'Writing helped me through my dark days with rheumatoid arthritis' – author Sinead Moriarty

In May 2015 my Dad dropped dead of a heart-attack on holidays in Spain. My siblings and I flew out to be with Mum and help organise getting the body flown home. As I went to bed that first night in Spain, I noticed that my left knee had blown up. I thought it was air pressure on the plane or maybe I’d twisted it. I had a lot of other things on my mind, so I ignored it.

In the weeks and months after the funeral I began to feel really unwell. Terrible night sweats, no appetite and a tiredness that no amount of sleep could help. I was freezing all the time during the day and my eyes were constantly irritable. My knee continued to remain swollen.

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I presumed I was getting the menopause. I went to my GP to get blood tests and planned to start HRT. Three days later the GP rang and said my blood tests were off the charts and she had made me an urgent appointment to see a rheumatologist

I had never heard of a rheumatologist, but I duly went along. I still wasn’t particularly worried, I’ve never been ill and have a fairly healthy lifestyle, I presumed he’d give me a pill and I’d be as good as new in no time.

He looked at my blood test result, and then at me and I was admitted to hospital then and there. I began to go downhill fast. After a week of non-stop poking prodding and over 40 blood tests, I was finally diagnosed with rheumatoid arthritis (RA). I had no knowledge of what this meant so I googled it and it read:

“RA is a chronic autoimmune disease that causes severe inflammation of the joints. There is no cure”

As I lay in hospital staring up at the ceiling on that long dark night, I remember thinking, “This is what it feels like to be terrified”. I finally understood the true meaning of the word terror.

Sleep evaded me as my mind tried to process what was happening. I didn’t understand how a ‘healthy’ person could suddenly be so unwell.

As I lay in that dark hospital room I panicked. What did having RA mean? What was my future? Would I die? Would I be crippled for life? Would I be able to look after my kids? Would I have chronic pain for the rest of my life? Would this ruin my family’s life?

I began to google and my fear grew worse. I went from never having had a panic attack in my life, to having them all the time. Big ones, long ones, frightening ones.

I seemed to have a very aggressive form of RA. Every consultant – and there were many – who came into my hospital room muttered ‘oh my goodness’ and ‘so aggressive!” when they looked at my chart.

The word aggressive became my enemy. I still feel sick when I hear the word. It turned out that not only did I have a chronic autoimmune condition, I had a very aggressive form of it.

When RA flares up, it affects your joints. It affects different joints for different people. For me it was my knees, elbows and wrists. During a bad flare-up it feels as if someone is holding a naked flame to your joints. The pain is bad, very bad. You can’t even lift a spoon. You literally cannot move. Even the weight of a sheet on your raw joints is agony.

The consultant said “we need to fight fire with fire” they gave me the highest doses of medicine and injections. Methotrexate is a chemotherapy agent used to fight RA. I took it once a week and it made me very nauseous. I also injected myself with biological drugs every week.

The drugs suppress your immune system, so you are much more susceptible to viruses, bugs, flues, pneumonia etc. When you do get a bug, your arthritis flares-up – it’s a bit of a vicious circle.

But despite all of the drugs, my left knee continued to flare up. I then had 10 steroid injections into my knee (one a week). No difference. So, I was put on high doses of oral steroids. I remained on them for almost a year. At one point my local pharmacist took me aside and asked me if I was sure that the high doses of meds I was on were correct. She looked extremely concerned. I nodded, unable to speak because I wanted to weep. Steroids are called medical heroin because they are so effective. It is also extremely dangerous to be on them long-term. But I couldn’t come off them.

They are awful. You can’t sleep and they make you tense and stressed. The best way to describe it is that it’s like someone following you around all day long while scraping their nails down a blackboard. You feel on edge, shaky and angry all the time.

I spent hours in waiting rooms, having treatment, consultations, watching experts shaking their heads and using the words aggressive, unusual and unfortunate over and over again. I spent a lot of time weeping behind potted plants outside consultant rooms. I panicked, I paced up and down in the wee hours of the morning, I cried a lot and I worried all the time.

The loneliness is very challenging. No matter how wonderful your friends and family are – and mine really are – you are alone with your illness and your fears and concerns. At 3am it’s just you and your thoughts. You and your mind conjuring awful outcomes. You and your pain.

No one can possibly understand how you feel, you barely understand it yourself. You live inside your head as you try to process the shock, and come to terms with a lifelong condition. It’s a very lonely place.

The steroids wrecked my head, but allowed me, in the main, to be mobile. But every time I tried to come off them, my knee flared-up again.

I sought out advice from everyone. I met and spoken to the most wonderful people. Friends of friends, people’s mother’s in law, brothers in law, colleagues, cousins …anyone who had RA or knew anything about it. I researched, I studied, but in the end no one could understand why all of my joints were reacting to the medicine except my left knee. Unusual, aggressive, unfortunate….

The only thing left to try was a radio synovectomy. You go to the nuclear department of the hospital and they inject radioactive material into your knee to burn the swelling away. I desperately wanted to avoid it. I was terrified it would make my knee worse or cripple me. It’s done very rarely in Ireland, but more commonly in France.

So I went to France to talk to a rheumatologist there. He said it was my only option. I came home, took a deep breath and booked in for the procedure.

It worked! Two years on, I have my life back. I was able to get off steroids and two months ago I finally got off Methotrexate. I still inject myself, but I feel good again. I feel as if I have got my life and myself back.

I lost myself in those first few years after my diagnoses. I was nervous, frightened and overwhelmed. I hated not being able to go for a walk with my kids.

I hated being utterly exhausted all the time. I felt old, miserable, crippled and useless.

I tried to do mindfulness courses and meditation, but in the end, I realised that writing is my happy place. So, I began to write a new book and it saved me. The only time my mind stopped agonising over RA and the future, was when I was writing.

I feel blessed to have a job that I love. Writing is where I am at peace and I know that I can go there when I need to.

I am also blessed to have a gorgeous family and lovely friends.

For a while RA shattered my confidence in life and made me wary of the future. But I think it’s vital that I learn something from this experience. I’ve accepted it and that has been a huge help. I’ve stopped asking how this happened and started asking what can I do to live the best life possible?

I take each day as it comes and am so very grateful for what I have. I know what a blessing health is and I will never take it for granted.

My advice to anyone who has a loved one or friend who has been diagnosed with RA, is to listen. Let them talk, let them admit their fears and just listen. Be kind, be patient and be thoughtful.

To all sufferers of RA, I wish you courage, strength and peace of mind.

Sinéad Moriarty has launched a campaign inviting people with rheumatoid arthritis (RA) to tell their stories of what it is like to live with the condition. A selection of these stories will be published as a book, by Arthritis Ireland. To find out more about “My RA Story”, visit the Arthritis Ireland website, arthritisireland.ie

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