Peter Boyd’s (Arthritis Ireland Volunteer) account of our 2016 National Volunteer Conference

‘Thanks for coming’, ‘take care now’, ‘mind yourself’, ‘good luck’, ‘mind yourself’, ‘safe home’,

‘Mind Your Self’

I said this to a lot of people at the weekend, and while I’ve always wanted the person hearing it to arrive home safely or watch out for any lurking dangers when I’ve said it before, this time it carried some extra resonance and a deeper meaning.

Like that best friend, partner or mammy who doesn’t say ‘Howya’ when they see you, but asks with genuine interest; ‘How are you?’ They want to know what’s going on in your life, and they want to help. It’s a subtle difference in tone and emphasis but to someone in pain or who needs a listening ear they will recognise that vital difference.

I spent Friday evening and Saturday at the Arthritis Ireland National Volunteer Conference in Athlone. I made sure I got down nice and early to take advantage of the pool. It turns out my shoulders didn’t get the memo though because after doing my warm-up I tried to swim. More crunching went on in my shoulders than at a Crunchie eating party on a Friday in the Cadbury factory!

I was forced into a quick rethink and change of plan if I wanted the relaxation and calm I was searching for. I sat in the garden room of the hotel and read my book for an hour and a half while sipping coffee, a more than adequate substitute!

As a result of this, I would have said I’m pretty good at minding and looking after myself. Saturday changed my mind on this in a very positive way. We did a workshop on “Minding yourself“, and it threw up some brilliant questions for us all.

For example, we were asked about all the different roles we perform in our day-to-day. These included things as diverse as a patient, a parent, a carer, a chauffeur, a cook and a peacekeeper. We were then asked to explain why we choose to add volunteering into our busy lives.

All of us gave reasons that had to do with helping others and that we got our satisfaction from having helped others and giving of ourselves. The problems and challenges we encountered were mainly caused by the days we are affected by our disease and can’t give our best to other people.

But how do you get to the point of being able to volunteer and provide that help and support to people living with arthritis? It turns out; everything truly begins at home, and we must Mind Ourselves first and then look after those we care about. There is a reason we are told to put on our own oxygen masks first before looking after children and others.

So while on Friday I did try to put myself first by settling in for a read and a coffee, it turns out its ok to spoil myself from time to time. We may want to be all things to all people, but sometimes we need to remind ourselves that we are enablers and not magicians.

That is one quote I’ve robbed from a list put together by Mary for us all to bring home and another from Fiona during the workshop was to know the difference between important and urgent. It might be important to answer an email by Friday, but that isn’t urgent on Monday morning.

It is terrible to have to break it to people delivering these workshops that sometimes they are not teaching us anything new. HOWEVER, they are reminding us of buried and forgotten information that we should pay attention to and benefit from. A bit like giving up trans fat and added sugar, it’s something we all know we should do but don’t.

I’ll tell you something for nothing, and I hope it sinks in. This is much easier to do than putting down the pastries and leaving the biscuits untouched with your tea.

So to all the staff in Arthritis Ireland who organised a great event, I say thank you.

To all my fellow volunteers I hope you had as good a time as I did and you did indeed mind yourself getting home. You guys reminded me, as you always do that we don’t have to be at our best to volunteer and help out, but when we give ourselves the best chance and spoil ourselves from time to time too, we can achieve wonderful things.

Mind Yourselves, PB

For more information on events and your local branch, please visit our website here or call Eleanor on 01-6470204

Children with Arthritis – Exam special

Exam

With exams fast approaching it can be a stressful time in any household but when someone lives with arthritis, it can make things a little more challenging.

We’ve put together some tips and information together ahead of the exams starting and also a blog from one of our Youth Leaders on how she survived the Leaving Cert.

 

Top tips in the weeks leading to the exams 

  • Set realistic goals for yourself and review what you have covered and what you need to cover regularly so that you don’t get any unpleasant surprises.
  • If you are using exam accommodations such as a scribe or laptop, practice before the exams so that it’s not your first attempt on exam day.
  • Make sure that you relax, de-stress and have some fun as often as necessary to keep the pressure at a manageable level.
  • Make to-do lists; this will help keep focused and organised. Prepare all the materials you need for the exam the night before.
  • Coming up to the time of exams ensure that you get enough sleep and avoid studying into the early hours right before an exam as tiredness will make it harder to think and to remember what you know.
  • If panic sets in BREATHE, whether it is in the middle of an exam or while trying to sleep the night before, deep relaxing breathing will help to calm your nerves and allow you to get on with it!

 

During the exams:  

Don’t miss out on sleep

Staying up all night might seem like a great idea but getting enough sleep is hugely important especially when you have arthritis. Not only will it help concentration levels but it will also help the body to recover.

Eat Well 

Eating well and having a good breakfast will help with enegy levels and fatigue.

Stay hydrated

Stay hydrated, drink lots of water and make sure to bring a bottle into the exam. We get dehydrated very easily when stressed and nervous!

Arrive early

Get to the exam hall or room early. Not only will it allow you to get set up but it will make things a little less stressful.

Pen’s

It might seem a little obvious but try and test all your pens beforehand. Find a pen that is comfortable to use if you are writing the exam.

Movement Breaks

Take stretch or movement breaks if you can or at least move your joints at the desk every 20 minutes to avoid cramps and excessive pain.

Ice packs/ heat packs

Bring a supply of ice packs or heat packs into the exam hall if you can.

Medication

When in exam mode it’s easy to forget about our routine, remembering to take medication is really important.

Exercise

Some fresh air and gentle exercise will do you the world of good, even if it is only a 10 or 20 minute gentle stroll.

If you have exam supports, don’t be afraid to make the most of them and use them.

After exam:

Don’t forget that an unsuccessful exam is not the end of the world; you can try again, do better next time or take a different course, subject level, etc.

If you are heading to third level education, you can make contact with us in Arthritis Ireland and we will be happy to let you know of available supports.

 

Hear first hand from Emily on surviving exams 
My name is Emily, I’m 20 years old, I have Juvenile Psoriatic Arthritis and Fibromyalgia, and two years ago I did my leaving cert.

It’s difficult to know where to start when it comes to things as big as the leaving cert year, but I guess I’ll start it off with a positive. I did it, thousands of other people did it, you can do it, I promise.

To read more about Emily’s story and her Leaving Cert experience click here

 

Still Waiting in Pain

Image

One in every 1,000 Children living with Arthritis

One in every 1,000 children in Ireland is living with arthritis. It is the biggest cause of childhood disability in Ireland. However, Ireland has one of the lowest of numbers of Consultant Paediatric Rheumatologists in Europe per head of population with the waiting list for diagnosis of children suspected to be more than two years.

Currently, there are 447 children still waiting in pain to be seen by specialist doctors. Early diagnosis and short waiting lists are essential to preventing irreparable joint damage and future complication. Arthritis is so much more than joint pain; children are also living with constant fatigue, muscle wastage, high temperatures and poor immunity. In a recent survey, conducted by Arthritis Ireland, 86% of parents said one of the hardest things about their child having arthritis is seeing their child in pain. However, that is what they have to see on a daily basis, with 32% waiting between 6 weeks and 6 months for a Rheumatology (or Rheumatology related) appointment and 16% waiting over two years. Best practice guidelines recommend that children be seen within six weeks of the onset of symptoms.

Lorna Norton’s son, Mark aged seven, was diagnosed when he was four years old. Lorna said: “When Mark was a baby, he could not raise his head, he missed all of his milestones, and we were told that he may never walk. Some days Mark cannot get out of bed because he is in too much pain, he cannot carry a schoolbag on his back because it makes his knees buckle underneath him. People often don’t understand that there is anything wrong with Mark, they think that he is moaning and that he is lazy. Mark has been on a waiting list for the past two years, waiting to see a Physiotherapist to help with this essential treatment, waiting in pain. For us, there seems like there is no end in sight.”

During the month of May, Arthritis Ireland is advocating to fill more positions, which will ease waiting times, and raise awareness to the severity of childhood arthritis. John Church, CEO Arthritis Ireland, said: “Arthritis is often seen as an “old person’s disease” with “a few aches and pains”, however it is a chronic disease impacting on children and young people in Ireland. Childhood arthritis needs to be given the respect and resources it deserves. That is why we have been working to gain approval and raise funds for an appropriately staffed paediatric clinic.”

By helping Arthritis Ireland raise awareness and advocate for better service you can help a child with arthritis live a full and active life. Find out more about “Children with Arthritis, Still Waiting In Pain” on www.arthritisireland.ie.

Gene regulating severity of tissue damage caused by rheumatoid arthritis discovered by scientists

**** NO REPRODUCTION FEEE **** DUBLIN : 10/10/2013 : Arthritis Ireland. Pictured was XXX. Picture Conor McCabe Photography.

Professor Gerry Wilson and his team have identified a new protein (C5orf30) which regulates the severity of tissue damage caused by rheumatoid arthritis (RA), an autoimmune disease that causes inflammation, pain, stiffness and damage to the joints of the feet, hips, knees, and hands.

Following the discovery published in the scientific journal PNAS (27 August), rheumatoid arthritis patients most likely to suffer the severest effects of the condition can now be identified early and fast-tracked to the more aggressive treatments available.

Although there is no cure for RA, new effective drugs are increasingly available to treat the disease and prevent deformed joints. Self-management of the condition by patients, including exercise, is also known to reduce pain and resulting disability.

To conduct the research, the international team of scientists from University College Dublin and the University of Sheffield, funded by Arthritis Ireland and the University of Sheffield, analysed DNA samples and biopsy samples from joints of over 1,000 Rheumatoid arthritis patients in the United Kingdom and Ireland.

“Our findings provide a genetic marker that could be used to identify those RA patients who require more aggressive treatments or personalised medicine,” said Professor Gerry Wilson from the UCD School of Medicine and Medical Science, University College Dublin, who led the research.

“They also point to the possibility that increasing the levels of C5orf30 in the joints might be a novel method of reducing tissue damage caused by RA”.

Dr Munitta Muthana from the Medical School at the University of Sheffield, who co-authored the study said: “These exciting findings will prompt us to further explore the role of this highly conserved protein that we know so little about, and its significance in human health and disease”.

Rheumatoid arthritis is the most common inflammatory of the types of arthritis affecting around 1% of the population. It is estimated that 30% of patients with rheumatoid arthritis are unable to work within 10 years of onset of the condition. It affects more women than men, and often more severely. It is also most common between the ages of 40 and 70, but it can affect people of any age including children.

One of the biggest difficulties with treating the condition is early diagnosis. With early diagnosis and aggressive treatment, it is possible to reduce the damage to the joints caused by RA. Deciding the most appropriate treatment for each patient at the earliest possible stage is central to effectively tackling the condition.

“Investing in research to find new treatments and ultimately a cure for arthritis is one of our key objectives at Arthritis Ireland,” said John Church, CEO, Arthritis Ireland.

“Treatments for arthritis have improved enormously over the last number of years. Thirty years ago, rheumatologists’ waiting rooms were filled with people in wheelchairs. Today, that is no longer the case. The outlook for a person diagnosed with arthritis in 2015 is much brighter than it used to be. We are getting closer and closer to personalised medicine. This discovery is further proof that we are in the right space and investing our money wisely,” he added.

Professor Doug Veale takes on Ironman Challenge to help fund Arthritis Ireland Research

doug vealeOn August 9th, while most of us will still be enjoying our Sunday morning lie in, over 2,000 athletes will be starting a mammoth challenge that will take in the counties of Dublin, Meath and Kildare, and the sports of swimming, cycling and running.

Professor Doug Veale, Consultant Rheumatologist in St. Vincent’s Hospital is one of these athletes who will take on the Ironman 70.3 triathlon, to help raise funds for Arthritis Ireland.

Prof. Veale will swim 1.2 miles, cycle 56 miles and run 13.1 miles – all within and 8.5hour cut off- to raise funds which will support the Arthritis Ireland Research Nurse Network.

Will you support Prof. Veale as he takes on this challenge?

At Arthritis Ireland we know that with the right investment, new and better treatments can be found for arthritis which affects nearly 1 million adults and over 1,000 children in communities all around Ireland.

Ultimately, our goal is to find a cure.

To this end, Arthritis Ireland is funding research Chairs in UCD and in Trinity College, Dublin. A key part of this work is a team of specially trained nurses that will work in conjunction with the Chairs. They will collect blood and tissue samples from arthritis patients all over Ireland in order to speed up research.

However, we need your support to ensure that we can continue to fund this project.

By supporting Prof. Veale on this sporting challenge, you will be ensuring that Arthritis rDO6Eh6U_400x400Ireland can continue to invest in ground-breaking research, which will help lead to a better understanding of Arthritis, and the development of new treatments and drugs which will ensure that more people can reclaim their lives from this devastating disease.

100% of your donation will be directed towards funding this critical part of our research.

To make a donation and to leave Prof. Veale a message of support, please visit the online sponsorship page by clicking here.

Alternatively text the word JOINTS to 50300 to donate €4.

100% of your donation goes to Arthritis Ireland across most network operators. Some operators apply VAT which means that a minimum of €3.25 will go to Arthritis Ireland. Service Provider: LIKECHARITY Helpline:0766805278

“Give it a TRI” Micro-Triathlon

ArthritisIreland -14A study from the UK, by Dr Stephen Messier, shows that for each pound of body weight lost, there is a 4-pound reduction in knee joint stress among overweight and obese people. Researchers say the results indicate that even modest weight loss may significantly lighten the load on your on your joints.

A cornerstone philosophy at Arthritis Ireland is “moving is the best medicine”. With this in mind, we have launched a unique initiative to engage the Irish public to get out and get active. The Micro-triathlon is the first of its kind in Ireland. It is open to everyone, of all ages and all exercise levels.

John Murray, RTÉ Radio One Presenter, commented: “This is a fantastic idea from Arthritis Ireland. I have been a strong advocate of the benefits of exercise for many years, and with the alarming statistics released from the WHO the Micro-Triathlon couldn’t come at a better time. Ireland has to reverse the ticking time bomb of obesity and the Micro-Triathlon is the ideal goal to help us achieve this.”

Stephanie Casey, Head of Community Development, said: “We know that exercise is the magic pill for arthritis and fibromyalgia. But for many people living with chronic pain, even a short walk can be a huge challenge. We have designed our Micro-Triathlon to suit everyone, whether they have arthritis or simply want to get fit over the summer months. We believe that everyone has the potential to be a Micro-Triathlete!”

The Micro-Triathlon involves a 3km run/walk, 3km cycle and three lengths of a pool/ 30-minute aqua-aerobics class. You can take part as an individual or as a team. It takes place to coincide with National Arthritis Week, on October 10th & 11th, at various locations around the county including Sportslink, Santry on Sunday 11th of October. Registration is €30 for a team and €15 for an individual entry. For more information log on to www.arthritisireland.ie/microtriathlon.

Minister Leo Varadkar goes Back To The School Yard,  in aid of Children with Arthritis 

Arthritis Ireland goes Back To The School Yard with Minister for Health Leo Varadkar – Image 2Children are often the forgotten face of Arthritis with over 1,000 children living with the condition in this country. Arthritis is often seen as an “old person’s disease” however, unfortunately it is also a chronic disease impacting on children and young people in Ireland with more and more cases appearing daily.

A recent online survey conducted by Arthritis Ireland found that over 40% of children diagnosed with arthritis were under 3 years of age and 37% of parents said the most difficult thing about their child having arthritis is the feeling of helplessness and inability to take away their pain. Children with arthritis face daily challenges that can severely impact their childhood, such as not being able to play outside in the school yard, brush their teeth or even hold their mothers hand. Children with arthritis also have to learn to manage their pain with some having injections 1-2 times a week, infusions and fortnightly hospital visits.

Paul Daly’s daughter, Fírinne, was diagnosed with Arthritis when she was only six years old. Paul said: “We were shocked when Fírinne was diagnosed, we didn’t even know children could get arthritis. We manage her condition as best we can but people don’t understand how bad things can get. Sometimes her joints are so swollen, inflamed and stiff. She is in so much pain a hug hurts.”

Arthritis Ireland is campaigning to change this perception with the help of Minister for Health Leo Varadkar. “Back To The School Yard” is a new campaign launched as they raise public awareness about Children with Arthritis and raise much-needed funds for support services to help children and their families. “Back To The School Yard” is a chance for people to organise a day of school yard games in their workplace or community and raise funds for Children with Arthritis.

Leo Varadkar, Minister for Health, said: Back To The School Yard is a great a idea for people to get involved in, as Arthritis Ireland raises much-needed funds and awareness for children living with Arthritis. And it also gives everyone an excuse to relive their childhood games.”

For more information log on to www.backtotheschoolyard.ie or call Emma on 01 6470205.