TRACY'S STORY: 40+ YEARS OF RA: WORDS FROM THE WISE!

Being diagnosed with chronic illness can be devastating, yet even in the worst cases, with the proper knowledge and support people often find themselves to be more resilient than they imagined. Tracy Southern's story is a typical example. Being struck down with Rheumatoid Arthritis (which today would be classed as JIA) back in the 70s, especially at the tender age of 13, would have have been a dreadful experience. As time progressed though, and, thankfully, her illness mainly subsided, she discovered tools that made a real difference, most notably homeopathy. Now a fully qualified Homeopathist and Australian Bush Essences practitioner herself,  Tracy will be giving a talk about Homeopathy and the importance of complementary health support when dealing with chronic illness, Tuesday 12th September 2017, St Paul's Church Hall, Ramsey. The talk is free to attend, with a donation bucket for Without Wings. 

"I developed RA when I was 13. Over a matter of months I changed from a sporty teenager, who loved school, enjoyed being with friends and was on the edge of independence to being exhausted and immobilised by pain.  Initially, pains and swellings were put down to sporting injuries, but as I lost weight, energy and became increasingly bad tempered and withdrawn because of how ill I felt, it became clear that something was seriously wrong.  I was treated in an adult hospital because that was the closest specialist hospital available, and even now, more than 40 years on I can remember how grim that time was. RA can be a terribly painful and isolating disease, especially for the young. Throughout my teens it felt as though there was so much of life I couldn’t take part in.

Thankfully, in my thirties the symptoms of RA subsided considerably and I was able to get by mainly on pain killers, but in hindsight, in rather bigger doses than was ideal.  By my 40’s the disease was hardly active in terms of inflammation, however I have been left with a lot of damage to my joints.  It was in this period that I discovered Homeopathy. Finding it helped me considerably - both physically and mentally, and as a result I went on to train as a Homeopath in London.  

Nowadays, even though I have a lot of damage to my joints, I am still very fit - able to walk further, for example, than probably since I was first ill and I do not take any medication. I walk every day (just how far depends on the weather – even the dog doesn’t like the rain!)  and I continue to use and practice Homeopathy and Australian Bush Flower essences which I find a tremendous support.

I had a flare up in 2015 which came as an enormous shock.  My knees and ankles swelled and I could hardly walk because of the pain.  I think that flare up, which happily subsided fairly quickly, was due to a combination of stress and digestion issues after a holiday in India. I do think diet has a powerful role in dealing with RA and I believe mental-emotional issues have a huge impact on our health.

Tracy's 5 Top Tips!
1. Look after yourself! Understanding that looking after yourself in terms of food, activity and support is essential and gives a very strong sense of control.
2. Use complementary therapies alongside your treatment if you are able. This can enhance your well-being tremendously, which has a knock on effect on the entire system.
​3. Believe you can get better! Belief is enormously powerful. I witnessed this from my very earliest days in hospital. The trick is, to never give up! Also, know life carries on. It'll be a little harder perhaps, with maybe more ups and downs, but you can still find depth and joy when living with Rheumatoid Arthritis.
​4. Find a way to communicate to loved ones about how you are. This illness can vary so much on a day to day basis which can be intensely difficult and frustrating for others to appreciate. Working out how to calmly explain to others how you are, is therefore vital for both your own support and their sanity.
5. Be aware of how you are. Learn to pick up deterioration and look at what might be affecting you rather than ignoring it. Celebrate improvements too and do more of what makes you feel better. 

STEPH'S STORY: INTERNATIONAL DAY OF FAMILIES, MAY 15TH.

Steph's Story

Having, or raising a family with autoimmune arthritis is often a tricky issue. Local resident, Steph Begbie was only 21 when she was diagnosed with PsA. As if this wasn’t enough to deal with, she was also 3 months pregnant with her first child. After giving birth to her son, she should have been basking in the glory of new motherhood. Instead, she experienced her first ‘life changing flare.’ In yet another very special ‘inspirational story’ to mark international day of families, Steph shares with us something of the challenges she has faced, the tough decisions she and her husband have had to make, and also her incredible positivity and strength in the face of adversity.

“Being diagnosed with Psoriatic arthritis aged 21 was a shock! Especially as I was newly pregnant. I couldn’t understand how I could have 'arthritis' when I was so young, or the enormity of the diagnosis. Two weeks after giving birth however, I had my first major flare, though I didn’t realise at the time that I suffered from a particularly rare and nasty form of PsA that causes rapid joint destruction. It left my right wrist completely fused. What followed of course, was talk of meds, and I was given a leaflet for methotrexate. After reading a sentence that suggested it could affect fertility, I made the difficult decision to try for another baby first. This was met with opposition from the hospital, but I had always wanted a big family. When I was told by one health care professional that in doing so I would ‘ruin my son’s life’, I became even more determined not to let the illness hinder me. Of course the decision to have my daughter has had an impact on the way we live. If I had been healthy I would have undoubtedly followed my career, instead I have been a stay at home Mum, which is a hard job, but being around for so much of their childhood has been a real blessing. Having my daughter 18 months after my son also meant eventually having to have a full hip replacement 9 days before Christmas, which was also a week after my 27th birthday! But I would certainly never change the decisions I made. The biggest thing I have learnt it that it is entirely possible to still have a fulfilling family life, even when faced with some real challenges.” 

Steph’s 5 top tips!

1. I never let the PsA stand in the way of what I really want. Yes having a baby with autoimmune arthritis can be extremely challenging, but it is also extremely rewarding.
2. I learnt to never underestimate my kids! My children are super resilient. I had to pick my baby and toddler up very differently, but they always got into position to help me as they didn't know any differently. They also got used to being without a pram from a very early age as I found it too difficult to push. They never complained and adjusted accordingly. My children have learnt too that sometimes they need to entertain themselves - their imaginations are fantastic! And they are so responsible around the home. They often help me with little jobs. My children have always kept me going.
3. I learnt to ask for help. In my experience the occupational therapists were amazing! They took 'I can't do it anymore' into 'you can still do it, but in a different way.’ They were so positive and had brilliant methods for helping me manage around the home with different techniques and equipment.
4. ‘You can’t pour from an empty cup’. I love this quote. Learning to rest has become so important. I prioritise what's most important and let everything else go. Housework can wait. When the children were little I used local mums and tots groups regularly so I could speak to adults over a cup of tea. That hour of them playing and giving me some space was invaluable.
5.  I sought out support. I would have loved to have had a support network like Without Wings when I was first diagnosed! I really struggled for a long time after. When my second child turned 28 months I ended up having Psychological Therapy sessions, which, without being dramatic, saved me. Having a baby when you’re healthy can be difficult enough without the added stress of a chronic illness! Allowing myself to talk to someone when I was struggling, benefitted me massively. It was so good to know I wasn’t alone.​​

NICOLA AND ISAAC'S STORY: THE VALUE OF SUPPORT

Nicola and Isaac's Story
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As the youngest sufferer of autoimmune arthritis on the Island, Isaac Megson and his mother, Nicola, were invited to choose the name of the Without Wing's bird. They chose Lula! Isaac, aged 3, was diagnosed with JIA aged only one.


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“We first noticed something was wrong with Isaac when he started walking at 14 months. He struggled a lot, and in the mornings his left knee seemed very painful and swollen. The swelling would subside during the day, which meant that despite many trips to the doctor’s and even A and E, we were repeatedly told they could see nothing wrong. In the end we had to video the severity of Isaac’s lack of mobility. It took seven very difficult months before he was finally diagnosed and we were referred to Alder Hey. It was here where he was prescribed strong painkillers and steroid injections into his knees. Unfortunately, the arthritis quickly spread to numerous joints in his small body, including his ankles, toes, left arm, neck, shoulders, head and jaw. It was devastating. By July 2016 he couldn’t move and we had to do everything for him. Just dressing him was a huge challenge as any movement at all would cause him a lot of pain. There were always tears, and not only from Isaac. Seeing your child in so much pain is so difficult. I would have done anything to have taken it away from him. 

In August 2016 we were told he now had Polyarticular Arthritis and he was prescribed Methotrexate. So far it has been our miracle drug. Isaac has gone from being very quiet and subdued to being a cheeky, happy boy full of joy. He still has bad days and still gets swellings in his lower body that require steroid injections, but before he was in so much pain he found it hard to communicate. Now his vocabulary and speech are much improved. 

Nicola's top tips:

1. Get support and raise awareness! Support is vital when dealing with something like this. Up until now our experience had been very isolating. When Without Wings put us in contact with other families in a similar situation, I therefore decided to do something proactive and set up a support group. You can find our Facebook page here: https://www.facebook.com/JuvenileIdiopathicArthritisIsleOfMan/  We hope that by raising awareness our children will receive the help and understanding that is needed as they grow older. 
2. Cold cloths and cooling pads are a real life saver when Isaac's knees become inflamed, as is very gentle massage.
3. Take the pressure off - swimming is essential for Isaac as it takes all the pressure off his joints and is also something nice we can enjoy as a family.
4. Find the right level of medication - This can take time but when it does happen it can be a complete life changer. It's been amazing to watch Isaac's pain diminish. We're now seeing him for the cheeky little boy he really is!
5. Cuddles are also essential too! Lots and lots of them!

Earlier this year, Without Wings launched a press release and also our website. The response was overwhelmingly positive, most notably with many families living with JIA coming forward who had, up until now, experienced no support on the Island. When we asked how we could help, the answer was unanimous: awareness! Both Isaac and Rio's stories have therefore been part of Without Wing's February JIA awareness campaign.

JUVENILE IDIOPATHIC ARTHRITIS (JIA) RIO'S STORY

Cat and Mike Haxby are parents to teenager Maddison and 4 year old twins, Xander and Gabriella, as well as Rio who's 9. Rio was diagnosed with polyarticular arthritis (JIA) in 2012.

Until 2012, when Rio was 6, he was happy and developing normally. Initially, when he began to get pains in his legs people told us they were growing pains, but when they got worse we did some research on the internet and became convinced his symptoms were text book JIA. The GP confirmed this as the most likely diagnosis and referred him to Alder Hey. We had to wait a short while for that first appointment, and during this time Rio deteriorated. He was struggling to walk and had to shuffle down the stairs on his bum or we had to carry him. Life was getting very hard and it was particularly worrying because I was heavily pregnant with the twins. Rio was finally diagnosed with polyarticular arthritis, which meant he had over 5 joints affected by inflammation, including his knees, ankles some toes and fingers. This was our worst fear and our hearts broke for him. Luckily, Rio has responded amazingly to treatment. The steroid injections he had into his joints we saw as ‘magic medicine,’ as they meant he could walk pain free! He is also on methotrexate, and although he did appear to be recovering and even managed a period without it, he is on it permanently now until Alder Hey decides he can try and come off it again. Rio manages extremely well and is such a brave and inspirational boy. Throughout the past few years he has never complained about his condition. He really is a super star!"

CAT'S 'TOP TIPS!'

1. Never underestimate a child and their bravery - Rio is proof that they can actually be braver than us adults! 
2. Distract your child during their methotrexate injections with ipads, books, mobile phones. 
3. Keep a positive attitude towards your child when they are having a bad day. Even if you don’t feel positive yourself, it’s uplifting for everyone within the family and gives everyone hope and strength. 
4. It’s good to talk! Stick together as a family and always talk any worries through. 
5. Family time is precious. Choose outings that everyone will benefit from, like swimming or going to Costa!

DANNY THE CHAMPION OF THE RA WORLD!

Having managed to successfully achieve remission and manage his illness 100% naturally, Dutch speaker, Danny Preil, really is a champ of the RA world! Danny will be visiting the Island at the end of July where he'll be sharing his experience as Without Wing's first speaker. 

Disclaimer: These illnesses can be volatile and unpredictable. No one attempting natural healing should EVER reduce their medication without the full knowledge and consent of their healthcare provider.

"My name is Danny Preil and I live in the Netherlands. When I was 31 years old I awoke with sore feet and on the third day I couldn't even dress or undress myself. Naturally frustration and fear set in, but I am a determined guy. After being told I had rheumatoid arthritis, and my illness was progressive and I would never get well, I became determined to defy the odds. With the support of my rheumatologist, I therefore embarked on a natural healing programme. It was tough, but I was lucky. I have seen many others take years of intensive dietary intervention to recover. For me, I was drug free and pain free in less than one year. After 18 months I could run again without any fear of swellings. You can find out more about the natural healing programme I follow here: www.paddisonprogram.com
I will be talking more about my approach during my talk in July, but for now, here are a few teasers...

DANNY'S 'TOP TIPS'

1. I take responsibility for my own health It is my belief that my body is communicating with me and so I choose to listen.
2. I exercise at least 30 minutes every day Aerobic exercise is almost as important as diet to me in managing this illness.
3. I don't eat animal protein The programme I follow was devised by an Australian, Clint Paddison. He used the same strategy in order to successfully manage his own RA. You can view Clint's recent video for the world healthcare forum here: https://www.facebook.com/search/top/?q=paddison%20program%20for%20rheumatoid%20arthritis
4. I eat huge amounts of green leafy vegetables Green smoothies are King! I have these every day.
5. I eat fermented foods like raw sauerkraut and unpasteurised miso These foods are super probiotic! I make my own sauerkraut as the bought kind can be expensive.

JACKIE'S STORY: AUTOIMMUNE ARTHRITIS AND MENTAL HEALTH

Without Wing's Chairperson, Jackie, talks about how she has learnt to protect her mental health during times of difficulty.

"I was hit very violently with seronegative inflammatory arthritis (I have elements of both PsA and AS) in the Summer of 2013. Finally diagnosed in the December, I entered a long and difficult period of recovery. Even if I wasn't still recovering from a major anxiety disorder - the result of 3.5 years worth of relentless, hypothyroid induced tinnitus - protecting my mental health during this bleak time would have been a challenge.

Luckily, by the time I got sick, I was already a 'graduate' of The Linden Method - a distraction and diversion method of anxiety recovery, so I had good tools. However, with all my distractions (mostly sport, music and social based), suddenly lost to a crippling illness, I knew if I didn't act fast then I risked a major mental health relapse.
You can find out more about the Linden Method, here: www.thelindenmethod.co.uk
Here's what I found worked for me...

JACKIE'S 'TOP TIPS'

1. ​I lowered my expectations of others. Doing this made me instantly happier. Crippling illness literally knocked me off my feet and left me very vulnerable and reliant on others, plus it disconnected me from all my usual social groups. Expecting less enabled me to feel much more in control of my situation.
2. I Quit the Junk! My body was screaming at me. Even triple DMARD and steroid therapy didn't get me into remission. It was very frightening. I embarked on a the same programme as Danny above. It's been up and down - there are so many contributing factors to the illness, such as stress, but when I'm in the zone, it's pretty much up. I'm down to just the MTX now and in 'remission'. I've learnt though, that whether I recover completely or not is only half the story. It's believing I'm doing the right thing that makes me feel I can live well with this illness.
3. I have a zero tolerance policy on cruelty. I don't eat animals and I don't fight fire with fire. I don't research negative information, slander or practice scare mongering. I surround myself by amazing people who I love and respect and I consider myself very lucky.
4. I'm careful where I put my attention I have learnt that what I focus on grows stronger. It's true. When I focus on the good in people, it's what I see, when I focus on all the frightening 'possibilities' regarding this illness, I get anxious and depressed. I can, of course, be a world class expert at meltdowns and whining, but then I've been very ill so I figure the occasional tantrum is acceptable. Still, I work hard not to stay there, and I do this with my most powerful healing tool which is...
5. Getting Creative! Before I got ill I was a musician. Writing wasn't even an ambition of mine. I literally only did it because the least affected part of me were (unusually), my fingers - so I could just about type. Then I got addicted. I've just finished my first novel - a dark and gritty Young Adult fantasy fiction tale filled with secrets and lies and terrible betrayals. It's been the perfect vessel to distract me from the trauma of the last few years - a whole, expansive inner world that I created because my external one wasn't so great. It's found me some new friends too (real people, not fictional ones!), and its title, 'The Boy Without Wings,' was the inspiration behind the name for the charity. You can find out more about my writing at jackiemorreygrace.weebly.com If there is one good thing that has come out of being sick, it's definitely learning to write. It's the best thing I've ever done.