A man sits on a bench at a train station, looking up the rails and waiting to see the train.

I Feel Like I'm Waiting Not to be Sick

I often feel like I am going to wake up some morning and this was all a bad dream, a nightmare. Although I find it hard to remember my life before pain it's also hard to imagine being in this pain for the rest of my life. I am also hoping that in the future there will be a cure for AS, but I know I need to start thinking realistically and about things I can control now in the present.

Facing reality

Often I think of the future and think one day I will be saying "remember when I had that?" or "remember when I had to take all that medication and inject myself? “That was crazy”. But that is not the case. Having a chronic illness, such as AS means that I will have this for the rest of my life. This is hard to grasp. Nothing can prepare you for this.

You need to adapt and change your life to deal with AS. This is hard but you will find what works for you. For me, it's regular light exercises such as walking, stretching, pilates, and yoga. These are vital for preventing stiffness. Whether I am having a good or a bad day I will always stretch throughout the day, even if this is in bed. I always ensure to get up and walk around the house so I'm not in the one position for too long. I find sitting for a long period of time makes me feel like I am The Tin Man. Incorporating rest into your day is important. Listen to your body.

Even though I have come to terms with the fact that I have this illness forever. Sometimes I do think maybe it will go away. I think: what would my life be like now if I didn’t have this condition. What would the future hold for me if I didn’t have this condition?  Dwelling on such thoughts often leads to feelings of despair. I'm starting to realize, thinking like this is pointless even though it can't be helped.

Living in the now

The remedy to this is living moment to moment and not getting fixated on the big picture, which is out of my control anyway. Have a routine, take baby steps and be kind to yourself!

Having AS has made me realize just how strong I am. It has also made you strong and has already tested and proved your resilience, mentally and physically. You have had so many setbacks (diagnosis, emotional upset, flares) and are only getting stronger. And really, I think this strength is key to healing.

We are all different, but we share this illness. We can get through this, together. I find that strength doesn’t come from what is easy but rather from things we thought we could not do, yet we overcame, even though at times it felt hopeless.

I have decided to force myself out of the mindset of waiting to not be sick. But instead, to take action on helping myself and live now and be the best I can be right now.

As you know, AS is incurable, but we can do things to help our future selves. Like I said above light exercise, for some people a change in their diet can help, better sleep, etc. Each individual is different, and we all have different ways of helping ourselves. Finding what helps for you takes time, but patience and perseverance is key.

I have tried and failed at lots of adaptations in my journey, which resulted in my symptoms flaring. I think of this as a positive, at least I tried and at least I know now. I can try something else and find what works for me. And you can too!

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