Tracey's story: building a life with arthritis

Tracey Latimer, 61, from Lisburn was diagnosed with osteoarthritis in 2014, fibromyalgia in 2016 and bursitis in 2020. She believes the health service must invest in helping patients help themselves during long waiting times for surgery to avoid permanent damage.

Arthritis cost me my health, my job and my home

I had a heart attack in 2014 and, during cardiac rehab, damaged my knee getting off a trampoline. I saw orthopaedics 18 months later and was told that I had cartilage debris but they didn’t want to operate because I also had osteoarthritis so would need a knee replacement but, at just 49, I was too young. That’s the last I heard, I’ve had no support from medical professionals for my arthritis.

I couldn’t walk without crutches and, as the arthritis developed in my fingers, I couldn’t get dressed so wasn’t able to go out. I couldn’t work and found myself on statutory sick pay and unable to pay the mortgage so my house was repossessed. I lost my health, my wealth and my home.

I’d been a manager at Tesco so I’d run around on a 12-hour shift then come home and run around. All of a sudden that came to a stop and I wasn’t able to do anything. I felt like I was on the scrap heap, my mental health was in a state, I had no self-esteem and I was just done.

Worried, my mummy took me to Arthritis UK’s six-week pain management programme and from there I began to think it wasn’t necessarily the end of the road for me, maybe I still had something to offer. I started using the techniques they taught me and slowly but surely build myself back-up.

No arthritis support from health service

I get out of bed like a tin man, I can’t bend my knees. I had to get an adapted car because my hands are terrible and I have a bungalow because the arthritis means stairs are out. I struggle to stand, can’t shower or dress myself without someone being around because I’ve fallen a few times.

The fibromyalgia means I have to pace myself, if I’m invited to a weeding I have to decide between the day and evening do because I can’t do both. Sometimes washing, getting dressed and combing my hair leaves me with no energy to go out anyway. Fatigue is an overwhelming wave that comes over you.

I went to bed on night in 2020 and woke up with unmerciful pain in my shoulder, so sore I couldn’t verbalise it. My daughter called an ambulance and at hospital they diagnosed bursitis. I was referred to rheumatology and they explained I could get injections but, at that time, Covid meant they were high risk so they decided to treat the pain. That was five years ago and there’s been no follow up, you’re just left to it.

In 2020 I had an episode of bursitis where the calcium had built up and broken off tearing tendons in my rotator cuff which is the last time anyone mentioned physiotherapy to me. I got a letter last week asking if I wanted to stay on the waiting list for physiotherapy but I’ve no idea whether that’s for my shoulder, my knee or my hands because I was referred for all of them prior to 2020.

I’ve given up trying to contact my GP. When you call at 8am they ask if it’s an emergency and, if I’ve broken my toe which often happens, they send me to the Emergency Department. 

Help arthritis sufferers to help themselves

Some MPs do understand that the health service is so broken that the voluntary and community sectors are having to do more, they can’t fix my knee but they can help me manage it.

I’m involved in campaigning for Arthritis UK and have met with MPs. They know the NHS is broken and can’t be fixed with a magic wand so it is about what we can do for those people on waiting lists. You could be waiting 10 years for a new knee, your physical, emotional and mental health getting worse. We need to give more money to the community groups so that people can learn to manage themselves while waiting. It’s about investing in the community to cover that NHS shortfall. If the NHS can’t fix me, it can at least help me help myself.

I always say the diagnosis is an empty box, the impact is the weight, the impact on your employment, finances, relationships are all bricks going in that box and it soon gets too heavy to carry. I’m still in pain, I still fall and break things, but I’ve never been happier. I don’t’ have the life I had but I’ve found something different, more meaningful.

That self-management programme saved my life, kept me going. I applied to volunteer, delivering the course myself, on week six of my own course because I know what a difference it makes. It taught me that arthritis isn’t the end of my life, that I might not have the same life but I can build a different future.