It all started 7 years ago, I was in a lot of pain, so much pain! I was at home hosting my brother’s birthday party and I couldn’t hide the pain any longer. I went to my bedroom and closed the door, thinking and wishing that I will be better after some stretching. I got on the floor and then I couldn’t move, I couldn’t get back on my feet, even breathing hurt, I tried to scream for help, but the pain was too much plus the door was closed and the crowd was too far from me.
Thanks God for my old mate Habibi, my Golden Retriever, he started barking and help came around. It took my brother, father and husband to take me to my bed.
I have to say, it’s not very easy to get me where I was that night. I’ve been used to suffering from pain for a long time before that. I was 19 when I had my first car accident. I was hurt badly, even went into coma for about three days. While prognosis hasn’t been very optimistic, three months later I was back to my ordinary life. Two years later I had another car accident. This time it wasn’t that traumatic, only few stitches here and there. The third one wasn’t in a car, this time I fell off a horse, ended up with broken arm in 4 places!
I always recovered quickly and was able to keep my life normal. I didn’t even complain about the pain, scars, or anything related to any of those situations. But that day 7 years ago when I couldn’t get back on my feet and was lying on the floor I was scared, so freaking scared!
I went to many doctors, but they couldn’t find anything different to cause the pain. I had so many old injuries, but none of them seemed to be the source of it. Eventually, I produced a very detailed written record of my pains, pointing out every single symptom of ankylosing spondylitis. My fear was confirmed, I had sacroiliac joint damage on my left hip caused by AS. The doctor told me that there was no cure for this disease, prescribed medicine and suggested to buy a walking cane.
I remember faking being strong, just to calm others down. When I got home, alone, I cried my eyes out. I felt like my own body was letting me down, how come after all I have been through this can be happening to me? I managed to put myself back together and after a few days of thinking I decided to move to US. That’s when my journey started.
My neighbour was a very active lady and I used to see her running every day. We’ve spoke about this and how much I would love to be able to run. She recommended me a book “The Non-runner’s Marathon Trainer”. I devoured it in a less than two days and decided that I will run a marathon as well! For starters, I needed to be able to walk for longer, so I started to walk every day.
My goal was to walk at least one minute longer than the day before. Every day going back home to put ice packs everywhere to ease the pain. I had no help, no family around, a cleaning lady that was coming once a week to help me with the deep cleaning, three kids and attending university. The only time to train was literally midnight after having finished with the kids, chores and homework! So, every night I went out walking, every night one minute longer.
At first, I wanted to run a half marathon. It took me 3h59m, my goal was to do it under 4 hours, and I managed! Unfortunately, I hurt myself badly. I kept my running hidden from my chiropractor, I knew he would disagree and told me to stop. I went to his office three days after the run, he wasn’t very happy when found hip bursitis. I got banned from any kind of exercise that provides high impact on my joints for at least 6 weeks. I was so upset, and scared of losing everything I achieved, but he told me to run in the pool with a float belt so that my feet won’t hit the ground. Surprisingly he also suggested starting to train for triathlons. I haven’t swum in years, but once in the pool I said to myself why not? Cycling wasn’t an issue even though the pain in the position can be tough, I managed it.
I registered for my first triathlon which was within the next 3 months and started training without telling anyone, not even my husband. I was training with a program I found on the internet. The day came and I was so scared! The night before I decided to call my husband and tell him about everything. He was so nervous so as a joke I told him not to complain, that at least now he knows where to claim the body if anything goes wrong. He didn’t laugh too much…
Well, long story short, I did it! The feeling was amazing. Since then I have never stopped, it doesn’t matter if I have a triathlon coming up or not, I keep training every day, 6 days a week.
It has not been easy, AS is a very tough condition when I have the flares I have to slow down. The condition has now taken over my right hip, the symptoms are harsh and painful. The fatigue is the worse part for me, sometimes I must skip sessions, focus only on swimming, cycling, or running… But the hardest thing is learning to deal with this disease, because it’s not well known and not every patient has the same symptoms. It is hard to meet doctors with enough experience, and even harder to meet people affected. To this day I have not met one person with AS and therefore I decided to “come out” and talk about my journey. I wanted to share my experience, how I deal with AS and hope to help or inspire at least one person out there. To let them know that it is not over, that you don’t have to give up, that where there is a will there is a way.
After my first triathlon I got my first tattoo, I took a sentence from a poem of William Ernest Henley, it says:
“I thank whatever Gods may be for my unconquerable soul”
I want to be as active and healthy as possible, I will keep pushing myself as long as I can! I still have so much to live and experience and I’m not willing to give up! This disease has not conquered my soul, don’t let it conquer yours!
Renata is an endorphin ‘junkie’, mother of three, working as a hypnotherapist. She was born in Venezuela and moved more times than she can remember due to her husband’s work. While diagnosed with ankylosing spondylitis, she never gave up and pushed herself towards better physical fitness. You can read more of her blogs here or follow her on the Instagram