Going on holidays with arthritis

by Maeve Ferns, Services Support Officer 

Holidays

Planning for long distance travel arrangements

  • Do your homework – how are you travelling?
  • What sort of places will you visit?
  • What type of accommodation will you be staying in?

Travel bags and suitcases

  • Choose the right suitcase and carry bag – decide whether a push type case or a pull case is best.
  • Are the straps the correct size, for carrying or lifting?
  • Pack light.

Medications

  • Make sure to bring all the medications you will require during your holiday.
  • Bring contact information for your GP/consultant, in-date prescriptions and your health insurance information.
  • Consider keeping all the required medications for each leg of your journey in your hand luggage.
  • Maybe divide medications between bags, in case a bag is lost en route.
  • Prior to travelling, inform the travel company that you will be travelling with prescribed medications.
  • Ask if the travel company has any specific requirements relating to medications.
  • Ensure you use an adequate cooler bag (test for temperature maintenance and length of cooling time prior to travelling) to transport medications which require being maintained at a specific temperature.
  • Research a method of replacing medications at your holiday destination prior to the trip – the Pharmaceutical Society of Ireland can be contacted directly at info@psi.ie with queries relating to going abroad and sourcing medications in particular countries.
  • Take into account advice from your GP/consultant regarding medications and sun sensitivity and suitable sun screens.

While on the journey

  • If going by car, stop regularly to stretch and walk.
  • If travelling by plane, train or bus, maybe request the aisle seat in order that it is possible to stand up often, to stretch and walk.

Accommodation

  • Pick accommodation carefully – if required, make sure there is access to lifts, or perhaps request ground level accommodation.
  • Consider the need for a refrigerator in order to keep medications at a specific temperature or to store snacks and drinks to be taken with medications.
  • Take into account distances from accommodation to restaurants and leisure activities.
  • Look for heated swimming pools.

Other considerations

  • Carry a letter from your GP/consultant regarding any metal joint implants.
  • Remember any aids which are required to make holiday time more enjoyable.
  • Bring details of any specific travel insurance for arthritis.
  • Remember to stay hydrated always.

Most importantly have a wonderful holiday!

Coping with stress and pain

Sally Borst, blogger and “Galloping Grandma”, shares with us her account of “Coping with stress and pain.” (Sally lives with severe rheumatoid arthritis,  plus osteoarthritis).

Having been blogging now for a few months and reading all of your blogs out there, I am surprised at how many tell their own particular journey through Chronic Pain. Very few of them offer a way to cope. After all, if you have chronic pain like I do with my RA, then you have it, and it isn’t going to go away. You are stuck with it! So I thought I would devote this blog to what I have learned over the 16 years of my RA and pass my ideas over to you.

The first thing I would offer is LAUGHTER. A good giggle with a girlfriend, an amusing film, a funny thought that brings a smile. You will find that taking your mind off the pain eases it – even if it’s only for a short time.

The second thing is to GET UP and do something positive. Be it a swim (our nearest pool is over 40km away, so no good for me) or a walk outside, preferably in the countryside. Breathe in deeply ( I do this often as I am constantly out of breath !) and look around you at all of Nature’s beauties while trying not to trip up! I put on neoprene mittens and use these to grip a walking pole in each hand. These have the advantage of keeping your stance upright and allowing you to look around instead of looking at your feet! While my two feet were being operated on and I couldn’t walk for over two years, I had the use of a quingo (see a previous blog of mine) which allowed me to go outside and walk or even run the dogs. What a fantastic feeling that was after being shut inside the house for so long! Even a rainy day looked marvellous and made me forget my aches and pains!

Knowing that I faced immobility with my impending foot operations, I searched around for some hobby I could do and came up with PAINTING. I had painted 55 years ago at school, but not since then. I made enquiries and found out that a brilliant artist lived just about a mile from me and I asked her if she would teach me from scratch – and what fun we had (and still have)! A whole morning experimenting with all kinds of mediums and before much time had passed we became, and still are, best friends. I just love the time spent painting – it takes me to whole other place in my mind, away from chronic pain – so much so that I forget all about it for a whole morning at a time. Here is one of my efforts…..

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On my May morning walk….. 2016

I spend most evenings WATCHING TELEVISION. Sitting in my chair with my feet up and enjoying whatever takes my fancy. My long suffering husband waits till I go to bed, which is usually quite early, and then puts on all his men-telly programmes!! Freeing your mind up from constantly thinking about the pain you are in, sets you free. If the pain is greater than the programme on telly, then I take to the shower or bath. I have a bath-knight which lowers and lifts me up and down into the water in our upstairs bathroom as I think it would take the fire brigade to get me out of our other triangular jacuzzi bath downstairs, though I still look at it longingly! Last time I actually tried it, I couldn’t get out, and poor Pat had to strip off and get in with me to lift me out! We had a good laugh over that…..!

I try to stay UNSTRESSED over as much as I can. With me, stress brings on an immediate sort of mini flare up of my RA. I start to feel immense fatigue and full-on pain. For this, I GO AND LIE DOWN, put the radio on to Radio 4 and try counting backwards from 100 – or 200 !! This is really hard to do and makes me concentrate on other things, and I actually can get the mini flare-up to subside, just by counting backwards! There are times when I have to take pain-killers, but I try to do without them as we can all do without constipation that they bring along for the ride!

To sum up, over the years I have learned to control some of my chronic pain with my mind and finding other things to dwell on, and it really works. We are stuck with the pain, so let’s make the best of it and certainly love life and all the marvellous things it offers. Experiment with new horizons and keep moving forward in whatever manner you can!

Read more from The Galloping Grandma by clicking this link http://bit.ly/2hzGbOC

 

11 Things I wish I was told when I was diagnosed with Arthritis.

At 15 Gloria Shannon was diagnosed with arthritis, the doctors and nurses talked a lot and explained lots of medical terms to her, but there were lots they just couldn’t have known. These are Gloria’s list of “11 Things I wish I had known when I was diagnosed with arthritis”.

  1. At the moment, there is no cure, but that doesn’t mean any future.

Arthritis is something that is ‘managed’ and not cured. It is something you will have for the rest of your life and will affect you every day. However, you will still go on living. Things will be harder for you than most, but you still have so much potential and so much life to live. Arthritis may slow you down sometimes, but there is no need for it to stop you.

  1. It is not something to be embarrassed about.

Sometimes when you need help undressing or get locked in the bathroom because you can’t unlock the door, you will feel utter mortification. Stop…it is fine. You need help or take longer to do things because you are unwell. You are not useless, stupid or an embarrassment. You didn’t ask to be sick it just happened, and it is nothing to be embarrassed by.

  1. There will be lots of bad days, but there will be lots of good days.

You will have days where you can’t physically get out of bed, and it feels like the world is an incredibly unfair place (it is), but then you will have days where you laugh your butt off with friends and family or can manage a long walk or do something really impressive like dance all night! Unfortunately, you have to take the rough with the smooth, and there will be lots of smooth so don’t worry too much.

  1. ‘Normal’ People will never really understand.

People without arthritis will never understand a 100% what you are going through. Some will try, and that is wonderful, but they will sometimes say the wrong thing, be confused as to how you can do something today but not yesterday and will every once in a while get frustrated. It is not always the case that they don’t care or don’t believe you it can simply be a case of confusion.

  1. You have to grieve the old you to make way for the new you.

The old you might have run marathons all the time or worked every hour god sends. The old you might have been able to go out four nights a week, not a bother. But you are no longer the old you. You have the same personality as the old you and hopes and dreams as the old you but you have limitations now, new fears and concerns and new priorities. Before you can fully make way for the new you, you need to accept the old you is gone.

  1. Tell people when you can’t do something. It’s okay.

Sometimes you won’t be able to pour a cup of tea from the pot or cook the dinner or carry the box from the lobby. Whatever it may be and you need to tell people that. You need to be honest because pushing yourself to do it when you can’t will leave you in agony and not doing it at all will only frustrate those around you. Just explain you can’t. This is something I still struggle with 10 years on but it is a learning curve and its always better to just say ‘I can’t ‘.

  1. It is okay not to be okay.

You don’t have to pretend you are fine all the time. Sometimes you won’t be fine. I am not saying stop everyone on your way to the shops or into work and tell them ‘You know I am not ok’ but when a close friend or family member asks ‘How are you?’ you are allowed say ‘Not that great actually’. That’s why we have friends and family members and being honest about when you’re not ok is much better for your mental health.

  1. Tell your Doctor everything.

Tell your doctor when you feel like the medicine isn’t being effective anymore, or when you have developed a new symptom, side effect or pain somewhere. Hiding it is not going to make the appointment go quicker or make you feel any better.  Your doctor is there to help you as best as they can, they can’t do that if they don’t know the full extent of what is actually wrong.

  1. Laugh about it.

Sometimes you have to laugh and find some humour in the situation. Funny memes or cracking the odd joke about yourself or your condition can help. Laughter is the best medicine after all.

  1. Cry about it.

Yes, cry your heart out because it sucks and it happened to you, and you deserve to let all the frustration out. Cry because you’re mad and sad and cry because you are in pain. Don’t hold that in all the time. Once in a while, you need to let it out and throw yourself a little pity party which admits one.

  1. Never give Up.

Yes, there is no cure, and yes it sucks, but that doesn’t mean you give up. Life is for the living and you are included in that. In today’s modern world there are tools and gadgets to help you achieve all sorts. There are ways and means to conquer your dreams. Where there is a will, there’s a way so never stop trying.

To read more from Gloria, log on to her blog:

The Girl With The Old Lady Bones – Arthritis might slow me down but it will never stop me! https://thegirlwiththeoldladybones.wordpress.com/

 

How to cope with winter weather by the Galloping Grandma, Sally Borst

Sally Borst, blogger and “Galloping Grandma”, shares with us her account of “How to cope with winter weather.” (Sally lives with severe rheumatoid arthritis,  plus osteoarthritis).

Here in South West Ireland after a balmy autumn with hardly a drop of rain, we have suddenly been plunged into winter with icy frosts and wind straight from the Arctic, and our local mountains are covered in snow. So I thought it timely to come up with suggestions as to how to cope with your RA and the cold.

It goes without saying that you should dress warmly, preferably in several layers as this traps and warms air between the layers from your body heat. Trousers and thick socks are fine for me, but if you wear skirts, then warm woolly tights will keep your legs snug. I have difficulty putting on socks so I tend to wear Ugg boots that don’t require any socks as they are full of sheep wool and can be pulled on easily.

For outside a woolly hat, gloves or mittens. Gloves can also be layered to keep your sore hands really cosy, and a warm scarf can keep your neck and the bottom part of your face warm too! I also have neoprene mittens which are brilliant and can be worn under gloves. It’s really important in cold weather to keep hydrated, or your system will rapidly cool down. So lots of water and possibly (like me) a hot port of an evening! If possible try to drink warm water and apply this also to the outside of your body by lazing in a hot bath or swimming in a heated pool.

Swimming is excellent exercise and even if you have chronic pain it is vital to exercise in some manner. Walking at whatever pace you can manage is really good for you and if you have two enthusiastic dogs like me, give in to their pleading looks and go for a stroll. I can’t walk very far, after my two feet operations, but I try to go a couple of yards further each day. Also, I find just getting around the house keeps me active or walking around the shopping mall when we go to Killarney.

It’s really important to watch you don’t slip on icy pavements or drives. Get someone to put down salt on the ground where you walk most often and make sure you have good treads on your supportive footwear. I have Fell walking boots that lace up around my ankles. Difficult to get in or out of without a lovely husband like mine, but well worth the effort.

I take Omega 3, and a Glucosamine-Chondroitin supplement daily which seems to help me, and certainly cannot harm. Everyone is always full of helpful advice as to what supplements to take, but I think different things work for different people and if a supplement seems to help, then take it.

Finally, there is a lot of debate as to whether people with RA (or even just arthritis) can foretell if a cold spell is coming – something to do with barometric pressure – that will set off a flare up. I definitely ‘feel it in my joints’ when the weather is about to change. The best advice I can give you on this is to immediately book a long holiday somewhere warm where you can laze in the sun, drink long cool drinks and swim off the beach in warm water – and, oh yes, a stroll down the beach at the water’s edge with your feet in the warm sand will do you a power of good as well!

Read more from The Galloping Grandma by clicking this link http://bit.ly/2gs6K7i

Gout ‘Disease of Kings’ stereotype is unfair and untrue

Arthritis Ireland challenge modern day Gout misconceptions

Gout is the most common form of inflammatory arthritis in men and women, and affects 1 in 40 people in Ireland. The condition can be extremely painful and if poorly managed can have a significant effect on quality of life. Gout doesn’t discriminate between rich and poor, fat or thin, men or women. Gout is often seen as a disease that affects people who are wealthy and overweight and popularly depicted as a ‘disease of kings’ with those affected stereotyped as overweight, middle-aged men who indulge in a lavish lifestyle of rich food. In fact, gout can affect anyone.

Des Warren, from Dalkey, Co. Dublin, was diagnosed when he only 30 years of age. Des commented: “I was on my honeymoon when I first noticed something was wrong. My foot and toe were swollen and extremely painful. The pain is the hardest part of the disease. People have a bemused, sympathetic response when I tell them I have gout. They see it as a disease I have caused, by making bad lifestyle choices. When the opposite is true, I was a fit, healthy man in my 30’s – I played sport, ate well and drank in moderation. My life changed overnight, and I have been managing it ever since.”

John Church, CEO Arthritis Ireland, said: “People with gout in Ireland are fed up living with the stereotype that gout is the result of living the high life and over-indulging when in fact the reality is very different. People with gout are faced with many challenges as they manage their disease. Arthritis Ireland is here to support those living with gout on their journey to wellness and break down the barriers and misconceptions people living with gout face. With this in mind, we are hosting an information evening on Wednesday 23rd of November and encourage all those living with gout to attend.”

Professor Geraldine Mc Carthy, Consultant Rheumatologist at the Mater Hospital, said: “Gout is the most common cause of inflammatory arthritis occuring in humans and is becoming more frequent with time. Up to one in forty adults may experience gout. People may have symptoms of gout for many years before they are diagnosed. That is why it is important to know there are highly effective treatments available for gout, once they are taken correctly. At the upcoming information evening, I will explain many aspects of gout, such as what causes it, how it is, diagnosed, treated and lifestyle recommendations to help manage your gout.”

Arthritis Ireland is hosting an information evening, ‘Living with Gout’, Wednesday 23rd November at the Radisson Blu St. Helen’s Hotel, Stillorgan Road, Blackrock, Co. Dublin, from 7pm (registration, networking & tea/coffee from 7pm and speakers at 7.30pm). Admission is free, and all are welcome. To book your place visit www.arthritisireland.ie or www.bit.do/GoutEvent. The information evening is kindly supported by A. Menarini Pharmaceuticals.

From left to right:                                                                                                                             Professor Geraldine Mc Carthy and Niall Heelan (A. Menarini Pharmaceuticals)

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565 Children Waiting in Pain

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Children with arthritis are fed up waiting in pain. 565 is the number of children waiting to see a consultant paediatric rheumatologist for the treatment of childhood arthritis, Juvenile Idiopathic Arthritis (JIA). The latest figures show that the waiting list crisis has intensified, with the number of children waiting in pain for over a year and a half increasing by an exponential 400% since January, 2016.

More than 1,200 children are living with arthritis in Ireland today, making it as common as childhood diabetes. However, the paediatric rheumatology service at Our Lady’s Children’s Hospital, Crumlin (OLCHC) is inadequately staffed to deal with the volume of children waiting to be seen. There are just two dedicated consultant paediatric rheumatologists appointed for the entire country to cater for children who live with constant pain in their joints and many other parts of their bodies. There is no cure for arthritis but with the correct standards of care children can have as normal and as active a life as possible.

The inadequate staffing levels are leading to waiting lists of more than a year and half for children with suspected arthritis. This is despite recommendations from the British Society for Paediatric and Adolescent Rheumatology (BSPAR), which states that children with suspected arthritis must be seen by the paediatric rheumatology team within four weeks of the referral being made.

Sixteen-year-old Darcy White waited for almost two years to be seen and commented: “Having waited for nearly two years to be diagnosed, I know how important it is to have quick access to a rheumatologist to get the treatment you need. Nobody knows this moredarcywhite than me, had I been seen earlier my condition would not be this aggressive. The pain is excruciating, it often brings me to tears. Arthritis is an aggressive autoimmune disease that isn’t going anywhere. Most days when I come home from school I lie in bed, I don’t
have the energy to go out. Arthritis came out of nowhere and changed my life completely; it stopped me from doing the things I love, and I hate it for that. I wish I didn’t have to fight arthritis, it seemed a lot easier at first, but now I’m exhausted. But staying positive and hoping that one day we will manage the pain and I will go into remission, helps me to stay strong and more determined to fight. I wish with all my heart that the services for children with arthritis would improve, children should not be left waiting in pain. Don’t they realise they are robbing our childhood and causing irreparable damage physically and emotionally? Don’t they care?

John Church, CEO of Arthritis Ireland, said: “Ireland has only two paediatric rheumatology consultants, we are ranked as having one of the lowest number of paediatric rheumatologists in Europe. If left untreated, it can quickly lead to permanent joint damage, muscle wastage and deformity, not to mention the trauma a child and its family experiences. Children deserve better.”

This is a national crisis, so enough is enough. As part of National Arthritis Week, Arthritis Ireland are calling for the urgent appointment of a third consultant paediatric rheumatologist to be appointed at OLCHC to help ease the huge burden on the already overstretched services. Children on waiting lists are not just waiting in pain; they are also at risk of permanent, irreversible joint damage that impacts on their ability to live a normal a life as possible.

To support Arthritis Ireland sign our petition by clicking here or make a donation by clicking here .

Sona announces Arthritis Ireland as one of its new charity partners

Sona, Ireland’s leading producer of nutritional supplements and herbal remedies, has announced that it has formed a new charity partnership with Arthritis Ireland.

The announcement marks Sona’s continued support of active lives, through a partnership that over the next 12 months alone will see €10,000 in much-needed funding raised for Arthritis Ireland.  The aim of the partnership is to spread awareness of the range of vital support and information that is provided by an Irish organisation committed to working towards a future free from arthritis.

Arthritis Ireland will be given a fantastic platform as part of this partnership to promote its services across Sona’s products, through information that will appear for a limited time on the brand’s packs. Sona’s extensive product range includes a number of effective solutions for bone and joint care ideal for those suffering from arthritis, including Sona JOINTPLAN, Sona Glucosamine Sulphate, Sona Omergan and Omega 3. 

Arthritis Ireland, which was founded in 1981, provides support to communities across the country to help people manage and control this devastating disease. For over 30 years, the charity has actively driven grassroots advocacy so that a voice for Irish people living with arthritis can be heard. Arthritis Ireland also assist the Irish medical community in finding solutions to controlling the effects of arthritis.

Arthritis Ireland cannot directly cure those affected. However, with the help and support of Sona over the coming years, the charity aims to help people take control of their disease while investing in research to find new treatments and, ultimately a cure.

CEO of Arthritis Ireland, John Church welcomed the partnership saying: ‘We are thrilled to be chosen as the new charity partner for such an iconic brand as Sona Nutrition and I want to thank them for choosing to support Arthritis Ireland and help us in our work across Ireland.

As the oldest, established producer of nutrition in Ireland, Sona is the one name in that market that the nation can turn to with confidence. I can guarantee that every cent raised from this partnership will go a long way in making a huge difference to those living with arthritis, reminding them that others care and that they are not alone. Thank you so much to all involved’.

Ohan Yerganharsian, Managing Director of Sona said: ‘It’s impossible to comprehend the challenges that people across Ireland living with arthritis face on a daily basis, however, the work of Arthritis Ireland provides invaluable support to those in need of help. We’re delighted to extend our support to this very worthy cause which we believe will change many people’s lives for the better’.

For more information on Sona Nutrition and Arthritis Ireland, see www.sona.ie / www.arthritisireland.ie

To celebrate the launch of the partnership Sona Nutrition are offering Arthritis Ireland members this special offer:

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