***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!
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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! |
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January 2018
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