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9th February 2017
10:37am GMT
"What did I do to deserve this?"
I was thirty-nine years of age was I was diagnosed with arthritis. It was a real shock, not what I was expecting at all. I had a rash and night sweats. I thought it was just a virus. I was diagnosed with Adult-onset Still's disease, a rare type of inflammatory arthritis that is similar to rheumatoid arthritis. It shares characteristics of childhood arthritis, but it begins in adulthood. Inflammation may affect a few joints at first but may advance to include more joints over time which mine has.
I was so angry, so, so angry when I was first diagnosed. Why me? What did I do to deserve this? It couldn't be true. It couldn't be real. They must have got it wrong. But they hadn't, it was true, and I had to find a way to cope. So, I did. I went to counselling, and I talked it through. It allowed me to deal with it – rationalise it in my head so I could accept it and make the most of my life. I try now to stay as positive as I can. I have to for my family.
At the moment, I'm on a waiting list for a double-hip replacement. My other joints I can manage, but my hips are a lost cause. I can barely walk, I find it hard to sit, drive or do anything normal. I'm in agony all the time. It's chronic pain, twenty-four-seven, and no matter what medication or steroid injections I take, nothing gives me relief. So, I was referred for a double-hip replacement last February. I've been told I could be on the list for up to two-years.
"Sometimes I feel like a failure as a mother"
I have two young boys, Ben is eight and Conor is five. It's hard, sometimes I feel like a failure as a mother. It feels like I'm all the time saying no to them, I can't do this and I can't do that. As a mother, you're meant to be wonder woman. And I know it isn't in my control but sometimes those thoughts creep in.
They are my life. I'd do anything for them, without them I don’t know where I would be. They're so loving, they have so much love to give. Sometimes, they ask me what can they do – and I say to them "all I want is a hug" and it is better than any medication on the market.
"They deserve a mother and wife who is there full time"
Children are a great distraction! They make me focus on things other than my arthritis. Without my children I know I would be on the couch, in my pyjamas giving up on life. They are what I get up for everyday. I have to stay as positive as I can for them and my husband. They are full of love and energy; they give me hope and determination. I must keep fighting on for them, not just for me. They deserve a mother and wife who is there full time, who can look after them and give them everything they need and deserve.
I have the best husband in the world. I'm truly blessed. But we are all human! He gets the short-end of the stick sometimes. I just can't help it. I'm in pain, I'm tired, I'm frustrated, and he is there to bear the brunt of it. They always say you take things out on the people closest to you and it's true. But we work well together as a team, we know each other well, and it works.
"A smile and nod hides a lot of pain and misery"
My close friends and family are very good to me, they understand. They get to see the real side of me and the arthritis. But we are all guilty of only showing people what we want them to see. The parents at the school-yard all think I'm fine. I often hear "Sure aren't you grand, you're walking around and everything." A smile and nod hides a lot of pain and misery. Arthritis is invisible, it is not like a broken arm – it's hidden. So, it is hard for people to understand the chronic pain I am constantly in. How hard it is for me to do the simple things like pick something off the ground. If something falls at home, I have to get a chair to try and reach it or more often than not I kick it out of the way and let my husband or one of the children pick it up later.
"Going private is a financial chance we just can't take"
My husband returned to college, so I am the main bread winner. I do have a medical card, so I don't have that burden. But there are so many other costs that people don't know about. My physiotherapist wanted me to join a leisure club and go swimming, to build myself up and give me relief, that's a cost. I can't buy cheap and cheerful anymore - the shoes from Penny's don't have the support I need. All these extra-costs add up. Being sick is expensive.
The operation will cost €8,200, but it is money we just don't have. And if I was to go privately there may be a complication, then who knows what the final cost would be. It's a financial chance we just can't take.
I have a fantastic employer. They never question me or put any pressure on me. They never make me feel worse about my disease which is so important when you are sick, to have that security and reassurance. I work in the Marian Pharmacy in Ballyphenane, and being a pharmacy, they understand sickness. But they don't have to be so generous and they are, it means the world to me. I hear horror stories of how others are treated, and I know how blessed I am to work there.
"I have no quality of life, I exist"
I have no quality of life, I exist. The simple things are mammoth tasks for me. I am only forty-two years old, and I feel like a ninety-year-old woman. My life is passing me by, and there is nothing I can do about it. I feel so helpless. The pain is horrific, and I can't do anything about it. I have to put up with it until the HSE decide I am important enough to be operated on. How can they stand-by and do this to people? Waiting list, after waiting list. We aren't numbers. We are real people with real lives.
Arthritis Ireland are a great support. I attended one of their Living Well with Arthritis self-management courses a few years back and it helped me no end. It gave me back my confidence. I no longer felt I couldn't do things, I saw a light. And I made friends from the course that have been brilliant, someone you can ring and chat to, who really understand what it is like to live with arthritis.
"We can march for our water rights, why can't we march for our health?"
People need to know that arthritis is not a disease for older people. There are so many people, young people like me, living with arthritis. I have a number of friends who won't speak about their arthritis, who are too embarrassed. We need to change this, people need to start taking on board that it is not just a few aches and pains and it is not just a part of getting older. It is so much more than that. I'd tell anyone out there who is living with arthritis don’t give up. Your life is your own, make the best of it.
To the Health Minister I would say this. Take action. We are fed up of all the talk, all the games. Take the action that is needed to address this problem once and for all. We don't want a knee-jerk reaction. Think of the bigger picture; make this a permanent solution - not a bandage.
The media coverage has been great, but we need to keep the pressure on the Government. We can march for our water rights, why can't we march for our health? People are in despair, in pain and sometimes dying before they get the help they need. The Irish people need to band together and make this a problem that isn't going to go away, let's take action. It affects us all.
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