I'm so bendy it hurts, as does every single step

This year The Kiltwalk was delighted to welcome Children 1st on board as one of our Charity Partners for 2014. The decision to partner with Children 1ST was one of the easiest the board has had to ratify as their vision is for a happy, healthy, safe and secure childhood for every child and young person in Scotland.

Children 1st work with children, young people, their families, communities and other organisations to improve the lives of vulnerable children and young people in Scotland. Therefore I’m sure you can see where The Kiltwalk and Children 1st synergy comes from.

Today’s Blipfoto picture, taken at the end of the Glasgow to Loch Lomond Kiltwalk is a picture of a young girl who was one of many Kiltwalkers who walked every step of the 23 miles in aid of Children 1st. What makes this Kiltwalkers achievement all the more significant, is that she suffers from an inherited connective tissue disorder called Ehlers–Danlos syndrome (EDS).

EDS is a collagen disorder, which has different types. Hypermobility, the type Oor Kiltwalker has, causes nausea along with joint, tummy and nerve pain. It also makes the sufferer mega mega bendy, which is often thought of as a positive trait. However, when you are EDS bendy it brings a whole lot of pain.

You see the sufferer has no idea when they’re over stretching muscles leading to muscle pulls, muscle tears or damage to attaching tendons, ligaments or nerve endings, causing severe pain. Sometimes an EDS sufferer is aware that a joint is about to pop out of its socket, other times they simply pop all by themselves.

I was introduced to today’s Kiltwalker by Jodie Campbell, Regional Fundraiser for Children 1st, whom I had the good fortune of meeting at the Event. While we chatted, Jodie explained the challenges facing a Hypermobile (type) EDS sufferer on a day to day basis and the more she told me, the more I feared for our Kiltwalker.

Jodie explained that every day and for nearly every activity, someone with EDS has to plan how to use their joints sensibly, thinking at all times not to over stretch. They need to keep a little energy in reserve, always, to avoid over-exertion. They also need to prioritise daily tasks between must do and ones that can be postponed, while at the same time divide heavy and light tasks.

They need to organise their lifestyle and the things around them to cater for their condition. These range from sitting down to carry out as many tasks as you can to re-arranging your kitchen, office, living room etc. to keep frequently used objects nearby. The one lifestyle comment that made the risk of injury really hit home was to have “an easy hair style to manage", as washing, drying or styling can cause dislocation or over extension.

Therefore, if they were the simple things, what was the advice re exercise, not to mention Kiltwalking? Here’s what Jodie told me.

The advice is “Don't get involved in lengthy tasks that tax you beyond your means”. “Only start jobs with the understanding that you can stop it if necessary. “Take adequate rest”. “Don't overtire muscles and exercise different muscle groups” and “Avoid standing for long periods of time”.

Now I’m often in awe of the stories of our Kiltwalkers, many who go above and beyond to raise money for Children’s Charities by taking part in The Kiltwalk. However the thought of someone taking part in a 23 mile walk, with what I now know of EDS, left me literally speechless. Not something, I’m often known for.

As we chatted, I asked Jodie, who graduated in 2012 with a degree in Law and Politics, why she had opted for a career in fundraising and her answer was straightforward and to the point.

“There are two reasons. The first is I realised I have a talent for organising events and motivating people, showing them there is no such thing as impossible. The second, is that when it comes to fundraising, I am focused and determined when it comes to reaching any goal”.

Jodie's will to fund raise started at school, when at the age of 16 and after convincing her Head teacher that "putting on a High School Musical would be a great thing for the school and pupils", she was left with a problem to solve. That problem was one of no script, no cast, no music and no money!

Armed with nothing more than enthusiasm and drive, Jodie set about her task and before long word had got out. In no time at all the production now had 25 students with different skill levels and talents rehearsing for the opening night, which was only two weeks away.

The show was a runaway success, raising over £1,000. However, the legacy of the show was greater than simply the night itself.

It established a tradition and the annual production is still running in the school. The second legacy was that a certain ‘person’, had been well and truly bitten by the fundraising bug.

We also talked about Jodie's time at university where she had been active organising and volunteering in a variety of projects. One such project involved a position as Trustee Director at the Scottish Youth Parliament, a role that showcased the amazing things that young people can achieve.

We then talked about Children 1st and Jodie explained that Children 1st was a dream job for her when she left university. However, she was taken aback, no, make that astounded that in our beautiful, prosperous country one in ten children suffer from abuse or neglect.

It was those startling facts and figures that made Jodie realise she was in the right place and was ready to play a huge part in raising much needed funds to help provide vital services in Scotland, both locally and nationally all of which help to keep children happy, healthy, safe and secure.

For one so young her passion to help others is clear, as must have been the Kiltwalker with EDS taking part. At which she laughed and said “Yes, she is very passionate about walking for Children 1st, however only I know there’s an added benefit for her.

You see since she was diagnosed a few years ago, she’s been very sore, which she’ll tell you herself was the perfect excuse to get lazy and not take any form of exercise other than unwrapping sweetie wrappers, opening crisp packets and walking to the front door when the latest takeaway arrived.

Rather than dancing, which despite the pain she’d done regularly for a few hours every week, she was getting a belly and the beginning of a double chin and her bum, well that was beginning to get a distinct wobble as it hit the fridge door.

All of this was a huge driver for her, because if she didn’t get some level of fitness back, she would most likely lose the mobility she currently has.
However in order to make sure she did make those changes in her life and get fitter, she decided she needed a challenge, and that challenge became the 23mile Glasgow to Loch Lomond Kiltwalk, with her nominated charity being Children 1st.

It’s at this point I’ll come clean, as I’m sure you’ve guessed already. You see Jodie and the EDS Girl are one and the same and what a remarkable girl Jodie is.

I had swapped tweets with Jodie prior to The Kiltwalk, so I knew how painful her medical condition was and the enormity of the task she was taking on. If at this point, you as the reader can’t, please rewind to the bit about having a hairstyle that’s manageable, never mind the what not to do’s, all of which Jodie had just spent 9 hours doing.

Of course, Jodie was far too modest to tell me how painful the grueling 23 miles had been, she simply sat there smiling at her achievement and crying in pain, all at the same time.

I was speechless and felt completely helpless at the same time as all I could offer were words of comfort, recognition of her wonderful spirit, her determination and a hug.

It hadn’t been until May 2012, after a childhood of pain and unexplained happenings that it became clear there was an underlying root cause for Jodie's symptoms.

Sciatica, neuralgia, scoliosis, unexplained headaches, constant fatigue, joint pain, nerve pain hopeless immune system and period pain so strong as to make you physically sick were common place and Jodie began to fear people would think she was a hypochondriac, I mean how could one person have all these symptoms?

Her eventual diagnosis was a relief, as at least she could now begin to live her life accordingly to the rules of EDS, well, with the small exceptions of walking Kiltwalks it would seem.

Jodie has a hugely supportive family and has accessed many useful resources online to help her build up her strength and become more aware of damage she could be doing to her body long term. Jodie is in pain on a daily basis, however that doesn’t stop her socialising with friends or working full time.

Jodie was in such discomfort that I felt slightly embarrassed about asking for a photograph for our Blipfoto Journal. However the truth is I was in such awe, I just had to have a picture taken and it’s a great picture of Jodie. No really, she does have EDS and she had just walked 23 miles and the tears were only wiped away seconds before :-)

Jodie is currently doing what she loves and that’s fund raising for a wonderful charity. However, I’m sure that one day Jodie will use her talents and her University education and move into Politics, as personally speaking, I think the Scottish Parliament would be a greatly improved place with people like Jodie inside, fighting to solve poverty, inequality and cruelty, rather than fundraising outside it.

Jodie, you are a Kiltwalker now and you'll always be a Kiltwalker, so wear that badge of honour with pride. You deserve it.