In pain from her early years – the woman who made the most of it

I was born into a family of 16 children, 6 girls and 10 boys (one brother, Thomas Patrick, died when he was seven months old) in the rural village of Ballinaboy in north Co Mayo.

I enjoyed the freedom and joy of living in the countryside surrounded by my family and friends. When I was five years of age my parents noticed that I was very tired. They brought me to the local doctor, who diagnosed rheumatic fever and after this, I had a lengthy stay in hospital.

I returned to school thinking that things would be the same. I was constantly tired and could not play with my friends as I had no energy. My hands and neck were extremely sore and stiff. I had to take regular medication for severe pain. I continued to attend primary school despite the fact that I had so much pain.

When I was 10 my fingers and ankles were swollen and my neck was extremely stiff. My parents brought me to see the doctor again and he referred me to a consultant, who diagnosed juvenile rheumatoid arthritis. In rheumatoid arthritis the immune system attacks the joints. The attack can go on for a long time or come and go. If left untreated, it can cause severe damage to the joints.

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Flare-up I was admitted to Merlin Park hospital, Galway, for many weeks, where I received physiotherapy and treatment for my arthritis. The rheumatologist there said I would grow out of it, because it was just a bad flare-up I was going through. However this didn't happen.

I attended an all-Irish secondary school, Coláiste Chomáin in Rossport, Co Mayo. While in my fourth year, I had extreme difficulty writing and had a lot of pain. I was referred to a consultant orthopaedic surgeon in Merlin Park, Galway.

The consultant told my parents I needed corrective surgery. It came as a bit of a shock to my parents as I was only 15 years at the time. He reassured them it was going to be a success and not to worry. I had the surgery on my right hand, returned to school and now was able to write without experiencing pain. Little did I know that this was going to be the first of many surgeries.

I got on with my life, getting out socialising and having fun as any teenager. After I completed my Leaving Certificate I started a training course in Ballindine, Co Mayo, in computer applications and office skills. It was my first time away from home. Even though I missed my family, I enjoyed my independence and social life, but throughout this time I battled with pain in my joints.

Near the knuckle Over the years I have had about 40 surgeries, including knuckle replacements and both hips, knees, shoulders and elbow replacements as well as neck and foot surgeries. Now a wheelchair user, the Erris branch of the Wheelchair Association was – and still is – a great help and support to me. Over the years I represented them on the regional and national executive councils.

I joined the Centre for Independent Living Mayo and they provided me with a personal assistant who greatly enhanced the quality of my life. This was such a necessary provision for me, as without the support of people to help with independent living (including supports with personal needs, transport and mobility) I would not have been able to live my life to the fullest.

I was able to work with the Centre for Independent Living as a leader co-ordinator, work which I really enjoyed as I was supporting people with disabilities to live independently. I also joined the Mayo branch of Arthritis Ireland.

Benefits of a big family Being from a big family has its benefits. If any of my family knew I needed assistance, they were always there to support me in achieving my goals including pursuing several courses and achieving my dream of going to the Institute of Technology in Sligo, where I studied social studies.

Throughout the years, I kept diaries. It was a comfort to be able to put my feelings on paper. The idea of turning my diaries into a book came about later. Even though I had all this information in handwritten diaries, I had to think about what I would share with the public and rewriting those memories brought me back again and made me realise how difficult some of the periods in my life had been.

Staying mentally active Dealing with a disability and fighting my corner for supports so that I could live an independent life has also been a feat at times. I have tried to keep positive and my friends, and people I have met through my life in different ways, have uplifted me and given me courage.

Despite living with this ravaging disease and having to spend a lot of my life on metal wheels, I am a happy person. Above all else, I believe in moving forward all the time. It is very important for me to be active as it distracts me from my pain.

To stay mentally and physically healthy I have to work harder than most because I don’t cook and depend on supports to put together healthy meals.

I am aware that keeping sugary and fatty foods and salt to a minimum and eating fruit, vegetables and white meat is very important and also keeping physically active and getting regular physiotherapy and hydro-therapy.

To stay mentally active I feel that I need to have goals, to be around positive people, to keep active and “out there”, participating in what’s going on in the community and to be happy with what I have got.

I have been busy with my book ( I want to get it out there as hopefully it will encourage others who have to live with arthritis).

I also currently present a programme, Community Matters, on my local radio station every Friday, where I get to interview many interesting people from the community. This I find really fascinating as everyone has a story to tell.

Lobby politicians

I am on the Erris Community Health Forum, where we lobby politicians on health issues that concern local people. I completed Fetac Level 5 Healthcare Support with Mayo, Sligo, Leitrim Education Board and Nursing Studies with Our Lady’s Secondary School, Belmullet. I hope to put the skills I learned on these courses into practice.

Other things I keep busy with include completing computer and office skills courses, doing other courses with the Mayo Recovery College, Castlebar, and being a committee member of the Mayo branch of Arthritis Ireland and board member of Irish Association of Supported Employment (IASE), Mayo CIL and Glenamoy Social housing.

I recently trained as an ambassador with Arthritis Ireland and I now give presentations to groups on living with arthritis and the work of Arthritis Ireland.

I am currently lobbying with the local branch for the appointment of a full-time rheumatologist in Mayo General, so that people with arthritis don't have to travel to Dublin or Galway for treatment. They currently have a visiting rheumatologist from Manorhamilton for 11 hours a week, but this is insufficient for the 26,000 people currently living with some form of arthritis in Mayo.

I also facilitate "Practical Self Advocacy" and self-care programs in conjunction with Mayo Centre for Independent Living and Disability Federation of Ireland

And there's more I am now in my mid 40s and even though I cannot see a cure for rheumatoid arthritis ahead, I am positive that I can continue to live a full life and have confidence in a health system that is managing to control my pain.

If I had a million euro to spend I would not want to change my life. The originator of this quote is not known, but it works for me. “The happiest of people do not have the best of everything. They just make the most of everything that comes their way.”

Ann Marie Healy's book Be Yourself: My Diaries is available at choicepublishing.ie or amazon.co.uk. It is also available in local newsagents in Co Mayo.