Carol’s story

“I have decided to take part in Walk Your AS Off to raise  awareness but also to make sure I’m active every day and walking more.”

In her early 40s, Carol started experiencing pain her hands, feet, back and hips, as well as brain fog and fatigue. It took Carol around 10 years to get diagnosed. Now, she is part of Walk Your AS Off to raise awareness of axial SpA and vital funds for NASS.

Here is her story.

I started with symptoms in my early 40s. However, I wasn’t diagnosed with axial SpA until the day before I was 51, in April 2022.

I first noticed pains in my hands and feet. Then my back was aching. I had stiff and painful hips, brain fog and fatigue. I saw various GPs and a couple of hospital referrals resulting in being diagnosed with fibromyalgia. As I moved into late 40s, it was assumed that every symptom was due to menopause. At the beginning of last year, I’d had enough and saw a private rheumatologist. I saw a great rheumatologist who properly listened to me, examined me, did an MRI and I was diagnosed straight away. I’m now in her NHS clinic.

“As I moved into late 40s, it was assumed that every symptom was due to menopause.”

I have decided to take part in Walk Your AS Off to raise awareness but also to make sure I’m active every day and walking more. I’m still relatively new to my diagnosis and trying to understand how to handle it. My Dad also had axial Spa, and I often attended NASS physio sessions with him when I was in my late teens. He had to retire at 49, was classed as disabled and walked with a stick, I just don’t want to get to that stage until absolutely necessary. I do injections every 2 weeks and take pain killers before bed. During the day, I am moving around as much as I can, I’m not able to sit for very long without my legs and hips aching so I walk around whilst on work calls.

“I have decided to take part in Walk Your AS Off to raise awareness but also to make sure I’m active every day and walking more.”

I’m enjoying walking and have completed Couch to 5K doing a very slow gentle ‘plod’. I’ve also started attending the NASS branch hydrotherapy and physio sessions and really enjoying them. Once a week, I attend a 20-minute strength training session. At the time of writing, I’m suffering a flare up, so the weights I lift have been lowered. I’m also trying beginner’s yoga to improve not only my strength and flexibility, but also my mental health. If I’m calm and in a good mood, then it helps me cope with any pain or discomfort I’m experiencing.

I have a massive amount of support both with family, friends and most definitely at work. My husband is amazing – he deals well with my low moods, fatigue and when I’m unable to do the simple things around the house. He also is great at keeping me laughing which is really important. I work full time and I couldn’t ask for more patience and understanding from my team and boss, they really are my work family. I’m given the flexibility of working from home when I need to and even having a daytime nap if necessary.

Since Walk Your AS Off is about getting your steps in, I’d recommend anyone considering it to go for it. Just start with 10 minutes round the block or even round the garden. Every step counts and keeps you moving. My brother is going to do a walk with me. When I’m meeting up with friends, we are going for a walk instead of sitting in the house or a coffee shop.

“Since Walk Your AS Off is about getting your steps in, I’d recommend anyone considering it to go for it.”

I remember helping my Dad sell raffle tickets to raise funds and I have set up my own Just Giving page for this challenge and shared it on Facebook and at work. If everyone donated £1 it still adds up.

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