After a delayed diagnosis, Eileen O’Brien was finally diagnosed with rheumatoid arthritis (RA) in late 2021. She recently celebrated turning 60 and, after running a successful childcare business for almost 30 years, is now retired. This allows her to enjoy a full, active and sociable life whilst offering more available time to help her follow some crucial self-management strategies. 

“About eight years ago, when I was in my early fifties, I started to have severe hip pain and developed a limp. I went through the usual cycle of consulting a physiotherapist and taking anti-inflammatories, but eventually I had to have the hip replaced. I was running my own creche/preschool at the time and, although the job gave me enormous joy and pride, I knew something was still not right within my body. 

A few years on:

“I had a path worn to the GP. I explained that I was still suffering from debilitating fatigue – I was fit for nothing after a day’s work. Then a consultation with an endocrinologist followed as I already had an under active thyroid.  My eltroxin dose was ‘tweaked’, but, surprisingly, my bloods otherwise seemed okay. I was told that it could be just down to stress from covid and running my own business.”

“…it’s useful to keep a diary of your symptoms as otherwise you can get muddled.”

The body doesn’t lie

“When I reopened the preschool that September, my elbow suddenly swelled up like a balloon and it was extremely painful. A different GP saw me and directed me straight to A&E. The doctors there asked me to straighten the elbow, but I couldn’t. I wore a sling for a while but, two weeks later, I was still in pain so, when I returned, they took bloods again. This time, definite markers for RA showed up.

“Thankfully I didn’t have to wait too long to get an appointment with a rheumatologist. In the meantime, the GP put me on steroids, which really helped with the fatigue – I finally got that bit of zip that I needed to keep going with a busy life. Then, once I saw the rheumatologist, I went immediately on methotrexate and attended appointments to see how things were going every three months. It was at this stage that I had to give up work and close my business – it simply wasn’t possible as the job was too physical and there’s a lot of responsibility with minding children.

“The rheumatology nurses were (and are) amazing. The consultants don’t have as much time to spend with you, but the nurses are not as rushed and are able to really zone in. They understand how you might be feeling and are very astute at picking up on things. I also find it’s useful to keep a diary of your symptoms as otherwise you can get muddled. I also ask for a copy of all the reports from my rheumatologist so that I can query anything that needs to be addressed.”

“[Arthritis Ireland] has honestly been my saviour.”

 

Stumbling on a trustworthy source

“The real breakthrough came for me when the steroids started to wear off and I was in pain again. I had a sense of doom and panic. I’m quite resilient, but this really shocked me, so I turned to Google and found Arthritis Ireland. I remember being really upset on one particular day, so I rang up the Arthritis Ireland helpline. The lady on the other end of the phone was so reassuring and supportive. She was just terrific in helping me to feel better again.”

“Finding them has honestly been my saviour. I enrolled on the Living Well with Arthritis course and I found it to be absolutely brilliant. It covered everything that would help anyone to become healthier like setting goals, fitting in more physical activity and eating well. We learnt how to read labels and I was shocked to discover my portion sizes had been way off for years.

“Also, the camaraderie in the group was amazing – I benefited so much from other people coming in to share their tips and their stories. There is a bond there from the very beginning because you have so much in common. The experience encouraged me to then go on and enroll on the Be Active with Arthritis course, where I discovered that I needed to ramp things up a little with my physical activity. 

“Previously, I hadn’t really been getting my heart pumping and, although we had always been big walkers, I finally learnt to push myself a bit further. Myself and my husband now walk for an hour a few days per week and, when meeting up with friends, I always suggest a walk followed by coffee. I also added in muscle work, including exercises to help strengthen my back and tummy, which I try to commit to three to four times each week. I’m hugely in favour of keeping my strength up and exercising to stay well. I also learnt from Arthritis Ireland that regular housework counts too!”

“Pacing myself is so important – I know I’m not able for social events that last past about two or three hours.”

Finding what works for you

“I can sometimes get a flare of the blue, such as very sore hips. It’s completely unpredictable and always takes you by surprise. The condition forces you to come up with your own solutions. A couple of months ago I had a terrible fright as everything seized up. My fingers jammed so I went to my consultant. He then put me on a new drug and it worked thankfully. But it can still be very frightening. I would sometimes ring my sister and, if I’m all seized up, she’d tell me to get up and get out moving, and that really does help, even though you might not feel like it.

“Pacing myself is so important. I know I’m not able for social events that last too long. At that stage, I’ll often give my husband the nod and we’ll leave! Also, If I’m tired at home, I’ve learnt to just go sit in the chair and block out everything by closing my eyes. I then take thirty or so deep breaths; I learnt that skill from the Arthritis Ireland course and it really makes a big difference. It’s all about stopping what you’re doing and giving yourself that bit of time that you need to re-energise. Then you’re able for the next part of the day.

“Things can come on suddenly – for instance, right now I have a lot of pain in my coccyx. I’ve come up with a solution by rolling up a blanket and twisting it, so that there’s sort of a hole in the middle of it, and then I’ll sit on that and I’ll take it in the car with me to take the pressure off my joints.”

“[My husband] came up with the brainwave of carrying an ice block on our walks.”

Never feeling totally alone

“I would credit my husband, Robert, with being a huge support to me, as well as my two sisters (who both also have RA) as they are all very understanding. Other people might say, ‘But you look so well’ and they don’t really realise that this is an actual disease I have. But my husband is great. He’s the one that came up with the brainwave of carrying an ice block on our walks. My feet were giving me an awful lot of trouble, but now we stop after a couple of kilometres, cool the swelling on my feet and off we go again. 

“Robert works for himself so he’s fairly flexible with his time and can come for a walk with me. He would often have one hand out so I don’t trip or fall, as I can’t afford to, especially where the road is rocky or uneven. We walk around the farmland of beautiful Kilruddery where we live. We also walk a lot around Wexford, where we have a mobile home. 

“Robert’s support has been crucial – he understands completely. He’d know about me being off balance sometimes, and all about the tiredness. It doesn’t bear thinking about, what life would be like if he wasn’t here as a support. For instance, he does all the hoovering now and we take turns with other jobs, such as the cooking. Although, I did have to remind him the other day to stop tightening the lid on the water bottles - so even he forgets what it’s like for me sometimes!”

“I feel stronger, more confident and more positive today, and I’m using muscles that I haven’t used in quite a long time!”

Raising awareness to create better understanding

“I truly believe that the more people that read about the realities of arthritis – even the medics – the better the chances that it might open people’s eyes to the invisible nature of this disease. I’m so aware now that people are suffering, but you mightn’t necessarily see it. 

“In terms of the future, I don’t go there. I simply live day-to-day, and week-to-week and I don’t think really about what’s down the road. I’m fine now and I’m content and happy. I have my few things going on, such as sea swimming, playing the ukulele, reconnecting with old friends from the past, building up new friendships and volunteering. I feel like my condition is taking a backseat these days. At one point, I was totally consumed by it, but now things have settled down.

“I feel stronger, more confident and more positive today, and I’m using muscles that I haven’t used in quite a long time! My advice to others in a similar position? Take time, don’t panic, challenge yourself and take whatever help and services going, including tying in with your pharmacist. But start with the Arthritis Ireland website, where you’ll find a goldmine of personal stories, podcasts, webinars, videos newsletters and blogs. It’s a great comfort knowing that you are never alone with this.”

 

Click here to read Eileen’s essay entry into the Edgar Stene prize 2024

 

Eileen’s top tip for storing medication

“I find that all the boxes for meds take up lots of room in the press so I ask my local pharmacist to give me those little plastic bags for medications and, of course, I firstly make sure they have the right label on them. Then I store them in a make-up bag. Then, if we’re going away for a night or two, I just take the make-up bag, along with a couple of solpadine or ibuprofen (which I don’t always need) so it’s a great space-saving way to store your meds.”