The health of the Irish people and its health system are facing a significant challenge from the rising tide of chronic conditions such as arthritis, diabetes and heart disease. Taking arthritis as an example, high-tech biologic treatments have been extremely effective in stopping joint damage in its tracks but – as no cure exists – patients still need to manage their own condition outside of the clinical setting and the impact it has on their lives such as pain, fatigue, social isolation and loss of employment.
This is where the Arthritis Self Management Programme – delivered nationwide by Arthritis Ireland over the last 7 years – makes a big difference. By complementing clinical treatment with education and training in problem solving and action planning, it enables and empowers patients to live happier, healthier lives.
Download the report & watch the video here: http://www.arthritisireland.ie/go/information/self_management/the_case_for_self_management
By Peter Boyd
I was 27 when I was diagnosed with fibromyalgia. An invisible illness of chronic pain, chronic fatigue and stiffness, it was a difficult condition to come to terms with. 18 months of clear blood tests, x-rays and countless doctors’ visits meant that at first I was just happy to have any kind of diagnosis. A week later, however, I had more questions than answers because I couldn’t explain my situation and no one could see my pain.
Three months ago I was diagnosed with arthritis. Initially it was called psoriatic arthritis but we’re leaning more towards rheumatoid arthritis now. All I know it is another auto-immune condition chipping away at me through pain, fatigue, innumerable symptoms and invisible impacts.
For two full years, before every appointment, I waited for my bad news and confirmation that I was getting worse. I felt trapped by my physical symptoms and beaten down by the emotional onslaught. It’s been said that ‘in space no one can hear you scream’. Well, confronted by fibromyalgia and its symptoms for two years before a diagnosis, no matter how hard I screamed no one saw, understood or heard the fatigue and exhaustion I was feeling.
I’m 30 next month and can’t wait to leave my twenties behind. Despite the successes I’ve had in the last decade, my life now is very different from what I had mapped out for myself. I no longer work due to fibromyalgia and arthritis; I struggle each month to maintain payments on my home due to my fibromyalgia and arthritis. From training nearly every single day, I no longer run and even a fast walk is sometimes too much for me. Again this is 100% due to my fibromyalgia and arthritis.
This is where the support of Arthritis Ireland steps in to help me. Just after my fibromyalgia diagnosis I took part in a Living Well with Arthritis course. This self-management course introduced me to others with the same problems AND who were the same age as me. I was no longer so isolated and I had a massive support network too tap in to.
Without the support of the employees of Arthritis Ireland, the members of Arthritis Ireland, the members of the Young Arthritis Network and the courses, seminars and events they all contribute to, I was headed to a very dark place. That is why fundraising is always required but crucially is also always appreciated. Your money will help others, from tots to Grannies, teenagers to Granddads and what’s more they’ll be so appreciative of the helping hand your fundraising provides.
I know I am.
You can follow Peter’s blog at http://fibrofella.wordpress.com/
By Elaine Molloy McEntee
I was just a baby (18 months old) when juvenile rheumatoid arthritis entered my life. 39 years and six joint operations later, it is still with me. I can honestly say I’ve come through a lot but it is pride that I feel more than anything else.
I spent most of my childhood in Temple Street and the Mater Hospital attending the lovely Dr. Barry at the rheumatology clinic and in the CRC Clontarf. When I first met him, I was so frightened and clung onto my mother. I didn’t want anyone examining me.
It might sound silly but as a child I remember feeling quite embarrassed about having arthritis and I didn’t ever talk about it. I was never really able to take part in the normal activities that my classmates would’ve taken part in and I’d miss school from time to time. My friends just thought I had problems with my legs.
The pain of it sometimes was so horrendous that it completely took over and stopped me from doing anything. Even having blankets over my legs was sometimes too painful. My legs couldn’t take the pressure of the weight of them. I remember being in hospital and the nurses putting wire cages over my legs and then the blankets on top, so that they would have to bear the weight. It was awful.
I remember when I was a teenager I was going out to a nightclub with friends but I’d been going through quite a bad flare and I needed a walking stick to walk. Some of the girls suggested that I leave the walking stick behind. They said it sort of casually but I knew they were embarrassed by me. That was very hard to deal with. Some of those people I have had to leave behind but other friends have stuck with me along the way. It was only really in my late twenties-early thirties that I began to really talk openly about my arthritis and how it affected me because up until that point I think I was just focused on fitting in and trying to be just a normal person.
Since then I have had three hip replacements, one shoulder and two hands done. The right shoulder definitely took the longest to recover from. It was six or seven years before I had full mobility back in it. Recovery after surgery was incredibly tough and there were certainly times that I felt a lot of anger and despair about why this had happened to me. You definitely have your dark days with arthritis even though I try to be as positive as possible. I think that’s really important; that you make the most of yourself no matter what. You can’t let your arthritis get on top of you and I try my best to make the most of myself, in every aspect of my life. You need to do that even for your own self-respect.
I always wished that Arthritis Ireland had been around when I was a child because I always felt I was living alone with juvenile arthritis, and today you see that there is great support for kids where they get to meet each other. As a member of Arthritis Ireland for a number of years, I found just reading stories from others to be a great support. You pick up the paper and you see there is a woman who is similar in age to you, going through something similar. It makes you feel that you’re not alone and that’s so important. I’m also grateful for all the support I’ve received from the doctors and health professionals over the years, especially in Cappagh Hospital where they are just always there for you. They have been brilliant.
I’m now 41 this year and I feel very proud of all I have achieved. I still have my tough days as well as my good days and I think that is always going to be the way when you have arthritis. I’m so grateful to have had the support I did along the way and I am delighted that today there is even so much more support available through Arthritis Ireland for kids and young adults with arthritis.
By Anne Marie Gannon
When I was diagnosed with rheumatoid arthritis (RA) 17 years ago, I didn’t know where to turn or what to do. I had been feeling a lot of pain and fatigue, and I found that I wasn’t able to use my hands properly.
I went to my doctor and initially they told me that it was most likely due to depression, but I kept getting worse to the point that I couldn’t even walk up or down the stairs. At one point the inflammation was so severe that the tendons in my thumb snapped. I was in unbearable pain and I felt like I was being crucified.
The pain and inflammation spread from my fingers and hands to my knees and shoulders. I felt like was walking on nails at times and I thought to myself that there was no way that this could just be due to feeling down or depressed.
Eventually my GP referred me to a rheumatologist and following tests I was diagnosed with rheumatoid arthritis. By that time my shoulder was giving me a lot of trouble and x-rays showed that the RA had practically destroyed the entire joint, boiling it up and breaking it down, and it had to be replaced.
I started on biologic treatments and that made a difference to me for a while. But rheumatoid arthritis is a degenerative, progressive disease that gets worse rather than better, and the newer drugs tend to slow it down rather than completely cure it.
As well as the physical effects it also had a major impact on me mentally and emotionally. I stopped socialising with friends and my mood was very low. I didn’t know where to turn and found that nobody really understood what I was going through, not even family.
It was at that point that I saw an ad for Arthritis Ireland and decided to give them a call. I spoke to a woman on the phone who was very reassuring. It was a great comfort to me to discover that these feelings were normal for someone with arthritis and that I wasn’t alone.
From that phone call I signed up to take a ‘Living Well with Arthritis’ self-management course with Arthritis Ireland. There I learned not only about the impact arthritis has on every part of your life, but also the things that you can do to manage it, such as pain management techniques, creating weekly plans and other problem solving skills.
This course made a massive difference to my life and how I thought about RA. It made me realise that there were lots of things I can do to help myself and, while I still have bad days, I now know that there is light at the end of the tunnel.
More and more people are being diagnosed with arthritis all the time and feeling, like I did, alone and helpless. These Arthritis Ireland courses change that perception and people begin to realise that there is something that they can do.
Please ensure that people continue to see the life-changing benefit of these courses by making a donation today by clicking the button below.
By Fiona Keegan
As we know there are many different types of arthritis – over a hundred in fact. Our
Helpline Volunteers continue to keep themselves updated on the many different types and it is always interesting for us to get a call from someone having been either recently diagnosed or living with one of the lesser known forms of arthritis.
Callers often start off by saying ‘this may be a silly question but’……. . For us there is no such thing as a ‘silly question’. In fact it is often the ‘silly question’ that can open up the most interesting of conversations! Of course you don’t need to have a question to phone our Helpline. A chat (and perhaps some laughter?) with someone who is also living with arthritis can be of huge benefit to both the caller and the Helpline Volunteer!
Here are a sample of the type of calls we get on our Helpline and how we might respond:
‘I have had a knee replacement fitted 5 years ago, however I had to have a revision fitted 2 years later due to pain while walking. Unfortunately pain persists and my knee cannot carry my weight and I experience severe pain having walked a short distance. My weight is normal and I am doing all my exercises. I don’t want to be taking pain killers for the rest of my life and am looking for a solution to my problem….’
‘There are a number of things that may help in reducing your pain. You may find relief from either hot or cold packs. Some people prefer to reduce inflammation by using cold therapy, others prefer to use heat to warm up the muscles around a joint. It may be worth talking to a physiotherapist who can assess if the exercised your are doing are still the most effective for you and whether it may be time to change your exercise regime. It may also be worth approaching your GP with specific questions about your pain after keeping a diary of when pain is at its worst. In this way they may be able to tell you what is the best time to take medication to reduce pain. Your GP or Rheumatologist may be able to prescribe medications other than pain killers. The range of medications that can be used to treat arthritis is huge and they are much improved in their effectiveness and success. We will send you a copy of our booklet ‘Coping With Pain’ and details of our ‘Living Well With Arthritis’ Programme as well as details for the Walking Group in your area. Even though it is a struggle to walk any distance at the moment, these Groups are led by people with arthritis and are trained to include everyone regardless of the distance they can walk. These groups also provide a social outlet and an opportunity to meet others with arthritis’.
I am 23 years old and I have been recently diagnosed with Psoriatic Arthritis. I have tried 2 different DMARD so far and have had joints aspirated and injected and I have been hospitalised twice in the past 5 months. At first I really struggled to understand this diagnosis and still have days when I feel very restricted unable to do things like I used to and I have so many medications to take. I wanted to enquire about the Living Well With Arthritis Course. Do you think I would benefit from it?
‘It is not easy to get a diagnosis of arthritis when you are so young however there is a huge network of support available to you. There is the Arthritis Ireland web-site and a Young Arthritis Network page on Facebook. This is a great source of information and support as you can be instantly in contact with another person around the country who is living with arthritis. The Young Arthritis Network is solely for people aged between 18 – 40 so there are often similar questions to do with careers, exercise, relationships etc. being discussed. The Living Well With Arthritis Course would benefit you enormously in that it equips you to become a self-manager of your condition and hopefully improve your overall sense of well-being. We will forward all details of how to sign up for the course along with information on Psoriatic Arthritis and other booklets on Coping with Pain and how to get the most from your doctor’s visits etc’.
Whatever type of arthritis you are living with from the most commonly diagnosed to the ‘never heard of that type before’ – we are here to help and we welcome your calls so please get in touch by calling 1890 252 846.
By Conor Darcy
When I was 7 years old I was diagnosed with juvenile rheumatoid arthritis. Before this I was a really active child like every 7 year old should be. As the disease got worse I would become more and more determined to be as active as possible, but unfortunately sometimes it was just impossible to be active at all. From playing football for four hours in a day to bed-ridden the next, the constant transitions from pain to games and back again made life very unpredictable.
Around 2005 I was admitted into hospital for an indefinite amount of time, the first time this had happened since diagnosed in 2001. With symptoms becoming progressively worse and more symptoms occurring which wouldn’t be generally associated with JA it was unsure completely what was happening. Eventually I was diagnosed with Macrophage-Activation Syndrome a rare disease that would be associated with JA. Once the problem was discovered I was treated by a great team of doctors and was on the road to full recovery.
After this my overall quality of life improved and I vowed to always be as active as possible. I became a member of three extra sports teams rather than my previous one. But with this I always wanted to push more and do things I would have never been able to do prior, even on my best days.
So I decided to reach for the sky, and back again! A skydive for Arthritis Ireland was the ultimate ambition. Before I was unable to do things that were everyday occurrences, now I wanted to do things that were once in a life opportunities. In July 2011 I decided to take the Jump for JA. The adrenaline and the sense of accomplishment in doing it is an unbeatable feeling. By doing the skydive I proved to myself that with determination and endurance, JA - no matter how much it tried – would never take control of my life.
I do believe everyone should stay as active as possible. If on days you feel unable to run you should still walk. If on days you feel you unable to walk be determined to walk tomorrow! Everyone should aim to their limits and beyond them, that’s why if you feel you could jump why not out of a plane? Why not jump for JA?
With a Jump for JA you will be helping to change the experience of children with this debilitating condition. Click here if you would like to find out more about taking a Jump for JA.