I thought I'd do an update post on my health, as it's been a while that I have properly talked about the situation. In fact, I'm not sure I've ever really put out there how much and how quickly things have changed. Last weekend... I couldn't walk. I couldn't lift my legs, lay down or move properly at all. I was crying in front of my husband, teeth gritted through fit-like spasms and the kind of pain I couldn't even try to describe searing through my back and legs. I needed to be dressed, I needed family to take my children to and from school, I couldn't bathe, I felt a burden and a failure. This is the first time I've been so honest about it.
Most of you know that after the birth of my second son three years ago I became quite unwell. I'd had a lot of odd things most of my life but it was post partum that my body really decided to rebel against itself. I spent the next 2 years going from hospital to hospital, consultants, specialists and clinics to finally be diagnosed with post partum Hashimotos Disease, Ehlers Danlos Syndrome H-T and Postural Orthostatic Tachycardia Syndrome. The big one of the three being the Ehlers Danlos syndrome H-T (Hypermobility type).
It's a genetic disorder which means my collagen is faulty. Collagen is present in pretty much every aspect of the body, so therefore, pretty much every aspect of my body is affected. It makes me hypermobile and stretchy inside and out. I've always had this and I have always had problems through my childhood, puberty and first pregnancy - however most symptoms, such as pain, bruising, swelling, subluxations etc were attributed to another odd condition I developed aged 6 (Henoch Schonlein Purpura). We never knew there was an underlying genetic fault running through my maternal line. Now, you can be hypermobile and have no problems with it at all. In fact for athletes and dancers it can be a wonderful aid. If however you experience uncontrollable joint subluxation and dislocations, pain, fatigue and dysautonomia alongside it (amongst other things - intolerance to local anaesthetic, heart problems, gastric issues) then it becomes something more than just a party trick. It becomes something you have to fight not to take over your life. I am struggling with that part right now.
I'm writing this today because I'm coming out of a really bad time, last weekend/week was horrendous. The thing is, it happened 10 weeks prior to me writing this now and it's pretty much on the cards that it's going to happen again... and again. Years of low level damage to my back, hips and other major joints mean they are weak. I do physio exercises most days and have taken up Pilates when I can manage it yet my decline is more rapid than I can try to claw back. My physio is concerned there may be spinal issues on top of hypermobility (my nan had to have a fusion) so I am seeing a specialist this Tuesday to see if anything else can be done to stop or help with this new debilitating aspect of my disability.
Personally, I believe the time may have come for me to look into some kind of wheelchair when I am coming towards/out of or smack bang in the middle of a flare up. This is a HUGE admission for me but you know what? It's one that brings relief to me, more than dread. It would mean I could take my children to school for the two weeks I'm usually out of action, it would mean I don't have to rely on (amazing) family members who already do their fair share in helping me out. It feels like a beginning rather than an end. I cannot live a life in fear of walking because of what it might do to me, I am petrified enough of experiencing that pain again when it comes around. The big question is will the professionals agree with me? Or will they see it as me giving up? After being diagnosed, I realised disability is so far from black and white, it's effectively rainbow. When looking for a cause or reason for our undiagnosed problems we focus so much on labels, comparable symptoms and statistics that emotion and personal feeling is shoved aside. When it comes down to the crunch, who ultimately decides what is right for my family and I? I shall see what Tuesday brings...
In the meantime, feel free to check out this link for more information on EDS. Cherylee Houston from Coronation Street (Izzy Armstrong) is a patron of EDS UK and has the same disability I have (so does her character on corrie). http://www.ehlers-danlos.org/about-eds-uk/our-patron
Do you live with chronic pain or a disability that affects your mobility? Do you use a wheelchair or mobility aid? I'd love to hear your comments and experiences.
I want to tell you a love story...
Crafting has always been something I have enjoyed from an early age. My memory of craft fairs however, is something I don't look back as fondly on. I felt a similar way about charity shops - cold, uncomfortable places which smelt of things I wasn't used to like lavender and weak tea. Cliquey environments, manned by stern-faced older ladies who would scowl at you for daring to touch a pair of pale green knitted booties*.
I'm sure more than a few of you feel a similar way, nose crinkling or feeling uneasy at the thought of stepping into a charity shop or spending an afternoon in a church hall filled with stalls. This is why I want to try and change your mind, as mine has been.
Local events like craft fairs are still trying to shake off that unfair image I painted back at the beginning of my post. Times have changed within the crafting community but it always takes opinion a while to follow suit, which is such a shame. I support and work within one of the most diverse and modern forward thinking industries - the craft industry.
I can't deny that the high street shopping experience is slick and streamlined, with a wealth of shops offering you products for pretty much every use... but most of it is unoriginal. It is saturated with trends and similarity. Buy something in a department store or a high street shop and you have to expect to see someone else wearing/using or talking about it at some point. Yes, it's easy to go out to your nearest big town and find a 'special' present for that momentous birthday, that unexpected wedding, to help that friend who's had a rough ride feel appreciated but again that gift will have more than likely been bought by many before you and many others after. Modern craft fair shopping is amazing. I won't play it down because it deserves to be shouted from the rooftops. You will find passionate business people who have created beautifully unique and quality items that aren't readily available in shops. People will talk about these pieces due to their wonderful individuality, not because they have the same thing at home in three different colours.
Not only will you find some fantastic gems at craft fairs, you'll be supporting local self-employed people. Fuelling and nurturing this aspect of our economy is vital, especially in the current climate. Personally, I feel a complete buzz knowing I'm buying something from somebody locally, who is making this work on their own. Connecting with the people who have put their time and effort into producing goods, rather than a faceless chain of shops, is just priceless.
I moved to Penge, from neighbouring Beckenham a good few years back. Beckenham has carved a great, local and supportive community and has made itself a pivotal part of Bromley Borough, which is fantastic. Penge has been struggling a little. Back to the beginning of my post I mentioned unfair images being hard to shake off - Penge suffers from this, too. On the furthest outskirts of the borough with a London postcode, we're often forgotten about as part of the bigger picture. My hometown has a reputation for the rough side of life; pawn shops, fast food chains and everything a pound. There's a lack of funding and focus is mainly pushed towards our bigger, more desireable siblings Beckenham and Crystal Palace. I felt Penge needed local people to come together and try to start carving out our own identity just as Beckenham had done before us. Talking to people around me, I noted we had a lot of families wanting to socialise, a great music scene and a fantastic lot of talented crafters. I started a Facebook page called SE20 Mums as I felt other groups were tailored to neighbouring towns with Penge as more of an afterthought. I also began helping out at a local playgroup. Around the same time, SE20 Craft Fair was launched. So my love story begins!
The SE20 Craft Fair was everything I'd wanted from a fair as a kid in love with crafting. It was energetic, bright, fun, modern and full of a wealth of delightful wares to spend an afternoon lusting over. From an adult perspective it was fantastic to be immersed in. Looking around there was such a great vibe, so much independent talent and positivity, smiling faces and delicious treats to indulge in. I was so happy to have an event like it in Penge, let alone be able to be a part of it after I started my own business making jewellery.
Christina Owen is the driving force behind the SE20 Craft Fair; I'd love for you to hear a little bit more about her and what she feels the fair stands for, so here is a mini interview for you.
Tell us a little bit about yourself
I'm a Paramedic who crafts in her spare time! I'm not very good at it but it's so different from my 'day job' and it helps me relax. I also take photographs, write, blog and am running Brighton Marathon this year. I am distinctly average at all of these things but I like the variety they bring!
What were your main reasons for starting the SE20 Craft Fair?
I had an exhibition of some of my photos in Penge at the end of 2011 and all the money I raised at that event was split between St Christopher's Hospice (in nearby Sydenham) and an unspecified art fund that I wanted to set up in order to do something creative in the Penge community. At the time Penge didn't have anything remotely like a regular craft fair (it now has two - mine and Anerley Craft Fair, as well as various other pop up events from time to time) and I knew so many local people who dabbled in arts and crafts but didn't have an outlet for their work or who were too shy to display/sell their products and I wanted to give them the opportunity and a friendly, relaxed environment in which to do that. The art fund ended up being called SE20 Art Fund and so it seemed natural to call the craft fair SE20 Craft Fair. It happened in November 2012 and was only ever going to be a one-off but after it went so well, people kept asking me to let them know when the next one was. So now we're about to have the 6th SE20 Craft Fair and there's already two more planned in for this year! It's very exciting. Crafters sometimes tell me that SE20 Craft Fair is their first ever craft fair and they use it to build confidence so they can grow and expand and that's exactly what I wanted. It makes me happy that they feel safe coming to our fair and trying things out for the first time.
Have you faced any difficulties starting up as a solo organiser?
It's quite tough because I work 12 hour shifts full time and so I can't devote the amount of time and energy to the fair that I'd like - if I wasn't working I'd probably try to make it a more frequent event than twice a year and I could certainly devote more time to things like advertising and publicizing, but word of mouth has been an excellent tool in getting news of the fairs out, and there are local organisations, like SE20 Magazine, who have been really supportive and always give the fair a mention in their news section. I'm also really lucky in that my family, local friends and the stallholders always really get behind the fair and give up their time to help organize and set it up. I do spend quite a lot of time begging favours off people and it's really nice that they always show up to help make the fair so amazing every time. Sometimes I get annoyed that I don't have unlimited time or funds to have a really big publicity drive but I guess if I did then it would lose some of it's 'community fair' style charm. I have accepted that I'm never going to have a massive glossy banner on the side of a building but then, that's not why people love coming to SE20 Craft Fair.
The SE20 Craft Fair is driven by local support and community, rather than profit chasing. Has this proven to be a bonus or a challenge?
It's both! It's a total bonus but of course this does throw up certain challenges because my craft fair budget for advertising and for decorations is virtually zero - although this encourages me to be creative and I am very lucky that I have people around me who don't mind printing posters for me etc. I've also in the past asked friends and relatives to make decorations for the fair and to send me any bunting they might have lying around. The fair has developed a huge 'make do and mend' attitude which I love - each fair gets decorated with whatever I have lying around and whatever people donate.
After the first fair I decided that if I charged a bit more for stall hire then I could have a bigger budget for things like posters and adverts in local newspapers etc - but doing so proved counterproductive as it put all the local, start-up crafters I knew off and attracted more 'hardcore' crafters from further afield, and then the fair ended up losing a lot of it's friendly atmosphere and became a much more competitive, pressured space to be in. After that fair happened and wasn't really a success, I felt discouraged and so I made a decision that going forwards, the price of a stall for the entire day would be £10 and I would never raise it. I make absolutely no profit from the fair - all funds raised in stall hire go towards the cost of hiring the hall and then back into the fair. And I wouldn't change that because I'm not doing this for profit. I'm doing it for the community and for the people who love crafting and need a platform to display their work, and also because I really love bunting and hand made things and I want to be surrounded by those things as much as possible. I did all this for me really! It's a bunting lovers dream!
What unique things do you feel the SE20 Craft Fair offers to visitors?
A really happy and positive atmosphere and a place to go to be surrounded by people who love their community and love what they're doing and who want to share that with people. To celebrate that, the theme of the next craft fair on April 4th is 'Love Local' and there will be a lot of Penge and Crystal Palace themed artwork and crafts on offer, all together in one room. So it really will be a celebration of SE20! Every craft fair has a theme so that each one is a little bit different, so when people come to it they can be part of something special and unique that won't be quite the same next time round. The first fair had the theme 'bunting' and there was so much of it that in the end I started getting people to take bunting home with them. Another theme was 'cake' and there was so much cake that day that I'm surprised people weren't waddling home! Another was 'yellow' and the hall looked like the sun had thrown up in it. It was brilliant.
I don't run the fairs to make a profit and I look for the same spirit in the crafters too. Community has to be more important than making money, although I realise that everyone needs to earn a little as craft supplies aren't cheap. Penge isn't the richest area in the world and also the state of the economy isn't great so noone has money coming out of their ears - to have a craft fair that's totally out of the price range of the community would be missing the point a bit. I'm always totally in awe of the wonderful, professional and extremely high quality products that the crafters sell at the fairs - you can visit the fair and buy things for yourself and your home that you would expect to buy in a shop - but you won't find it there because it's all handcrafted and unique and some of it is made especially for SE20 Craft Fair so you won't find it anywhere else.
Lastly, (as it's obviously the most important part of any craft fair) what is your favourite type of cake?
Chocolate fudge cake! There's been some amazing cakes made for SE20 Craft Fair over the years but chocolate will always be my absolute favourite! bring me a slice of chocolate cake at the fair and I'll be in my element!
To keep updated on future fairs and stall holder information, pop over to the official Facebook page here: facebook.com/Se20CraftFair
Or the official Twitter account here: twitter.com/SE20CraftFair
Thanks Christina for chatting with me and rekindling my love affair with all things local and crafty. The next SE20 Craft Fair is in less than three weeks! Please come down on Saurday 4th April, Kenilworth Hall, Penge (the church near Sainsbury's on the High Street) 10:30am - 4:30pm. Myself, Christina and a bunch of other hugely talented locals with their creations will be there. We'd absolutely love to see you.
I am always so excited to be a part of the SE20 Craft Fair not only as a stall holder but as a browser/buyer too. The community feel is one that is difficult to replicate but is always present here. The vendors are always of a high quality, unique, affordable and absolutely love what they do. The crafters of South East London are becoming a tight knit (hah! Hahaha! Knitting! Get it?! ...) community who love supporting eachother. It is so important to build and nurture these kinds of events within local towns such as Penge, so please come and join us on the 4th April to see for yourself.
*Disclaimer: There may be pale green knitted booties present but they will be AWESOME and totally touchable.
Who is Julie?
30 something, mother of two gorgeous boys, lover of one gorgeous husband, perpetually living in a dream world full of wine, chocolate and artsy crafty things.