now! We all know how relationships can take an expected turn sometimes. So nothing is set is stone, this will always be a work in progress to reach a healthy balanced life with you and coping with the consequences! I have accepted it by now, and I have decided to be loyal and give my health priority. That means me and my life with AxSpa come first in the decisions I take.

5 key things I have gained and used to adapt to a new life with AxSpa:

1. Seeking medical care

I am in charge of my health and I work in partnership with doctors. I rely on myself to express my needs and make sure my questions are answered. If I am not happy with the consultation or outcomes, I ask for a second opinion. I don’t give up until I am satisfied with the answers I get and I agree with the care plan suggested. I serve myself and I don’t compromise. I exhaust options and explore any avenues. That leaves me more knowledgeable and able to decide with enough information and without regrets.  

One highlight: attending the Axial Spondyloarthritis rehabilitation course in Bath!

2. Pain management techniques

I built myself a toolbox over the years, being inspired by other people living with AxSpa, working with clinical experts, attending chronic pain management program, exploring physiotherapy, psychology and relaxation approaches, using medications when needed, and most importantly keeping my spirit high with movies, series, jokes and nice chats with friends.

One highlight: trying acupuncture!

3. Lifestyle adjustments

These have been significant for me in terms of planning my activities in my diary, pacing myself so I don’t run out of energy and don’t exhaust myself. I try to balance my life between work, social life, self-care, exercise, creative activities and resting, so my life is fulfilling and fun, and I have time resting at home and doing very little.

I choose to go out on certain days of the week and not others. I avoid too many plans on the same day, no matter how exciting they are. I have improved my sleep hygiene a lot over the years and explore different diets. Eating more adapted food is a work in progress.

One highlight: working from home, with a heat pad on my desk chair.

4. Emotional well-being

I have explored this aspect of my wellbeing at a later stage after dealing with the physical symptoms, which were a priority. I have done several therapies to deal with the grief of my previous life, to work on accepting my diagnosis, and let go of unnecessary weight on my shoulders and obsoletes plans I had.

I am naturally a positive person and optimist, and I needed to reconnect to that part of myself after my physical break down. I was living with a lot of stress and anxiety, which I learnt to manage with meditation mindfulness, breathing exercises, gentle movement, creative activities.

One highlight: moving to Scotland for a life more settled and closer to nature.

5. Relationships and support systems

This has been a great journey to find groups within patient organizations and online communities. I have felt supported from the start by attending an exercise group for people with AxSpa in London where we did physiotherapy and hydrotherapy and we had a chat afterwards which really helped to exchange on personal experiences and get some tips and advice from others. Being able to connect with other people who can understand what I have been through, or what might happen just now, is so valuable. And being able to share my story has been therapeutic and rewarding.

With time and practice, I have improved my ability to share more my story and needs with my family and colleagues. This is also a work in progress for me, particularly for love relationship.

One highlight: being able to support others via NASS Charity (UK) and Health Union.

Looking to the uncertain future

I don’t know what the future holds for AxSpa and me, but I can say that the past decade has been transformative. Yes it’s been hard at times, I have never struggled with my health until I was diagnosed, and I have never experienced such pain and despair. Yet, I have been able to look after myself, get better, get help, become hopeful again and make plans adapted to my needs and be realistic about what I can aspire to and what I can achieve. I am more equipped today, have more empathy and resilience, I am wiser, and I can embrace difficulties.

There is still a long way to go for me to trust myself more in my abilities to do things, to take engagement and honor them, to dream bigger and allow myself to take risks in a measured and reasonable way. When I write these words, I can feel the thrill. This is scary and exciting at the same time. I have started to take more risks lately outside of work with some activities that are physically demanding or put some responsibility on my shoulders, and I have to say that I was successful in enjoying those activities and gained more confidence in my body and abilities. I know the next step for me will be to take more risks in my career to pursue some ideas I have.

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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.

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