My story of living with rheumatoid arthritis

Aoife McCoy at RA launch

In September 2006, I had just celebrated my 18th birthday when I first started to experience the symptoms of rheumatoid arthritis.

What this means is that my own body is attacking itself, resulting in painful, swollen joints. It affects every single joint in my body – from my jaw down to my baby toe. It makes it extremely difficult and painful to move even an inch, let alone walk and do daily activities. It also makes my joints look extremely deformed from all of the swelling.

I’m not the youngest person to have rheumatoid arthritis by far; however, people do see arthritis as an older person’s problem. I had just started my first year of college. I was admitted into hospital due to the pain that I was in. They couldn’t understand what was wrong with me. I was given drugs to ease the symptoms and sent home after a few weeks. I was referred to specialists who did many tests and procedures to find out what was wrong. They could tell me that I had an autoimmune illness, but not which one. This was because the standard test for rheumatoid arthritis was negative. Nowadays, this test plays just one part in diagnosing a patient with RA, but back then it was a very black and white process. It wasn’t until a few years later that I was finally given the diagnosis of rheumatoid arthritis.

Due to the severity of the symptoms of my rheumatoid arthritis such as painful, swollen joints and a never-ending fatigue, I missed out a lot of my first year of college. I had to repeat many exams and didn’t do as well as I wanted to.

The stress of managing my new condition alongside the pressures of college life eventually took its toll on me. By the end of the second year I was burned out, both mentally and physically. I had numerous admissions to hospital and my course work was paying the price. It was then that I took the decision to leave college. There wasn’t much known then about the help that could be offered to students with disabilities. Also, I don’t think at that point I would have allowed myself to be called a ‘person with a disability’.

At this point I noticed the effect that having a chronic illness had on my relationships with friends and family. People found it hard to understand that I was in pain all of the time. They couldn’t understand how I was still tired after a full night’s sleep. As a young woman in her early 20s, I couldn’t go out with my friends every weekend. I couldn’t spend hours dancing in heels, no matter how much I wanted to. Friends started drifting away, and even family to a certain extent.

This had a huge impact on my mental health and I began feeling very down. We spend so many hours and days on our own, in pain and tired that we lose sight of who we really are. We become a list of symptoms, medication rituals and Epsom salt baths that that’s all we are anymore. We either are abandoned by friends and family who don’t understand and don’t want to say the wrong thing, or we hide ourselves away, not wanting to show our true selves.

Finding the right medication is vital for dealing with RA. However this can be very difficult. I became so down and discouraged because the arthritis didn’t seem to be easing. It was as bad as ever. So I stopped taking my medication. I felt that it wasn’t working but was just making me feel worse. I soon copped on to myself and went back on my medication but because of this I have some irreversible damage. The medication might not make the arthritis better, but stopping it will definitely make it worse.

I took some time off to de-stress and then started courses in my local area. This was much easier on me, as I did not have to travel. It also helped that I had started a Living Well with Arthritis course run by Arthritis Ireland, which helped me to come to terms with my illness. I was much more open with people about how I was feeling and more realistic with my day-to-day expectations. The course taught me invaluable lessons that I still use today. The group sessions ran once a week for a couple of hours, so not too strenuous. I learned that I was not alone in how I was feeling, both physically and mentally. I met people going through the same things as me, who I’m still friends with today. I learned coping mechanisms and how to get the most out of my rheumatology appointments. It also taught me the most important tool in dealing with my arthritis: acceptance.

It’s been very difficult to come to terms with my arthritis, but now that I have it has made a huge difference to me. I still probably have more bad days than good; but it has taught me to really appreciate the good ones when they come. I’ve gained a new and improved outlook on life and I am far more compassionate and caring.

I started a full-time sales job which was perfect for me at the time. It was in my hometown of Mullingar, so didn’t involve any travel and it was a desk job, so wasn’t too physically demanding. This worked out for a year or two, but again I burned myself out. I ended up having to be hospitalised and out of work for many weeks. Even after learning all of the techniques, I hadn’t listened to my body when it was telling me it was under too much pressure. Anyone with a chronic illness will tell you the devastating impact that stress can have on your illness.

I now have a part-time office job which I love. My quality of life has improved drastically, and I don’t have the stress of a 39-hour week. I’ve been open with my boss and work colleagues about my illness and have been able to make changes to my desk area that have helped me greatly. I had my desk ergonomically corrected and have a plug-in radiator as I’m always cold! I applied for the disability allowance which subsidises my wages, and this helps me not worry too much about finances.

Through counselling and working with Arthritis Ireland, I learned that closing myself off to friends and relationships wouldn’t help me in the long run. I learned to let certain people in and to let them help me. I now have a great relationship with my mam, some close friends and my husband. When I’m in a flare I can be very dependent on my husband and mam in particular, but they are amazing people and very selfless.

It can be very hard having to be dependent on people for everyday needs that everyone takes for granted. Things like getting dressed, brushing your hair and even eating become painful ordeals. I try to remind the people who help me that I appreciate them as much as I can and make sure that we don’t have a carer type of relationship, especially with my husband. This can be hard work, but I think it’s so important.

Finding the right medication is vital for dealing with RA. It took a long time to get the right combination for me, but now that they have, I just don’t know myself. I still get days of severe pain, swelling sometimes and am not able to do a lot without fatigue, but I’m so different to what I was a few years ago that I don’t even recognise myself sometimes.

Another thing that has really helped me over the years is helping other people. There’s not much I could do for myself when I was in a lot of pain, but I found that even the smallest bit of volunteer work had a huge impact on my self-worth. It makes you feel good about yourself, shows that you’re not incapable and realistically shows you that there are people worse off than you, which is really important to keep sight of.

I am now about to embark on a whole new chapter of my life, and one that I wasn’t sure I’d ever get to. I’m about to become a mother. It’s been a long and stressful journey to become pregnant – between having to plan to come off some medication to planning when I was most fertile; so it took us a few years to get to this point. However, I am having a typically ‘normal’ pregnancy so far and am so grateful for every week that passes and every kick I feel. I am considered high risk and attend the consultants in my local hospital but so far everything has been right on track.

 

Aoife McCoy’s blog is part of the Living with Rheumatoid Arthritis campaign, which is supported by MSD Ireland.

Tip Sheet for Going Back to School

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Our long glorious summer has finally come to an end and it’s very much back to school time. Whatever about the delights of preparing school lunches and ensuring that uniforms still fit, if your child has juvenile arthritis, there are a number of other things to bear in mind which will help ease the transition back to the classroom.

Young people spend a lot of time writing in class, which can present challenges, especially if their hands are swollen or in pain. It’s not unusual either for them to experience fatigue or stiffness, which they may not always be able to explain to their teachers.

We’ve gathered here some of our top tips, which you can read below. Ideas for how to get the kids up in time for school are sadly now within the remit of this post.

 

Handwriting

If wrists or fingers are affected, this can cause problems with how our hands work. A child may have difficulty writing, managing tools or doing physical tasks. When a child’s joints are inflamed, or they are experiencing pain, they may need extra help with these tasks. At times, a child may write slower than their classmates and may need breaks to rest joints or extra time to complete tasks.

Here are our top tips:

  • Use fat/thicker pens, crayons or pencils that are easier to hold and grip.
  • Pen/pencil shouldn’t be held too close to the nib/tip. If a child presses heavily on them, it can cause extra stress on the joints. An occupational therapist can work with a child to make this easier.
  • Encourage art and crafts and scissors skills at home, this builds up strength in the hands.
  • Take lots of breaks and avoid spending too long in the one position. It’s best for children to avoid leaning their head on their hands while writing.
  • Photocopy long text that they need to use, this can be helpful when a child’s joints are sore.
  • Using a lever arch folder underneath the top edge of the writing surface to give a slope for comfort will be beneficial in the short term. Ensure that the forearm is supported at all times.
  • Typing can be used as an additional support instead of handwriting; it is especially beneficial for homework and essays. It’s important that students learn correct typing skills if using a laptop. Some children are entitled to use laptops during the school year if they cannot write at a reasonable speed.
  • Note taking can be problematic and they are likely to need breaks often. If possible, providing access to a photocopier or providing notes on a USB is beneficial.
  • Use a gel pen or soft lead (2B) mechanical pencil to reduce the stress on joints.
  • Purchase pens or mechanical pencils with a non-slip textured barrel.
  • Use pen grips on thin pens, only if you feel ok about using them.
  • Use elastic bands to create a grip on pens or pencil.
  • Change the grip on the pen frequently to distribute the forces to other fingers. Try holding it between the thumb, index and long finger instead of resting it on the index finger.
  • Break every 20 minutes to do some stretches, neck and hand exercises.

 

Fatigue and pain in school

  • Most children will feel tired returning to school, but for children with JIA this can cause fatigue. Teachers can find it difficult to spot the signs of fatigue or pain in children; making teachers aware of signs will help them to support your child better. In younger children, this could be non-verbal clues such as facial expressions, e.g. a child rubbing a sore joint.
  • Finding the correct balance between pushing a child and knowing when to take rest breaks is often difficult to gauge. Often, taking small breaks can help a child; this avoids pushing themselves too far to keep up with their classmates.
  • If a child has a flare, it is a good idea to grade activities. For example, instead of doing three pages of a worksheet, they only do one. Also, it is important for a child to feel included by adapting activities. This will also boost self-esteem and help protect joints. Older children often tell us they do not want to be treated differently to others.
  • If possible ensure children have access to hot/cold packs during the school day. Letting teachers know what works best for your child is really important.
  • Explain to teachers that when a child is in pain they may have difficulty concentrating, smaller tasks may be appropriate.
  • Movement breaks are essential because their posture changes, while also creating energy. Sitting for long periods of time is bad for most people, but for children with arthritis it can cause increased pain and stiffness in the joints. Encourage the teacher to make movement breaks part of the class schedule throughout the day. Here are some ideas for individual movement breaks: handing out notes, ring the bell, sending a message to the office, stretching at their desks and going to get the chalk.
  • If a child is unable to do an activity look for an alternative way for them to do it. Keeping children involved with their classmates is crucial, ensuring that children are not isolated or made feel different.
  • Ask teachers to practice pacing in school. Encourage the child to pace activities and slowly build up the amount of time they can do each week.
  • Acknowledging their pain, many children feel that people do not believe they are in pain. Ask teachers to acknowledge their pain but then encourage participation, this helps the child feel validated.
  • Ask the teacher to try to keep the child stimulated, so they do not focus on the pain.

 

Top tips preparing for the exams

Exa, time

We’re in exam season, when the Junior Cert and Leaving Cert will dominate the lives of young people and their families across the country. This 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 which will hopefully help you in the next couple of weeks.  You will also be able to read some first hand advice from Emily on how she survived the Leaving Cert.

During the exams

Keep talking and sharing with someone you trust about how things are for you 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 energy 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.

Pens

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.

Exam supports

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

 

After the 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.

 

Emily’s story

Emily

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.

 

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