My AxSpa Journey

I have lived with this condition for 30 years now. And I can say it has been a true rollercoaster ride for me filled with many ups and downs. Unfortunately the first 27 years mostly downs. So far, it has been a long journey for me finding out what is the best way to live with AxSpa. Receiving multiple treatments and visiting different kinds of movement therapists.

My shift to a better life

For a very long time, the disease has kept me stuck. Stuck in life and stuck in a kind of mental prison. Thinking and believing that this is it for me and that it will only go downhill. Fortunately that all changed 3 years ago. A friend inspired me to change my lifestyle. A lifestyle with a more healthy diet and more sports did help me a lot. But I also had to change the mental picture that I had for myself. I began to believe that a more healthy life was possible for me.

Celebrating the new me

I will always be grateful to the friend who inspired me to make the change. I have received so much of my life back. A change that I wouldn’t have accomplished only by using medication. I’m also grateful to communities like this. Places like this are where we get to share our journeys and help one another.

After 30 years I still learn new things about my disease. These last 3 years a lot has changed for me for the better. Less inflammation pain, more energy, and being able to find some movement back. Over the years this disease has restricted my movement. So I’m very grateful that my health is doing a lot better.

Setting goals

What helped me a lot these last years was goal setting. Something to keep you going and work towards. Last year despite having 2 prosthetic hips due to ankylosing spondylitis I was able to run a half marathon. Another goal for me is to be able to live without medication.

I have taken biologics for 14 years so far. And where I once used to inject every week I now inject every 2 months. Hoping that by March next year I will only take a painkiller when needed.

Better, but not perfect

At the start of this year, my plan was to do another half marathon this year. However, I took a step back. All these changes have caused me to find a new balance and not overdo it. Even though I don’t experience inflammation pain anymore, the pain due to the damage done is still there. The lower part of my spine is fused and the upper part is damaged and still restricts my movement.

I also have a curve in my spine that causes me to be a little hunched. Stretching myself in bed 2 times a day to keep my posture as upright as possible. So even though it's going a lot better for me, the journey isn’t done yet. But I’ll keep believing that over time my health will increase more.