Jackie Morrey-Grace – Without Wing’s Founder, Trustee and Chair.
Trustees Laura – left and Jackie – right
Hi, I’m Jackie. I’m a piano and brass teacher and also a writer. I was diagnosed with a particularly aggressive onset of seronegative arthritis (spinal and peripheral joint disease), in late 2013. This was after many months of severe pain and immobility that left me unable to do even basic things for myself, like get a glass of water, dress, bathe, turn over in bed or even chew. Despite all this, the diagnosis came as a complete shock. I had visited at least 14 different medical professionals – including A & E, and all more than once, before the last GP finally realised the severity of my situation and referred me to a rheumatologist. There i was told I was “one of the worst onset cases that had been through the door in years.” The result of this – plus the delay in diagnosis, was a terrifying amount of – to be lifelong and escalating, ‘aggressive’ medication, and the prospect of a much longer – if ever, recovery. I thought my life was over.
There is no doubt in my mind that one contributor to my delayed diagnosis, was the lack of education regarding these illnesses. I honestly thought – as I know most people still think, that ‘arthritis’ (even rheumatoid), was a disease of ageing. Having an ‘arthritis’ diagnosis in my 30s, with three children in primary school and when only a short few months earlier I’d been prepping to take part in the Adventure Race, was not part of the plan. In fact, even now, I still hate the word with a passion and feel an unbridled and probably completely irrational fury when people tell me I’m “too young to have arthritis.” And of course, I wasn’t too young – autoimmune arthritis are diseases of the immune system and they can strike anyone of any age with approximately 80% of disease manifestations striking people of childbearing/ working age – even children! At a time when your life should be – and significantly, the lives of your peers is, in full flow, it can be utterly devastating to find yourself left behind.
Without Wings is therefore the charity I wish I’d had to see me through the many, many treacherous days of the last few years. Through raising awareness we hope people are diagnosed earlier and receive the help they need faster – as well as better support from better educated peers. Through providing information, we can link people to the most useful services available, from benefits, support groups and proven useful healing methods, to inspirational stories. The compassionate services we have chosen to help fund are exactly the ones I needed – and either couldn’t afford – because let’s face it, being sick does little for your bank balance! Or didn’t know about/ how to access, or felt I couldn’t ask for because basically I felt humiliated enough by what I perceived as my physical failure.
We’ve aimed to do it in a really beautiful way. For example, our fully funded counselling initiative is in conjunction with the amazing Lisa Lowe Centre – the friendliest and most cosy outfit in town. This service is available for both sufferers and loved ones – in recognition that an autoimmune arthritis diagnosis can affect the whole family. Our big plan is to raise enough funds and work closely enough with other bodies to ensure we can also offer an automatic home visit from a trained counsellor for anyone going through diagnosis. For people who favour different types of support, (for me, still grieving for the loss of my fell running abilities, it was the anti-gravity treadmill and the incredible support of my personal rehab trainer, Andy Parker RIP, of Gym and Tonic), we can offer discretionary funding towards accredited complementary health support, or physical rehabilitation – like yoga, pilates or swimming. We can also provide discretionary funding for physical aids and for short term home help – because often it’s the simplest things that make the difference – like having a clean home when you’re most incapacitated. We can also offer funding help/ liaise with the Government if your garden gets unruly – or even, in fact, if having a tidy garden (obviously size depending!) once in a while boosts your morale when you’re too sick to do it yourself.
I deal with my condition well now – through a combination of medication and the Paddison Program for Rheumatoid Arthritis – which, along with my wonderful husband, Ed, has been my lifeline these last few years. Tales of the Unexpected: Healing Against the Odds was a sell out last year and one of Without Wing’s highlights. If you are keen to find out more about the gut healing benefits of a plant based diet, keep an eye out for Tales of the Unexpected : Healing Against the Odds II, that will take place on July 22nd. It’s looking all set to be a fantastic event!
Without Wing’s goal is simple: To provide compassionate support to local sufferers of autoimmune arthritis. If you need anything, please get in touch.
Laura O’Reilly – Trustee
Hi, I’m Laura and I’m a Trustee for Without Wings. As well as playing the piano I love the outdoors, especially kayaking, sea swimming with my two kids and mountain biking – which is how I became friends with Jackie. Having witnessed first hand how quickly autoimmune arthritis can devastate someone so fit and active, it was a great honour to be asked to be a Trustee for Without Wings. I especially enjoy helping out at fairs but also love being part of the decision making process.
Suzanne Wild – Trustee & Secretary
Hi, my name’s Suzanne. A working mum of two, I balance the usual juggle of day to day life with trying to get out into the fresh air as much as I can. I’m a member of the local fell running club and enjoy a bike ride or just walking the dog. I’ve been on the island for ten years now and it never fails to delight me with its beautiful varied landscape and rich community. Being such an active person myself, I know how much I value my ability to move freely, and have seen with my own eyes how cruel these illnesses can be. Apparently I’m the ‘Devil’s Advocate’ Trustee – which I’m assured is a good thing! I loved our Tales of the Unexpected Event and I’m really looking forward to the next one in July!
Sue Grace – Trustee & Treasurer
Hi, my name is Sue. I am retired but very busy with family, golf and other organisations, including being secretary of “Friends of Noble’s Hospital.” I am very pleased to be a Trustee of this wonderful charity, ‘Without Wings,’ which my daughter, Jackie has formed after suffering so badly with autoimmune illness. My husband and I are very proud that she is working so hard to help other people in a similar situation. I have thoroughly enjoyed helping out at all our events and really enjoy being Treasurer.
Steph Begbie – Volunteer
Hi, I’m Steph. I’m a busy mum of two and have lived with Psoriatic Arthritis since 2009. I have had a hip replacement and have tried a range of treatments. I am passionate about complementary therapies and diet to help live as full a life as possible with a chronic disease. I am very passionate about Without Wings. Receiving a life changing diagnosis and learning to live with chronic illness can be so traumatic. I wish I’d had this resource when I was first sick. So far I have enjoyed helping out where I can, and am looking forward to organising my own charity fundraiser later this year!
A Special Mention
Our logo was kindly designed and donated by Michele Clausen. Michele, who also lives with RA, resides in New Zealand with her husband and very cute dog. Our frequent colour re-masterings are by another, more local graphic designer, Darren Prior. Darren has also been kindly donating his skills.
We asked 3 year old Isaac Megson, and his mother Nicola, to name the bird on Random Acts of Kindness Day 2017. Isaac was diagnosed with JIA aged only 1. He has chosen the name… Lula!
You can read more about Isaac and his family, along with other Inspirational Stories by clicking on the button below.