First up... Congratulations to Nicola Kermode who just raised £260 for Without Wings by doing the Parish Walk! Thank you so much Nicola! What an amazing effort. It was also an incredible personal achievement for Nicola who has both Lupus (SLE) and Sjogren's. A wonderful well done all round! If you still wish to donate, you can find Nicola's just giving page here... In other news....
This is the first proper blog in a while and we have SO MUCH to talk about! Ok... so JULY! Without Wings have booked a stall for TYNWALD DAY, 5th July! As well as selling fruit smoothies, we will also be running a colouring/ decorate the Lula competition! This is mainly for kids of course, but big kids can get involved too. The comp will be judged by 2 local artists, including Alice Quayle, who will also have a stall at Tynwald on the day. The winning picture from the under 16s will be used as Without Wing's SUMMER FACEBOOK PROFILE PIC! Any adult winning picture will get a one week cameo the first week of September. It's just a bit of fun, but with the added benefit of helping to raise awareness of these diseases. We are hoping to get the black and white image launched on Facebook before the event, just in case you wanted a leisurely attempt at your masterpiece. A photograph of the end result can then either be emailed to us, or you can deliver the original to our stall, but MUST ARRIVE BEFORE 3PM! Entries will cost a £1 on the day, to cover the cost of art materials. SUNDAY JULY 23RD, 7.30PM AT NOA BAKEHOUSE! TALE OF THE UNEXPECTED: HEALING AGAINST THE ODDS Tickets £12 (under 16s go free). (Available on our homepage) ***CHECK OUT OUR FACEBOOK PAGE, AND ALSO OUR ARTICLE IN NEXT MONTH'S MANX TAILS AND HAVE A GO AT THE COMPETITION FOR YOUR CHANCE TO WIN 2 FREE TICKETS! *** ***Closing date: 12th July. Full reimbursement to the winner if tickets already purchased.*** This event is SOOOOOOO exciting! PLEASE PURCHASE YOUR TICKETS SOON! It's also completely non-profit. Without Wings are underwriting the occasion as part of our information drive, but neither Danny nor Andy will be taking a fee. The tickets are £12 to cover costs. Please please come along. Natural healing is not for everyone, but if you really want to give it a go, you can't put a price on how valuable the information is that these guys have to share. Both Danny and Andy are now completely medication free, pain free, and full of massive energy! They are also just exceptional and wonderful people who have worked very hard to achieve something remarkable, and, they have a LOT to say! Without Wings are also hoping to publish an interview with the man himself - Clint Paddison which we'll share on our Facebook page. Clint is the devisor of the natural healing programme that Danny and Andy have both followed. He has been completely free of RA for over 5 years, living a full and normal life! In other news... Patient Participation Awareness Week! Yes, that's THIS week! So what is it? Dr Phil Hammond, GP and broadcaster, says this: "Patients and carers are the smoke alarms for the frontline of the NHS. They are often first to spot poor care and also have great ideas about how to make care better. They need to be involved in decisions not just about their care, but in designing better care for others." One thing Without Wing's is passionate about, is INFORMATION for sufferers. It is this that has been the drive behind our recent talks with MHKs and the Department of Health. As representatives of these illnesses, we want all patients to have access to an integrated care document, one which outlines what services are provided both via the NHS and affiliated charities. Currently no such information exists. Not only can this be bewildering and frustrating for patients, but also means that they can miss out on the services provided by 3rd party support - such as ourselves. We strongly believe that a comprehensive care package should be an ESSENTIAL part of the autoimmune arthritis health care kit. To make this a reality however, we need YOU behind us. What would you like to see in such a document? What NHS/charity information and services have you discovered along your autoimmune arthritis journey that you believe should be highlighted for others to see? LET US KNOW! Without Wings is 100% committed to easing the stress for people living with these illnesses. We can't guarantee anything, but we also won't give up on this one. BE HEARD! This charity exists for YOU! See you soon everyone! July 5th and July 23rd! We can't wait!
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Quick update on events! Firstly, tickets are now available here... for our event on Sunday 23rd July 7.30pm at Noa Bakehouse, Douglas! Tales of the Unexpected: Healing Against the Odds Featuring Danny the Champion of the RA world - whose inspirational story can be found here... and Andy Swarbs, PsA and RA conqueror Story coming soon! So... Is it really possible to recover naturally from progressive autoimmune illness? Or indeed, to PREVENT such illnesses - and others, from occurring? Without Wings will be putting this very question to these two incredible people who claim to have achieved just that! Intrigued? We are. In fact, we can't wait! So come! Be inspired, heart broken & heart warmed. There will be a panel discussion at the end, a smoothie demo and some food tasting... You can ask these guys as many questions as you like. They have assured us that they have LOTS of answers! We currently only have 60 tickets for sale and interest is HIGH so Book early to avoid disappointment. Tickets are £12 per person (under 16s go free) It's all set to be a fantastic evening. In other news:
Without Wings have a stand at Tynwald! Come and find us and say hello. We'll be selling fruit smoothies and have a creative 'decorate Lula' comp for the kids! We also have a couple of fun games up our sleeves so see you there and bring the sun! Unfortunately, it's with a heavy heart that we have decided against the Carnival this year. By a stroke of bad luck it clashes with not just one, but two other community events that we, as parents with growing families, feel an obligation to support. That's all for now! We're enjoying a peaceful June, all bar a few bikes! Stay safe everyone and we hope you've all had a very happy and healthy TT! ***THANK YOU PIGS ON THE WING!*** Wow! Without Wings are so excited to announce that last Saturday's Pigs on the Wing gig raised a grand total of.... DRUM ROLL!!!! £1617!!!!!!! FOR WITHOUT WINGS! What's more, Without Wings didn't actually realise until the night that the band, and their support team, were also donating their incredible talents, and had been doing throughout their entire 'Points of the Compass' Tour. We just thought we'd be shaking buckets, not taking a huge share of the ticket sales too! AMAZING! And hugely appreciated. This money will go a long way towards helping us establish our all important business plan for the Department of Health, and to ensuring everyone who approaches us can receive the support they need. Thank you too to everyone who turned up to support us and, what was a fantastic gig. In other news...
Lots is still happening in the world of Without Wings as we continue to work hard to get our charity firmly established. Things are also settling too, so from now on our blog will be reduced to a calming 'once a month,' with the occasional guest blog thrown in-between. For today though, we still have a lot of news! First up: last Tuesday, Jackie, our Chair, featured on Manx Radio's 'Women Today,' officially launching our Mental Health Safeguarding Initiative. This, we had especially prepped in time for Mental Health Awareness Week. Thank you to the Lisa Lowe Foundation for helping to make our initiative possible, and a big thank you too, to Manx Radio's lovely Christy and Beth for the opportunity to announce this publicly. They have proved to be a wonderful source of support to our charity and we are very grateful. It appears our information hit the right mark. Without Wings is very happy to say that post interview we received lots of messages of support and interest. Finally, awareness of these illnesses is being spread, and people living with these conditions are beginning to find access to the help they need, when they most need it. Now all we need is to KEEP RAISING FUNDS! We've done well so far but need to raise much more if we are to ensure that everyone who approaches us can be helped, whilst also continuing our awareness and information raising campaigns! Speaking of which, though June is set to be fairly quiet, July is not! July 5th - Without Wings have secured a stand at Tynwald! Currently our plan is smoothie sales and some kind of craft for kids based around Lula, our beautiful logo. We also have a couple of amusing ideas up our sleeves to entertain everyone - EVEN IF IT'S RAINING. Which, of course, it won't be. Come and find us!!! July 17th - Douglas Carnival! Currently we have done absolutely nothing about this, but it is still in the calendar as Without Wings firmly believes it will be fun. And fun is something all people living with these illnesses deserve to have. The big plan is to invite anyone and everyone to help us build our massive bird, then join us on our massive float. Logistically, it's possibly a nightmare, but we are certain ALL WILL BE FINE! Keep an eye out for updates! July 23rd - Noa Bakehouse, 7pm. TALES OF THE UNEXPECTED: NATURAL HEALING AGAINST THE ODDS. Is it really possible to recover naturally from these often debilitating and crippling illnesses? Without Wings will be putting this very question to our two speakers. Danny the Champion of the RA world, is coming all the way from the Netherlands to talk to us about how he managed to 'crush' his RA through diet and exercise. Uk based AndySwarbs, PsA, RA and osteoA blogger, speaker and general arthritis King tells a similar story of how he went from wheelchair to bikram yoga obsessive ON NO MEDS! These guys are an inspiration. Like so many people who suffer from these, or any other serious, progressive autoimmune illness, both have been through incredible hardship. Andy in particular, has not escaped unscathed. Yet, through exceptionally hard work, constant troubleshooting and discipline, they have both managed to turn their health, and their lives, around. Without Wings is in awe and cannot wait to hear what they have to say. Hopefully they will have something to teach us all. Tickets are £12 a head. If any under 16s want to attend, they can free of charge - so long as they promise NOT TO EAT ALL THE RAW VEGAN CHOCOLATE CAKE that we also plan to have on offer (I'm sure we'll be safe. We'll just tell them it contains beetroot). Danny will also be doing a smoothie demo/ tasting and there might be some other interesting nosh there too. Nettle soup anyone? At the end there will be a panel discussion, so plenty of opportunity to really get to the bottom of HOW DID THEY DO IT??? It should be an informative and fun evening, so please, please, do come along. Education is freedom. ***Disclaimer: In relation to natural healing, Without Wings would never advocate altering medication without full knowledge and consent of your health care provider.*** ***NEXT WEEK IS MENTAL HEALTH AWARENESS WEEK*** In line with this, as promised, Without Wings has been working SUPER hard to develop our initiative to provide swift and open ended counselling to all people living with autoimmune arthritis, including loved ones. Read on to hear all about our exciting plans, especially our AMAZING new partnership with the INCREDIBLE Lisa Lowe Foundation (previously Manx Cancer Help.) Jackie is back on Women Today, (Manx Radio) May 9th to discuss her own battle with mental health issues. And happy May the 6th for anyone attending the last of the Pigs on the Wing Compass Tour this Saturday. If you haven't heard it on the airwaves, we are very excited to say that Without Wings is the nominated charity for this event! Many, many thanks to Pigs on the Wing, a fantastic, if not possibly an iconic local band. If you are able to make it, we’ll be there with our Without Wing’s charity buckets. Please come and say hello, even it we can't hear you :) ***MENTAL HEALTH AWARENESS WEEK*** Without Wings is SO EXCITED! Over the last few weeks we have been working super hard to formulate our most prominent drive: to ensure the availability of swift, open ended counselling to all people in need who live with autoimmune arthritis. This includes loved ones who might find themselves in a supportive/ caring role.
Firstly, we are incredibly grateful to Dr Alex Allison MHK, for suggesting we hook up with the Lisa Lowe Foundation - previously Manx Cancer Help. This wonderful charity share many of our ideas and initiatives, - namely, a commitment to positive and compassionate living and the provision of excellent and swift support to those in times of need. They also have a powerful 10 year plan that will change the face of mental health support and provision on the Island immeasurably. As well as being able to tap into their psychological support services, Without Wings are incredibly proud to say that we have been invited to be involved in their 'open door' programme in the perfectly named 'Hope Street' in Douglas. This will be a lunchtime project when anyone, with any ongoing stress/ distress issue - be it disease related or not, will be able to come and talk in a safe and comfortable environment with trained personnel. For sufferers of autoimmune arthritis, Without Wings hope to provide a once weekly presence where sufferers - and their loved ones, can come and voice any concerns they have regarding their illness, or indeed any other issue. No one needs to be experiencing severe difficulty to attend this project. It is available to anyone who just wants to chat or see a friendly face. This partnership will of course have the added benefit of raising Without Wing's profile, which in turn will help us develop our all important business plan to prove our long term sustainability to Government. In doing so, our services can be recognised as part of a pathway of integrated care through GPs and the hospital, via the Department of Health. Phew! It's been a lot of work but it is coming together! Please keep supporting us. Please keep liking and sharing our Facebook posts and if you're planning a sponsored event please keep us in mind. Every little helps and our next step is to raise serious funds to make sure that no sufferer of autoimmune arthritis need ever feel alone and unsupported. Happy Eastertime from all of us here at Without Wings! A few of us will be meeting for a low-key RAmble, April 30th 10.30am, Ballaugh. Please contact us via Facebook if you would like to join. It is anticipated our first RAmble will be a quiet affair, so we would love to see you! All welcome, including friends and family. If people wish to come who are very incapacitated please let us know in good time so we can change the venue to one that is more autoimmune arthritis friendly! We hope you've had a wonderful Easter break and are all looking forward to the lighter evenings along with that extra fix of vitamin D. It's been a whole month since Without Wings blogged last and we have so many exciting things to tell you!
First off, leaflets, posters and business cards are finally here. The business cards should have gone out to GP surgeries, so please let us know if there aren't any visible at yours. The rest will be delivered via the next nurses' quarterly meeting. Secondly, Without Wings has been working hard on our counselling initiative. In discussions with the Department of Health, it was brought to our attention that NICE guidelines 'recognise a pathway for psychological intervention for sufferers of arthritis.' Presently however, in relation to this, it has been agreed that there is a 'service gap' on the Island. It is this that Without Wings has been designed to fill. The current lack of a comprehensive support structure for local sufferers, has therefore led to some very positive talks with MHKs, the Department of Health and other useful bodies. Presently, statistics state that 20% of people receiving a chronic diagnosis (not exclusive to autoimmune arthritis), will go on to experience severe mental health problems in relation to their illness. In reality, this is likely to be a much higher figure, as many people choose to suffer in silence. At the very core of Without Wing's work is a belief that not only is it possible to live well with these illnesses, but it is a person's right to have access to the correct type of support to ensure this becomes a reality. The Department of Health are in agreement with us that this is not a matter for NHS mental health services. Rather, the provision of appropriate psychological intervention, whenever necessary, in relation to the illness, should form part of a pathway of integrative care right from diagnosis. This type of support can therefore serve as a preventative, as well as a therapeutic, measure. This is crucial. Better coping strategies and a strong sense of support have been proven to lead to better outcomes in physical health for people with progressive autoimmune illness. Without Wing's main focus for the next few months will therefore be on developing a business plan to prove our sustainability. This will ensure that everything we are working hard to put in place is easily accessible via your GP surgery or the hospital. We have already set the wheels in motion for this. Without Wings are in the process of drawing up an agreement with the Lisa Lowe Foundation. This amazing charity already have beautiful premises in Tromode and a fully accredited counsellor at their disposal. They have agreed to allow patients with autoimmune arthritis access to this service. The proposal is that these counselling sessions will be funded by Without Wings, will be open ended and available to the whole family unit. We are so incredibly grateful for this wonderful opportunity, and very much looking forward to building this partnership as time moves forward. Our next two bigs goals are therefore: 1. Continue to raise our profile, 2. Continue to raise enough funds to satisfy a 3 year business plan that will cover the costs of this service. Keep your eye on these blog posts for further developments! In other news: Many thanks to Mike Kewley, local mindfulness meditation teacher, for donating his knowledge in our last bi-monthly blog! If you missed it you can still find it below. Mike runs tonnes of workshops. If you're interested in his work then you can find out more about it here: https://www.facebook.com/groups/mikekewleymindfulness/ Pain monitoring soft toys are now in production! Commissioned with the very young in mind, these cuddly Lulas have 6 detachable feathers to help describe pain levels. They would, however, also be suitable for anyone with these illnesses who has communication difficulties, such as people with special needs or with dementia. Please let us know if you would like one. Each one has been kindly produced and donated by In-Stitches, local soft furnishing company. You can find more about In-stitches on facebook: www.facebook.com/InStitches2016/ Last, but certainly not least, we have heard from one of our local sufferers who is in hospital at the moment due to complications with their illness. Our hearts go out to them and their family, and of course, a big, 'get well soon.' The first of our guest blog posts! Mindfulness Meditation and Pain By none other than our awesome, local mindfulness teacher, Mike Kewley. Please see Mike's website, www.myfreemind.org for more information about his fantastic work. How to be Hit by an Arrow By Mike Kewley Yes it hurts, but the trick is not minding that it hurts. - Peter O'toole as Lawrence of Arabia.
How we relate to being ill is a good example of the way we fight life when it suddenly stops doing what we want it to do. We struggle with illness simply because it’s something we would never choose to experience. Being consciously ill – which means to fully acknowledge how we’re feeling – is always counterintuitive because we're afraid of the consequences of letting go into pain and discomfort. Observing what happens if we do let go into our moment to moment experience, with eyes wide open, is the goal of Mindfulness practice. It is the adventure of letting go, on purpose, into this incredible ride we call life, regardless it's content. This is why Mindfulness is a practice for grown-ups. It’s not about chasing special feelings, or expanded states of consciousness, but about meeting your life as it is, because your life is what you always return to. We don’t have to like our experience, but we do have to accept it simply because it’s already here and no amount of imagination can make it disappear. Indeed trying to avoid what is already happening is a kind of madness. It seems like it just might work but it doesn't. The struggle simply adds extra weight to our suffering. Buddhism illustrates the way in which we exacerbate our own suffering with the story of the second arrow: We're walking along peacefully when we're suddenly hit by a poisonous arrow. We now need to pay attention to it, pull it out and live. But there is a second arrow ready to fly: our reaction to it. “Who fired it? Why me? I knew this would happen! I’m really angry now, this wouldn’t have happened if…” Instead of responding with clarity and focus to the first arrow, we become embroiled in the drama of our own reactivity. In fact the story tells us that the second arrow – the one we shoot ourselves with – is more poisonous that the first. So the next time you’re experiencing physical discomfort, try the following exercise to ease your reaction to it. The point of the exercise is to see what happens if we gently allow ourselves to feel, know and allow uncomfortable sensations, rather than block them off and shut them out. It works by really allowing ourselves to focus on the shifting real-time sensations of discomfort (the first arrow) rather than the stories about them playing in our head (the second arrow). Through this simple explorative practice intense sensations can soften, dissipate and even disappear. So sit comfortably, drop your awareness into the body and experiment with asking the following questions, listening to your body for answers. Close your eyes whilst focussing single pointedly on the sensations and see what you can discover. Do it with an open mind, no expectations and a sense of play. Spend a few minutes with each question, before moving onto the next one: - Where is the pain right now? - Does it have a colour? - What does it feel like? (pressure? throbbing? tingling?) - Does it move or is it still? - Is it solid like concrete or fluid like water? - Can you find the edges? - Can you find space or distance around it? If so can you stay with the sensations of space or distance? - Is the sensation constant? or does it come and go, increase and decrease? - Can you find somewhere in the body that feels good or relaxed? If so can you switch attention between the discomfort and any pleasant or neutral sensations? - Is the pain or discomfort something you are actively doing, or is it something the body is doing all by itself? - Does it have a centre or a source? - What happens when you direct an attitude of kindness towards the discomfort? (here we can say ‘May you (sensation) be happy, healthy and well’). - What happens when we direct the breath into it, flooding the sensation with breath? - What happens when we say “Yes” to it and allow it to be here, as life? - Can you hold the present moment, and all sensation, in awareness, allowing it move, flow and be felt, without interfering? - Can you be with this moment, just as it is? By exploring our sensations with mindfulness, awareness and kindness we can transform the ways in which we experience ourselves, others and life in general. We become skilled at allowing the many flavours of the human experience – good, bad and ugly - to arise and fall within us, without becoming entangled or overwhelmed by them, like waves moving across the ocean. The waves come and go, the ocean remains. ***STOP PRESS!*** THE HAXBY FAMILY HAVE ORGANISED A CHARITY CAR WASH AT THE GRANDSTAND THIS SATURDAY, 10am-4pm. ALL PROCEEDS WILL BE IN AID OF WITHOUT WINGS! THANK YOU SO MUCH CAT, 9 YEAR OLD RIO (who lives with JIA), AND THE REST OF YOUR WONDERFUL FAMILY! PRICES START AT £5 SO PLEASE POP DOWN IF YOU WOULD LIKE YOUR CAR WASHED! IF YOU DON'T YOU CAN ALWAYS DONATE ON CAT'S JUST GIVING PAGE HERE: www.justgiving.com/fundraising/Cat-Haxby Happy Springtime everyone! Welcome to our latest blog and here's hoping you've all popped up the mountain to enjoy a bit of seasonal snow!
Although JIA awareness was our February campaign, the JIA affected families are still ensuring it continues to tick on! Well done to Cat and Rio for organising the above event! We are so grateful - and thank you too, Cat, for promoting Without Wings on Manx Radio today. The Megson family also wanted to share their story, so fingers crossed, this should be appearing soon in a paper near you :) This month has been relatively calm otherwise, giving us time to sit back, organise a few loose ends and also begin to plan for forthcoming events. So here's what Without Wing's have been up to throughout March! AWARENESS! Calling cards were recently sent to the latest GP meeting, so hopefully these will now be in a surgery near you! They are something that anyone who wishes to know more about autoimmune arthritis and Without Wing's work - sufferers, their friends or family members, can pick up and stick in their wallet. As well as website and Facebook page details, they also contain our email address and are instantly recognisable by Lula, our beautiful bird. Incidentally, Lula, it would appear, is a bluebird! As such she represents happiness, wellness and Spring :) So here's to all of that! Leaflets and posters are now prepped too and coming soon. A lot of thought had to go into these as they needed to be correct, so they've taken a little longer. They will also be handed out to GP surgeries and other public places, and, of course, will be taken to the hospital in due course. Please let us know if you haven't seen anything in your surgery by the end of April! INFORMATION! The next batch of information we will be adding to the website, will be about benefits. Though something I'm sure most of us hope we never have to resort to, one of our wonderful supporters who lives with PsA, suggested it would be useful to have concise and relevant information all in one place. We are therefore currently organising this. Also, for anyone interested in how to help themselves deal with these diseases naturally/ prevent more inflammatory illnesses, Danny Preil from the Netherlands is now booked to come and talk in July! We have set the date for his talk as Sunday 23rd of July, and are now in the process of finding a venue. More information to come on that soon. We are also very excited to announce that Danny, who you can read more about under our 'Inspirational stories', will be joined by Andy Swarbs! Another natural healing success story, Andy lived with both PsA and RA for many years before changing to a low fat, plant based diet with the Paddison Programme for Rheumatoid Arthritis. Whilst natural healing might not be everyone's cup of tea, the tales these pair have to tell are certainly intriguing and we very much hope you will join us! FUNDRAISING! Thanks to a generous donation from Celton Manx, we have now set up a Just Giving page. Thanks to another kind donation here and the hard efforts of Cat with her charity car wash, the page is proving really worthwhile! You can find it here: www.justgiving.com/withoutwings Fundraising is essential to our long term plan for the charity. Although, of course, our main focus is on people living with these conditions, these illnesses can frequently be stressful for everyone involved. Without Wings feels our role will therefore eventually develop into a structure that can offer support to the whole family unit. We are currently initiating discussions with MHKs regarding this initiative and will keep you informed as our ideas evolve over the next 12 months. Presently it involves a bit of tweaking, a lot of planning, and lots and lots of fundraising! Thank you to everyone who has liked and shared our Facebook posts by the way. We are so grateful. Please, please keep doing so. Better awareness means essential earlier diagnosis and treatment. Better awareness also means more support and understanding, and less confusion, frustration and isolation for sufferers, their friends and families. Happy Spring everyone! Happy National Bed Month (yes - it really is!). In response to this, Without Wings wanted this month’s musings to focus on useful bits regarding sleep, fatigue and RA related conditions. Then, last Friday, disaster struck and it suddenly felt like the right time to kick start some personal blogging. This one’s by me, Jackie, Without Wing’s Chair, but we’ve also got some other guests lined up over the next few months, including one of the Island’s leading Mindfulness teachers, Mike Kewley. So stay tuned!
Last Friday I did something that seemed like a good idea at the time, but wasn’t. To put this into context, just over 14 months ago I suffered a probably RA related, suspected pelvic ligament collapse. Apparently due to some kind of hypersensitive connective tissue disorder, this has been neither fun nor helpful to having a volatile autoimmune illness. But last week, maybe because the sun finally came out, I started to feel the first real signs of actual improvement, and… did something I probably shouldn’t have. The result: three days and nights (plus!) with my back in complete spasm, and, thanks to the pain, I was unable to sleep! Which gave me lots of time to think! So here, I present: some personal nighttime musings… Actually, not sleeping doesn’t (overly) bother me. As an ex professional insomniac, I learnt a long time ago that insomnia, anxiety, tinnitus and fatigue were all perpetuated by my dysfunctional relationship to them. In the end I discovered that starving these demons of attention, as opposed to constantly pandering to their needs, was all they needed to go away. I say ‘all.’ In fact it was the hardest thing I’ve ever done. However, unlike the hundreds of therapies I tried that insisted I engage with these problems, starving them worked. And so it occurred to me, as I lay there awake and in discomfort for yet another night, that I’ve never succeeded in applying this method to the pain cycle. Because surely this is similar? I’m not talking about a major flare here or a broken limb - problems that require immediate medical attention, but I was wondering about everyday RA pain and discomfort - and all the constant piling up of associated problems that tend to affect people living with these illnesses. The question is semi hypothetical. RA related pain is complicated and dependent on many systems in the body - most notably our genes, gut health and fitness levels in general. However, when I really sat up and examined my relationship with pain, and, by default, my body, I discovered it to be really quite toxic. For example, I bitch about my body’s various failings regularly and have a thousand different terms to negatively describe it. In fact, when I thought harder about things, I realised that in relation to my body, I was a bit like a member of the SS - and this as someone who prides themselves on never treating others badly! So surely - just as people who bitch and complain constantly about others tend to have poor inter-personal relationships, it might suggest that I have, possibly, built up a poor relationship with my body. I wondered then whether or not breaking this habit could help my pain levels? After all, my earlier experiences with health issues really do echo the old adage, what we resist persists and I am certainly a genius in resisting pain! So the end result of all this? I decided to make a firm commitment to two things. One, I decided I was going to try a bit of acceptance therapy. If it works for sleep, then perhaps it could work on this too. If nothing else, perhaps it would reduce my stress levels! Because ultimately, our bodies don’t mean to fight us - not really. Pain is just the body’s clumsy way of communicating, and, unfortunately, from a very young age we are taught not to listen, but to react against it. Secondly, I decided I was going to start focusing on the positives in my body - because really, it has done very well so far with this illness - compared to how sick I was initially. It’s doing OK, responding positively to good food, meditation, hydration. When I can move well and step up the aerobic exercise, the RA side of things responds spectacularly! In fact, my body has proved to me time and time again that it can, and wants to be in a state of balance — be it from anxiety, insomnia, or even RA. So I sat quietly and meditated on what was going on and a striking image came to me almost immediately - of a subconscious mind smashing plates! And then I remembered something I had read about the subconscious mind being very simple and having no sense of humour and I thought, that’s it! Each time I tell my body it’s failing me, my subconscious smashes a plate - not to be horrible, but because it thinks that’s what I want it to do! Anyway, who knows whether it was because of this or not, but I gave it a lot of love instead, and, thankfully, the back spasms have now almost completely vanished. So now I’m just left with the usual - a recovering pelvis and RA stuff. But I’ve been left with something else too - a decision to stop the fight and a firm commitment to finally give my body more of the respect it deserves. After all, what do they say, an eye for an eye and the whole world goes blind. Anyway, that’s all from me. Enjoy the sunshine everyone! We deserve it! Good evening! Here's hoping that everybody is safely tucked up at home on this stormy night. Brr!
The last few months have been an action packed time for Without Wings. Now we've been up and running with the website for a few weeks, and things are finally beginning to settle into a more cohesive rhythm, it feels a good time to take stock. Firstly, many people are asking about groups/ support networks. We have shared information regarding existing groups on our information page and are trying to keep on top of any local meets via our Facebook page. Please please let us know if we've missed anyone off. We have also thought about what style any Without Wing's meets might take. In line with our 'positive living' agenda, we have therefore decided that really the key word here is inclusivity. This means that any meetings will be: 1. open to the extended community of people affected by these illnesses, including family and friends 2. fun/ interesting. Some time around Easter we will therefore experiment with this idea by holding a Manx RAmble in one of the plantations. This will be followed by soup and rolls (tbc). Please let us know if you think you might like to attend - either alone or with your children/ partners/ grandchildren/ close friends, so we can start thinking more clearly regarding a venue! We would love to hear from you. Next up - our blog! Now things are settling down we're going to experiment with writing the blog every other week - not every week. We are also looking to invite in the occasional guest blogger... So keep watching this space! Thirdly, back when we had our press release in January, several families of children with JIA (juvenile idiopathic arthritis) came forward and formed a little group. When we asked this group what they really needed and where we could help, the answer that came back loud and clear was 'AWARENESS!' And so came the idea of a February JIA awareness campaign. This week really saw the campaign get off the ground. On Tuesday, JIA group representative, Cat Haxby and Without Wing's Chair, Jackie, joined forces and went on Manx Radio's Women Today programme! You can listen to their collective interview here... http://www.manxradio.com/radioplayer/od/6678/ until next Monday. Cat is mum to 9 year old super champ Rio. She is also planning a charity car wash end of March at the Grandstand in aid of Without Wings! Details to be confirmed. Cat and Rio were also the faces behind our 'Inspirational Story' last week. Then, to top all of this, Without Wings invited one of the Island's youngest sufferers, Isaac Megson aged three, and his mother, Nicola, to name the bird on our logo! We gave them a list to help them decide but in the end they chose their own and it was... Lula! We're delighted! We announced the name on Random Acts of Kindness Day. To conclude JIA awareness, we will hopefully be hearing more about Nicola and Isaac's story in the local press - details of this to be finalised next week! Lastly, we are always looking for inspirational stories as these are so helpful to people living with these conditions. In particular, we want to hear from people who have something positive to say regarding the following: 1. coping well in the workplace 2. coping well with a diagnosis later in life 3. coping well even when you've had one of these conditions for many years. 4. Tips on how to cope positively as a parent to a young family. That's all for now! Have a fantastic couple of weeks! Well today our website has been up and running for a whole week! We've received hundreds of views and dozens of supportive messages from both well wishers and people in need of our help. It's been brilliant to hear from you and good to be assured that we're hitting the right mark.
Lots of people are asking how they can be more involved or how we can benefit them. Please check out our homepage for more information on involvement and take your time to look through the whole website with regards to our help. Our calendar of events for 2017 is also on the homepage. We have tried to include a lot of opportunities for both awareness and fundraising, as well as one or two social occasions. Please come along and support these - we would love to see from you! First up on our calendar, there are several forms of autoimmune arthritis, but the most heartbreaking has to be JIA, or Juvenile Idiopathic Arthritis. Without Wings have therefore chosen February as the month to highlight awareness of this particular expression of the illness. Thankfully, JIA is quite rare on the Island - though of course this is irrelevant to those families living the condition. Early diagnosis is also essential. Some of you might have seen on the news this week the tragic case of 5 year old Mancunian, Kaden Hadfield, who died after systemic JIA went undetected. Our JIA campaign is also a direct response to those Manx families who have contacted us and asked for support. They have now joined forces to create the new Facebook group, www.facebook.com/JuvenileIdiopathicArthritisIsleOfMan/ Please pass this information on if you know any families in the same situation. Support is vital, not just for the families of under 16s, but also for those of older teenagers/twenty-somethings, who are still living with the effects of JIA. This brilliant new group will ensure that local families can help each other in a proactive way. As part of this month's JIA campaign we are also very excited to say that not only will JIA supermum, Cat Haxby, (she has 4 kids - including twins!), be sharing her inspirational story in our 'positive living' section, but will also be joining Without Wing's Jackie on Manx Radio's 'Women Today' programme, Tuesday 21st February 2pm! Stick it as a date in your diary and remember to tune in as it's going to be a fabulous show. There might even be a recorded cameo from 9 year old JIA champ, Rio! Other JIA initiatives are on there way so watch this space! In other news, we are pleased to say we have received some very generous donations this month from Zurich, local businessman, Mr Matteus Von Oers and Celton Manx. We asked Celton Manx to donate specifically for three causes. These being: Funds to help launch our counselling/ practical help initiative. Counselling costs around £50 a session. We plan to raise enough money for every local person struggling with these illnesses to have access to at least 4, fully funded sessions during periods of 'without wingedness'. It's going to take a lot of work to reach our goal, but there is now a small pocket of funds available for those in need. Please contact us if you feel this service might be of use to you. JIA awareness/ support (this includes support for older teenagers and twenty-somethings who are still living with JIA), Funding for a Just Giving page so people can get more involved and begin helping us raise more money! We intend for this page to be up and running within the next few weeks. Finally, we are constantly trying to update our 'information' page on the website. Whereas we cannot endorse private services, we do feel it's important to include those services that can directly be of help for people living with autoimmune arthritis. We will continue to add to this page as and when we discover more. And last, but not least, for those people who are following the Paddison Program for Rheumatoid Arthritis and looking for access to a hot room, please get in contact as we have a plan! |
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January 2018
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