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Monday, August 31, 2009

10 Things to Never say to Someone with Arthritis

by Maeve Binchy

We've had fantastic feedback since this article was published by the Irish Times to coincide with the launch of our Helpline (1890 252846). So, we thought we should share it with you again. Enjoy!

The bestselling author Maeve Binchy, Arthritis Ireland’s helpline patron, who has arthritis herself, has learnt through her own experience the things you shouldn’t say to someone who has arthritis:

1 "Cheer up, nobody ever died of arthritis." This statement is, oddly,not cheering at all. We have dark,broody feelings that if people did die of arthritis there might have been huge, well-funded research projects over the last few decades, which could have come up with a cure.

2 "It’s just a sign of old age, it will come to us all.” No, it’s not a sign of old age. Even toddlers can get arthritis, and some old people never get a twinge of it. The very worst phrase you can use is "Haven’t you had a good innings?".

3 Remember that marvellous radio series about disabilities called "Does he take sugar?". The message of that title means you should never ask, in the hearing of someone with arthritis: 'Do you think she’ll b able to manage the stairs?' Arthritis can make us many things, but it certainly doesn’t make us deaf.

4 Avoid mentioning magic cures, as anyone with arthritis will already have heard of vinegars, honey, mussels, berry teas, and so on. We will probably have tried them too. It is dispiriting to be told of someone else who was once bent double but now climbs mountains before breakfast.

5 Don’t ever say: “That walking stick is very ageing – I wouldn’t use it if I were you.” Did you think we thought of the stick as a fashion accessory? Of course we know it’s hardly rejuvenating to be seen bent over a stick, but when the alternative is a knee or a hip that could let us down, or pitch us into the traffic, then the stick is a great help. It is
sad when people give us the impression that it makes us look 100 years old. At last we are getting out there, and that should be praised and encouraged.

6 Never let the phrase “a touch of arthritis” pass your lips. You don’t say someone has a touch of diabetes or a touch of asthma. It is denying sympathy and concern for people who have a painful and ever-present condition to minimise it to just “a touch”.

7 Don’t suggest a healthy walk to blow away the cobwebs. People whose joints are unreliable don’t want to get further proof of this when they are halfway down the pier. Unless you are a physiotherapist, don’t impose exercise on others.

8 Don’t tell people with arthritis to go and live in a hot, dry climate like Arizona. We know It might be easier on the joints, but some of us are very happy here with family and friends, and we don’t want to be packed off like remittance men.

9 One time you shouldn’t stay silent is when your favourite restaurants, theatres or galleries are difficult to access for a friend with arthritis. Before you turn your back on them, be sure to tell the owners or proprietors exactly why you will not be making a booking. You can be very polite and praising (“I hear such good things about your place”), but after the flattery should come the reason for regret (“Can I just confirm that
there isn’t a lift and that the cloakrooms are up or down a light of stairs?”). If enough people were to do this, it would not take long to improve facilities. If we don’t tell the offenders, how will they know there’s a problem?

10 Don’t ever say, sadly, how tragic it is that nothing has been done for people with arthritis. Plenty is being done. Just contact Arthritis Ireland, or phone its new helpline. Then you will have an idea of how much is happening and you can be a true and informed friend rather than a false and frightening one.

Reprinted with the permission of the Irish Times

Niamh's Story

We are so used to injecting Niamh with meth on a Friday pm that I forgot to include it in blog last week....

August 25th

Niamh up and doing exercises at 8am takes her losamel before breakfast and naproxen and folic acid after. Niamh is in a very positive mood today and goes on her bike for a half hr after breakfast. Her knees look swollen and hot so after her bike I alternate with hot and cold towels..I ring her occupational terapist to come meet us in school next week as Niamh needs to ger measured for her chair. Her posture is so important.School are great to her she is allowed to get up and walk around class if she gets very stiff. After lunch it is off for a swim.. I really do beleive swimming is the most important exercise for a child with arthritis and I see a hugh difference in Niamh's mobility after a swim.. Niamh does her exercises after tea.

August 26th

Niamh has early morn appt with school dentist for a check up.. she gets up early to run a bath to ease her joints.. This helps her to do her exercises. Losamel before bfast and naproxen after. We are so lucky to have a wheelchair sticker so we can park near dentist entry. Niamh is very bad on steps and takes a gd 10 mins to climb up.I ring my doctor as niamh having such a bad re action to naproxen.. Should I take her off it??? He says no wait for dr Kileen to come back. Her forehead covered in water blisters.. Niamh spends the afternoon on her bike and when it comes to evening exercises caoimhe her 5yr old sister is always on hand to offer support..

August 27th

Niamh is very sore this morning and spends the day in alot of pain.. I am so upset as she was doing so well. She is unable to ride bike so I take her for a swim.. I gave up work to look after Niamh so I can only imagine how difficult it is to work and look after a child who is sick...especially a child who can be good for weeks on end and then in agony.. Every day is so deifferent. The only downside to not working is the fact thatt I am constantly aroud Niamh so I sometimes can get dragged down by it all..

August 28th 29th and 30th

Fridays are injection day and niamh starts to get tense after lunch. granny comes in at 5pm to hold her hand. I give it in her leg and we certainly have had some drama.. she pulled her leg away one day and I stabbed myself she has got so upset that I had to put it in while she not looking... we getting better at it...

We had to travel on saturday to meet Declan's aunt for lunch Niamh very sore and stiff after 1.5 hrs in car we spend a little time massaging knees and putting cold ice on it before we go in..Niamh is so so so brave...

Sunday we have a camoige match Niamh can barely walk let alone run but her teammates are there for her and give her support.She can't wait to get home to a hot bath...


very exciting day Caoimhe starts school.. This takes Niamh's mind off her Arthritis while Caoimhe runs in school gate Niamh has to be supported by her dad...

Talk soon

Monday, August 24, 2009

Niamh Costello's Story

Well our last week has been a real mix of laughter, tears and positivity..........

Wed August 19th
Usual start to day for Niamh, exercise plan, losamel before breakfast after, naproxen and folic acid. Niamh spent an hour on her bike as this helps to keep knees mobile. I spend a little time surfin net always on the look out for any hints and tips to ease Niamh's pain. At the moment we using Pernaton gel this seems to help with pain.Got a phone call asking was Niamh able to travel to a camoige match tonight, for any child this is a nobrainer....But for Niamh it meant an hour on a bus to the match so she arrives very stiff and has to do extra exercises when she gets to pitch..We went and how proud was I to see Niamh running on for last 10 mins of the game. I could see how much pain she in but she ran and chased ball like every other girl... and they won........ Long hour journey home after..

Thurs August 20th

God did Niamh pay for last night.... She very sore and spends about an hour feeling very sorry for herself.. Usual questions.. why me? Will I have it for life? Why do I have such a bad life? I try always to see positive and encorage Niamh to not let it take over her life. It won't beat us.. We had to travel 10 miles to get Niamh's eyes tested for uveitis a condition associated with J A. Niamh has never had it but we get checked every six months..We had a swim in the afternoon and this cheered her up..

Fri August 21st,Sat August 22nd,Sun August 23rd

Usual start every morning except on sat and sun niamh has a friend to stay and doesn't always want to do her exercise's on front of other people... She spends time playing and having a very normal weekend.. Niamh never complains to her friend's and they are very unaware how much pain she is in...

Mon August 24th

Niamh woke up with large blister on her face.. I am in a right panic I ring crumlin but Dr Killeen not back for another 2 wks.. I ring my dr but he doesn't want me to stop naproxen which he is pretty sure is causing it...Niamh lying on couch looking pretty miserable....

Talk soon

Tuesday, August 18, 2009

Niamh Costello's Story

Hi my name is Wendy Costello and my blog is all about my beautiful daughter Niamh. She is now 10 but all our lives changed when Niamh was diagnosed with Juvenile Arhrits at 3yrs. We had no Dr Killeen then. We went to see Dr Monaghan in Crumlin who diagnosed her but her on steroids and then locally injected her 1 joint affected, her left knee. We got on with life as Niamh totally went into remisson for 4 yrs............ We thought that was it until that day sitting in the japanese gardens in Kildare when Niamh said Mum my knee hurts.. Back to crumlin to meet Dr Killeen. Usual treatment.... steroids,nurofen then local injection none of which was working this time. It then spread to right knee at this stage Niamh was a very sore and frightened girl. her whole life was turned upside down. Camoige stopped. Physio started I was now looking up internet for help . ringing arthritis Ireland and meeting parents in crumlin for any sort of advice on things....Niamh went through terrible pain I couldn't see her knees they were so swollen she spent her time in a wheelchair it was too hard to walk anywhere. before Dr Killeen went on maternity leave last year I begged her to put her on methetrexate as she had zero quality of life. So she started on meth tablets a year ago and naproxen. We then met Prof Duffy who quickly put ger on inj as tablets not workin and slowly Niamh started to feel better. Her swimming and physio had to srart full belt now she was most days pain free..Her muscles were deflated in her legs due to lack of exercise we had a hard road ahead of us..We were up with Dr Killeen 4 wks ago she took Niamh off naproxen and put her on feldene Niamh had a severe reaction to this and came out in water blisters on her face. She has had a terrible flare up since coming off naproxen. Dr killeen on hols now so I awaiting her return to see next step>>>Isn't it mad only 1 person in Ireland can make theses decisions>......My doctor afraid to intervene in any of Niamh's medication..

Tuesday 18th August
Niamh woke up at 8am a little stiff and sore does her exercise routine this takes 30 mins her sister Caoimhe 5yrs joins in...
Takes a losamel before bfast and a folic acid and naproxen after
Niamh heads to swimming pool whick is 12 miles from us and has a swim for 45 mins
She takes a rest for afternoon
That is us up to date.... Talk soon

Monday, August 10, 2009

A problem named is a problem halved

Solving problems is a core part of Arthritis Ireland’s Living Well with Arthritis programme. Here, we outline how to list solutions to problems and work through them Solving problems is a tool, a great skill to acquire and an empowering process to master. As a tool, it helps you to solve an immediate problem. As a skill, it’s like riding a bicycle – once learned, you can use it again and again. And as a process, it involves mastering a number of steps. So, when you come up against a obstacle – such as how to do the shopping or make the dinner - you can engage in the problem-solving process to help you achieve your goal. problem may not be solvable now.

As a first step, identify and name the problem you’re tackling so that you can find a solution that works for you.
Steps towards solving problems:
1. Identify the problem
2. List ideas to solve the problem
3. Select one method to try
4. Assess the results
5. Substitute another idea
6. Use other resources
7. Accept that the

This is the most difficult and most important step. Then think about and list all the possible ways of tackling the problem. From your list of possible solutions, sort out which are the most relevant to your situation and which are realistic or manageable. If the problem is solved – great! If not …

Try another idea from the list. Have a look at the results, fine-tuning what went wrong. Work your way down the list of solutions until you’ve used all the ideas on your list, assessing all the while why a particular solution didn’t work. Were you trying to achieve too much? Were you too tired that day for the solution to work?

You may need to use other resources to help make another list. Ask friends, family, professionals for ideas if your solutions didn't work, then go back to the Problem-Solving Steps, and continue until you’ve used all the items on your new list. If your problem is still unsolved, then…You can revisit it at another time.

You can problem solve anytime you have an issue to tackle or a goal to achieve. Follow the problem-solving steps by yourself, with a friend, or in a group. Working with others is great because you have access to a wide variety of viewpoints and potential solutions. Once you have learned the steps and begun to implement the process, problem-solving will be a new skill, which ou can use at any stage to get the most out of your life.

Originally published in Arthritis Life, April 2009. To subscribe to Arthritis Life, click here:

Thursday, August 6, 2009

Living Well with Arthritis

by Maureen Colfor

Some time ago, I experienced quite severe pain in my left foot. I put up with it for some time but when I experienced pain in my knees, I eventually decided to look for help. Following visits to G.P., orthopaedic consultant, x-rays, scans, several courses of anti-inflammatory medication it was decided that I had osteoarthritis and really at my age (I was in my opinion a young fifty something !!) it is to be expected and I would just have to accept it.

I had always led a very busy, active life and found it very difficult to adjust to a life of constant pain and much reduced activity. It wasn’t a life- threatening condition and there did not seem to be much help available. Armed with a walking stick and painkiller, I could get around slowly.

So when I saw a small advertisement for a course entitled “ Living Well with Arthritis “ I decided to apply.
It was with a fair degree of scepticism that I attended the first session. There I met fourteen people, all with some form of arthritis, and the two lovely ladies who would direct the course. It is no exaggeration to say that attending that course was the best thing I had done since first experiencing pain in my foot a long time previously – at this time I was having pain in both feet and in my knees and hands also.

For two hours every Monday morning for six weeks we attended the workshops. It was a very hands-on experience as we got involved in learning how to manage arthritis. The title “Living Well with Arthritis” exactly describes the course.
The two ladies who directed the course were extremely positive and encouraging while certainly not dismissing the difficulties experienced by those with arthritis. The fact that one of them had been living well with arthritis for many years was an inspiration to us all while the other lady was an expert on many aspects of arthritis.

The basis of the course was to help the participant
(a) to manage his/her arthritis
(b) to reduce pain
(c) to deal with problems caused by arthritis
(d) to realise the importance of exercise.
A very practical approach was taken in the work shops on such topics as types of arthritis, self management plans, useful gadgets, importance of exercise including details of suitable exercises, how to cope with related problems e.g. depression, fatigue, sleeplessness etc etc.

One of the main lessons learned was goal setting. Every week each person was asked to set a reasonable a goal e.g. “I will walk for twenty minutes on four days next week” or “I will cut out chocolate and desserts as a first step to losing weight.”
The emphasis was on setting achievable goals. The following week we all reported honestly on how we got on with goals!! The trick was to start again after a “bad” week. Some of us discovered that keeping a diary was a good idea where we entered each day how we got on with our goals. That diary acts as my conscience three years later.!! I fill it in every day, noting how long I spend on flexibility exercises or going for walk not to mention the days I managed stay away from chocolate!! Of course there are a few blanks.

We learned a lot on that course. We were given much practical help.
In fact we found it so helpful that we decided to continue the good work. So three years later, twelve of us meet once a month and follow the format we learned at the course. We have become very good friends and all agree that the meetings have developed into a much-appreciated support group.

Since attending that course in 2006, I have abandoned the walking stick, walk regularly, get out to socialise and I have become a member of Arthritis Ireland – have even become involved in helping out with one of Arthritis Ireland’s many wonderful ventures,the Arthritis Ireland Helpline and made some great friends, all of whom understand the difficulties experienced by those of us with arthritis.

I know it is a cliché to talk about life-changing experiences but I can honestly say, in my case, attending ' Living Well with Arthritis' was a real life change for me.

P.S. For € 20.00 it has got to be the best value for money available !!!