“I went on a search for support groups and came across NASS. I had so many unanswered questions, so I was so relieved to find a hub that could give me answers and assistance.”
It took Michelle 5 years to be diagnosed with axial SpA. By that point, she had to give up working. She became so low she didn’t want to leave the house at times. With so many unanswered questions, NASS have her a community and source of answers. Last year, Michelle joined Walk Your AS Off to keep active and give back to NASS.
Here’s her story.
As she sits at her glass desk in the tiny but very, comfy eye-catching turquoise blue and white office, located in her back garden, she gazes out the window located in front of her, which gives a full view to the back of her house. There is the refreshing smell of greenery as the sun streams in, and she starts to reflect on her journey. “How did I get here?” It has not been an easy ride, a deep feeling of fear tug at her heart strings as tears began to roll down her cheek. The pain has been unexplainable, and no one can understand how someone so active, vibrant, and full of life slowly started to disappear. It’s the loneliest of places when you feel like no one understands.
“It was so bad that even washing the plates was a painful chore.”
The constant ache in my back started around 5 years ago. I thought it was either down to bad posture from sitting long hours on the train I was driving on the Victoria line or from giving birth to my last child, Alisha – well at least that’s what I told myself. It was so bad that even washing the plates was a painful chore, so I had to go to the doctor. This then led to numerous GP appointments, various diagnosis from sciatica to slipped disc.
It wasn’t until I developed uveitis that I was referred to a rheumatologist. They sent me for an MRI. Finally, a true diagnosis was made – “Mrs Watson you have exactly what I suspected, severe ankylosing spondylitis and I am afraid it’s at the point where tablets like Naproxen won’t help, but I will have to apply for funding so that a biological injection call Cosentyx can be issued for you.”
“I had so many unanswered questions, so I was relieved to find a hub that could give me answers and assistance.”
This was the beginning of a new story for me. I would love to say that things took a turn for the best. But it didn’t. I was no longer able to work, I became so low that I didn’t even at times want to leave my house. This name ankylosing spondylitis, or axial spondyloarthritis (axial SpA, or AS, for short), most people couldn’t pronounce it. No one knew it or how to even help with it. I felt so lost. After a long while, I was able to pull myself up and went on a search for support groups and came across NASS. I had so many unanswered questions, so I was so relieved to find a hub that could give me answers and assistance.
I decided to sign up for Walk Your AS Off because, until I came to know about NASS, even though I had love and support from friends and family members, there was so much they didn’t know and couldn’t support me with. This has helped me mentally to not feel alone on this journey and able to speak to people that understand and have answers to questions others didn’t know. For example, being able to apply for welfare and benefits support such as Personal Independence Payments (PIP) or support with work challenges. So being able to give back and contribute to a mission that helps NASS continue to support people with axial SpA not only helps keep me moving, but also helps others that like me that may be lost in the beginning of their AS journey.
I have done other fundraising activities like selling raffle tickets and making small donations to appeals because every little helps. So do what you can to help us knock AS on its head.
Inspired by Michelle’s story?
Click here to find out more about Walk Your AS Off.