Follow in the footsteps of the Pink Ladies and enjoy the benefits of Arthritis Ireland’s Walking Groups

WHEN an arthritis flare-up leaves you feeling sore, stiff and miserable, the temptation to curl up on the couch can be hard to resist.

But as the members of Arthritis Ireland walking groups have discovered, moving really is the best medicine.

Elaine Cullen certainly agrees. The 32-year-old is a proud member of the Wexford branch’s “Pink Ladies”, one of the network’s most vibrant and committed groups.

Having been diagnosed with fibromyalgia and osteoporosis five years ago, Elaine’s condition became so severe that she struggled to walk and was even forced to give up work.

However, things changed when she joined the Wexford Walking Group, a development she describes as “like taking a magic pill”.

“I couldn’t believe the difference”, she explained. “Walking is like my treatment. I keep telling myself that diabetics take insulin, whereas I take exercise. When I started in the group I was a very slow walker but I kept it up and gradually I was able to do more. The leaders are fantastic. Sometimes the pain can be so bad that my mood is affected but the group is a great support and cheers me up. Even if I’m too sore to walk, I’ll still go down there for the tea and the chat!”

Yes, while walking is the main pursuit, the post-walk bonding over a cuppa is an equally effective tonic.

It’s now three years since Rosaleen Finnigan and Phil O’Mahoney set up the group. And both women know all about the importance of keeping active thanks to personal experience.

Rosaleen, 66, copes with an unenviable combination of rheumatoid arthritis and osteoarthritis as well as fibromyalgia. And she remembers only too well the shock of her diagnosis. “The worst thing was the isolation. I had to give up work and depression set in. My husband would get me out of bed in the morning, put me in a chair and I’d be there when he came home”, she said.

Determined to manage her condition – and to help others do the same – Rosaleen got involved in the Wexford branch of Arthritis Ireland and trained alongside Phil as a walking group leader.

Hail, rain or shine, the determined ladies now meet every Wednesday evening at the River Bank Hotel in Wexford where they embark on a 40-minute walk.

Rosaleen explained: “We always make sure to warm up beforehand and do stretches to cool down. If it’s extremely wet out, we’ll do exercises to music.  We see the results very quickly and see the difference that walking makes to people’s wellbeing. We all have a laugh, we talk and it’s great fun, and it’s great to have support from people who understand your condition. Of course, anything said within the group stays within the group.”

As they cater for walkers of all abilities, co-founder Phil insists there’s “no entry criteria”.

The 59-year-old, who has rheumatoid arthritis, explained: “We welcome  people of all ages and all abilities. The worst exercise is no exercise and even if you’ve had a bad day, a walk can really help. If someone has bad pain and has to turn back after five minutes, that’s still progress and one of the leaders will always turn back with them. No matter what your pace, you’re never alone because we have a leader at the front, middle and back of the group. Organisation is important too and I always carry a first aid kit as well as spare hats, scarves and gloves so we’re prepared.”

The group’s weekly route varies depending on daylight, but its philosophy of safe and healthy exercise in a supportive atmosphere remains the same.

Rosaleen Finnigan & Phil O’Mahoney

And the enthusiastic members are all united in their belief that it’s a case of reaping what you sow.

As Phil pointed out: “It’s a big commitment but I really look forward to it. I feel it’s important to give something back and you learn so much by being with other people who have the condition. I’d feel I was letting people down if I didn’t go along on a Wednesday night, yet I’d be lost without it because it’s a huge support to me as well.”

Arthritis Ireland’s network of arthritis-friendly walking groups spans right across the country. Find out where your local group is by clicking here or call 1890 252 846.

Would you like the chance to lead your own walking group? Find out how here.

By Peter Boyd

Self-management is vital in dealing with and living well with any chronic condition. Each of us are the only ones who know absolutely everything about it. We know the day-in day-out realities of living with it. We know what works for us, we know what makes things worse and we know every test we’ve ever had done and how many different specialties have poked and prodded at us over the years.

We talk to our family members, we talk to our friends but most importantly we talk to the medical professionals about how our meds are or aren’t working. We tell them about the difficulty we had getting out of bed due to the muscle stiffness and we tell them about the Saturday night we had planned to go to the cinema with our mates and had to pull out at the last-minute. We make every possible effort to track our symptoms and map out the good and bad days. Once this tracking and preparation is done we do our best to then impart that information to the pro’s.

But as much as I wish it wasn’t true, they’re human too and might not hear every word we are reporting or they can be having an off day just as easily as anybody else can in their jobs. This makes self-management much more important and pretty much vital in managing our symptoms and ensuring we are living to the maximum of our new potential.

This has been brought home to me in the last few weeks. Planning things in almost military detail and consequently ensuring I’m pacing myself correctly have become my watchwords in living with fibromyalgia. I have numerous notebooks so nothing is forgotten and I love a good list. Shopping lists, to-do lists, lists of appointments; they all need to be close at hand so I don’t schedule too much on any given day or week. I’ve a limited amount of energy each day and I can’t afford to waste any of it. I hate getting myself into the position of being near the end of the day and having to choose between two tasks when I’ve only the energy for one.

That’s why pacing is so important. All tasks and commitments need to be spread out over plenty of time. I can’t go at things like a bull at a gate. I’ll never win my particular marathon by sprinting out in front and hoping to stay there. If I do that I’ll end up like so many competitors in real marathons. You know the ones that make a break for it on their own after a couple of hundred yards and intend to stay clear and win the race running alone. Unfortunately for these guys and girls, more often than not they are reeled in over time and consumed by the bunch. Some of these drop out completely but I can’t just give up on my race. Even if they can continue they may end up slipping further and further back and struggling for mile after mile just to finish their race.

I’ve learnt self-management skills and tools over the last four years since my diagnosis. I’ve made changes to my lifestyle to ensure that I’m not over-stretched and I can live my life to the fullest I possibly can. I don’t want my chances of finishing the race to be ruined by doing too much in too short a space of time. That’s the plan anyway but we’ve all heard the one about not practicing what we preach and I can do that myself at times.

I trained to deliver self-management courses and I love being able to facilitate people to learn the skills I have learned. What’s even better is when you see the transformation in someone from week one to week six as they begin to implement the tools they are living. One aspect of the courses is that we show how the participants can help each other out and provide peer-to-peer support. That even when they aren’t feeling great themselves they can still help somebody else get over an obstacle or two.

I’ve been thinking about this a lot this week. Even with my notebooks and my diaries I did a little too much this week. Even while delivering courses I wasn’t pacing myself very well and was on the hamster wheel and unable to put the brakes on. So I hope you can appreciate how much today has meant to me. A commitment I had for tonight was postponed last night. So for one day only the alarm wasn’t set for this morning. I had a great sleep, turned my legs over on my exercise bike for a bit and had a long shower and a shave and I feel like a new man and really refreshed.

It’s been a gentle reminder to make sure I look out for myself and how important a little bit of “me time” is in managing my fibromyalgia.

The reason I wanted to remind myself, and you guys reading this, about the importance of taking care of ourselves was a lovely analogy that came up in one of the course sessions I was delivering the other day. We’ve all heard the one about the importance of getting back on the horse/bicycle after falling off and the following is along that vein.

Imagine self-management is like driving a car. At the beginning you are bombarded with lots of information on the process, how things work and what you do in different situations. It’s difficult to do, you make mistakes and the only way forward is practice, practice, practice. After a time you get better and it all becomes natural and second nature. You are released to drive alone and you can continue doing so for most of the rest of your life unless some other factor emerges.
So how do you explain stalling a car 20 years after you learned to drive?
Truth is shit happens. You haven’t forgotten how to drive just because you stalled the car, despite what the angry, horn-blowing drivers behind you might think. It’s merely a little slip up and ensures that you focus on the process all the closer in the days and weeks that follow.
So metaphorically speaking I stalled my car this week but I still know how to drive and it’s time to get back on the horse!! Or words to that effect 🙂

If you would like to share your story about living with arthritis, please get in touch by emailing communications@arthritisireland.ie.

By Veronika Kapsova

Me in my Arthritis Ireland t-shirt

I have been training since last November, shortly after I got out of the hospital and back on my feet. It was very hard as I was in constant pain and as my new medications were still quite new and hadn’t kicked into the body properly, it took a little adjusting. I was careful to take it easy and to really take one step at a time so as not to do too much. I found that the little things that I was doing were making a big difference.

For the past few months, my training has been back to full swing concentrating on strength, high resistance and cardio. I am training for the Mini Marathon with my friend Emma and sometimes other friends join us. Training together helps make us stronger and pushes us to reach our own personal goals.

At the moment my training usually consists of 10km runs, cross training, arm strengthening, Tae Bo, some tennis and more. I try to work out up to 6 days per week if I’m not sick and I usually take one rest day per week.

In the past 2 weeks I haven’t been able to train every day or stick to my sessions with the other people I exercise with as I had ongoing migraines and was feeling constantly sick. I also had joint pain that flared in my arms and knees. I stopped training for a couple of days but tried swimming instead. I got back training again for a few days but had to stop due to the pain I was feeling.

It is not only the pain that was affecting me, but also I am in college at it is a really busy time at the moment. I had practical exams at the end of March followed by written exams in April/May. Every day is really busy. I try to exercise after college and might not get home until 10pm. With assignments it could be past midnight before I am finished. Time management is really important as sometimes I feel like I should exercise but I know that my college work will suffer. If I chose my assignments, then my training will suffer. I have to work hard at balancing the college work and my fitness. My family tell me that sometimes I don’t know my limits, but they are really supportive of me and what I am doing.

Taking part in running events is a really big motivation for me. The first run I did really helped me to reach my personal goals. Since then I have used them as motivation to keep training. I am managing something that I always thought would be impossible.

Being active really helps me ease off and de-stress. I also find that things like Yoga really help me.

I have really learned that with the correct motivation, everything is possible and I can achieve anything I want. Moving is definitely my best medicine.

Here are some helpful tips to help keep you motivated with your own exercise.

1: Set yourself a goal – Why not sign up to take part in the mini marathon on June 2^nd and raise money for Arthritis Ireland. Stick your registration letter on your fridge, or somewhere you will see it every day as a reminder that you are going to do this.

2: Start slowly – Don’t run before you can walk! Why not join an Arthritis Ireland walking group in your area. Build up the intensity and distance of your walks slowly. Seeing your achievements will really motivate you.

3: Get a Training Buddy – Veronica trains with her friend Emma and this motivates them both. Why not make arrangements to exercise with a friend or family member. If you have a “date” with them, you are much less likely to miss your session.

4: Warm up & Stretch – make sure you warm up properly before starting. When you sign up to take part in the mini marathon for Arthritis Ireland, you will receive a full training pack with lots of useful and safe stretches and exercises.

5: Variety is the spice of life – just as veronica changes her routine with different kinds of exercises, try out things like swimming, aqua aerobics, an exercise bike and walking. Find what suits you at a specific time. Swimming can be great when you want to ease the pressure on your joints.

6: Spread the Word – Tell your family and friends what your goal is and why. As them for sponsorship & tell them why it will make a difference. Ask them for their support. You may be surprised at who you motivate to get involved too.

To read Veronika’s first post click here.

Click here to register your interest or for more information in taking part in the Mini Marathon on behalf of Arthritis Ireland or call Orla on 01-6470209.

Walking Champion John Murray Urges People with Arthritis to ‘Change the Record’ on Exercise for Moving Is the Best Medicine ’14

“Now I realise that I should have tuned-in to exercise sooner. Some of the damage could have been avoided.”–RTE Star Reveals

Irish people need to ‘change the record’ on exercise as many still believe it does

RTE Star John Murray

more harm than good for arthritis – despite overwhelming evidence to the contrary. That was the key message highlighted by RTE star John Murray and Arthritis Ireland today at the launch of Moving Is the Best Medicine ’14.

Having lived with psoriatic arthritis since he was just 18-years-old, the Dublin-based DJ, is looking to raise awareness that exercise is a vital part of the prescription for arthritis. It follows a new survey of people with arthritis which exposes a worrying lack of understanding in Ireland around exercising with this chronic disease. Conducted by Arthritis Ireland, the survey of more than 270 people found that one-in-five continue to view physical activity as something that will increase their pain and make their arthritis worse.

Arthritis is the single biggest cause of disability in Ireland, affecting almost one million people from newborn babies right through to the elderly. There is no cure, but there is a lot that people can do to reduce the impact of arthritis on their lives. Exercise plays a central role in this self-management.

Dublin Rheumatologist Frances Stafford, John Murray & Sinead McGuinness

Murray has not always been aware of the positive effect of exercise and only in recent years has he reaped the benefits through walking and cycling.

“It’s time for people to change the record on exercising with arthritis as the evidence of the benefits is clear,” John said. “I was diagnosed with arthritis when I was just 18-years-old and I thought that because I was in pain it was better to rest my joints. Then in 2007, I made a conscious decision to exercise more. I started walking and lost nearly two stone in weight. Now I realise that I should have tuned-in to exercise sooner. I have irreversible damage to my feet, some of which could have been avoided.”

Every kilogram of excess weight a person carries equates to 4 extra kgs of pressure on the joint, making weight-loss one of the major benefits of exercise for people with arthritis. As well as that, exercising strengthens the joint’s support structure such as the bones, muscles and tendons which in turn reduces stress and pain in the joint.

In the past doctors prescribed a sedentary approach to treating arthritis with patients advised to minimise physical activity. However, we now know that strategy only served to weaken damaged joints further.

Arthritis Ireland CEO John Church said: “As part of Moving Is the Best Medicine ‘14,

John Murray, Erica Mitchell & Sinead McGuinness

we are working to increase understanding that even a small dose of physical activity, whether it’s walking to work instead of driving or taking the stairs instead of the elevator, can dramatically improve a person’s arthritis symptoms. It is recommended that people with arthritis start slowly and build up to at least 30 minutes, five times a week. Arthritis Ireland’s ‘Physical Activity and Arthritis’ booklet includes detailed information on building and maintaining an achievable exercise plan.”     

As well as the Physical Activity and Arthritis booklet, Arthritis Ireland has an exercise website which features our network of exercise groups in communities across Ireland. The programme includes walking groups, aqua and hydrotherapy classes and seated exercise classes (in partnership with Siel Bleu). For more information, log on to ArthritisandExercise.ie or call our exercise hotline on 1890 252 846.

My name is Veronika Kapsova and I have been living with arthritis since the day I was born.

I will be 20 in March and in the years in between I have been under constant attack by this violent disease. Worse than acid poured over your joints. That is the only way to describe the inflammation and pain I’ve had to live with. I’ve even been temporarily blinded. Not something most people expect when they hear the word arthritis. But that is my reality.

When I look back at what I’ve gone through, it is extraordinary to think that this year I will be taking part in the Flora Women’s Mini Marathon. It’s a 10km course that will test me to the very maximum. I’m confident I can do it though. I’ve conquered greater challenges!

In the lead up to this year’s event I will be posting regular diary entries here on the Arthritis Ireland blog. I hope you enjoy reading them and are motivated to join me on June 2^nd. This is my first entry….

I was born in the Czech Republic in 1994 and although I have had problems with arthritis since then, I was 2 years old before I was diagnosed properly. Two diagnoses to be specific: Systemic Juvenile Onset Rheumatoid Idiopathic Arthritis, and a little while after that, Psoriatic Arthritis.

As a baby, I went through a massive amount of different and really invasive medical tests. Doctors were at a loss as to what was wrong. Eventually they diagnosed me. Receiving the necessary treatment to counteract this disease was the next logical step right? Wrong.

There was no specific medication to cure such a condition at the time. The only thing that kept me going since I was about 6-years-old were anti-malarials and steroids which were grossly inadequate in the face of the violence my immune system was inflicting on me every day.

The systemic type of arthritis that I have is the worst and rarest of all forms. Only about 3% of people in the world get it.  It affects the whole system – small bones, big bones, internal organs, brain, visual nerves and much more. As I mentioned above, one flare attacked my visual nerves which left me temporarily blind and not long after that I ended up in a wheelchair unable to walk.

In terms of my life, I found myself under the thumb of this disease. It decided what I did, not me or my family. And it never ruled in my favour. I wasn’t able to attend school. I was unable to do anything physical including walking, running and writing. I was unable to be near anyone who was sick or even had a slight head cold. I would get sick within 24 hours and would be sick for a while. I am still the same now.

My mum homeschooled me in cooperation with my teachers and principal. My mum is a surgical nurse and when she was working my brother would help with my schooling. Despite everything I always managed to pass all my exams.

Eight years ago I moved to Kilkenny but the upturn in my health I’d hoped for didn’t happen straight away. In fact it got a lot worse before it got better.  Since then I have had a brain tumor – benign intracranial hypertension which required numerous surgeries, I was treated for meningitis and diagnosed with chronic migraines and systemic Still’s disease.

At one point I had lost total faith that I would ever be well again. I had been through so much I just wanted it all to stop and live normally like all my other friends. To be honest there wasn’t a time I didn’t think of suicide. I was young, helpless and stupid.

Thankfully there was light at the end of the tunnel. Today I receive a monthly biologic injection now called Tocilizumab (Actemra) and these infusions have helped me to get myself off the ground again. I’ve started to do the things I was used to and also the things I always wanted to do. I am so grateful to my doctors, especially Dr. Orla Killeen, my previous rheumatologist in Crumlin Hospital and Dr. Paul O’Connell, my current rheumatologist in Beaumont Hospital, for all their efforts in helping me to get better. Since I have been on these treatments I have joined the gym again and started exercising regularly and strengthening my body even if my joints or stiff or my body want to fight me because I will fight back.

Nothing stops me. I go in and do what I have to do because I love doing it. I can feel tired after. I am not thinking about when my body will fight me. I am staying positive and I am still here and planning my future – like training for the Flora Women’s Mini Marathon in aid of Arthritis Ireland.

I cannot wait for June 2^nd when I get to join dozens of other women living with arthritis who are walking, jogging or running this race. I will be doing it for myself and the thousands of others out there who are facing the realities of living with arthritis. I hope you will join me on the day too…if you’re a woman of course!

The reason I chose to do it for Arthritis Ireland was down to all of the support they gave me when I was younger. In 2008 I attended an activity weekend break (now the JA Road Trip) with a friend of mine. I enjoyed it so much and realised that I was really thankful to have that support. Today I’m a committee member of the Arthritis Ireland branch in Kilkenny and I try to get involved as much as possible. I am proud to be a member of Team Arthritis Ireland for this year’s Mini Marathon.

Why not join Veronika in signing up to Team Arthritis Ireland for the Flora Women’s Mini  Marathon? Register here.

It’s fair to say that juvenile arthritis affects more than just the child living with the condition and those who are sometimes overlooked are siblings. As an adult living with juvenile arthritis reflecting back upon my childhood, I can see that my disease had a major impact upon my siblings.

The diagnosis, as you all know, can be devastating for the whole family. For my siblings, it wasn’t the easiest of transitions making do with less time with my parents as we got used to this new journey. Regular trips to Crumlin meant that my parents often spent time away from home, which to my sister seemed really exciting. “The big trip to Dublin” was the idea but the reality as you know is far less glamorous.

My siblings are much younger than me so for them it was very difficult to understand, they simply just understood that something had changed. As they got older they understood more and their reaction to me being sick changed for the better. Asking more questions and lending a helping hand when needed, we all began to find the correct balance.

Working with families living with JA, I know that my siblings were not alone in finding a JA diagnosis to be a difficult transition. Siblings often find it hard to understand why little time is left for them.

It’s normal for siblings to feel a range of difficult emotions:

• Confusion about the overall illness
• Helplessness
• Jealousy over unequal parental attention
• Guilt that they are healthy
• Fear that they will also get JA

There are lots of ways that your family can cope with the negative impact JA can have on the family:

• Explain to siblings exactly what is happening. Create an environment whereby siblings can ask you questions. If siblings are young perhaps order a copy of Jasper & Chloe’s Joint Adventure and read it to them. For older siblings maybe go through our JA website juvenilearthritis.ie
• Another idea is to bring siblings along to the occasional appointment so that they can see the reality of a hospital visit.
• Make a home physiotherapy exercise plan where all the family participates. This creates inclusive environment for the entire family.
• Make everyone feel special. Have plans to spend one-to-one time with siblings. Maybe it’s a girls day shopping, a trip to the cinema or a football match. If time is an issue, perhaps taking an extra special interest in their favourite activity or kicking around a football for twenty minutes.
• During a flare-up or times of stress, it is easy to feel overwhelmed. Take things one day at a time, don’t be afraid to change or adapt plans.
• Avoid giving the child living with JA too many special concessions. This can cause a lot of jealousy among siblings. For example, find tasks or chores for each sibling to do to ensure that everyone has something that they can carry out.
• Explain to siblings that difficult emotions are normal and it’s ok to talk to you about these feelings.

If you have any questions or queries about supporting your family, please don’t hesitate to get in touch. Email me at lhickey@arthritisireland.ie or phone (01)6470210.