Yes she can

So young, so much pain, so much done:

The Irish Times - Tuesday - Health - - Front Page - Ann Marie Healy 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.

Iwas 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.

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.”

De­spite liv­ing with this rav­aging dis­ease and hav­ing to spend a lot of my life on metal wheels I am a happy per­son

PHO­TO­GRAPH: KEITH HENEGHAN/PHOCUS

Ann Marie Healy at her home in Gle­n­amoy, Co Mayo.

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