Things don’t always quite work out as planned. Can you believe that? Don’t know about wool over your eyes, I must have had a whole sheep.
The biggest part of (my) life is figuring that out and being ok with it. Despite (or in spite of having EDS) I am a pretty energetic soul. I spend this time volunteering and donating my experience and expertise to charities and social enterprises. Sharing the wealth is something I have always believed in – particularly as I was raised on a council estate by my single dad. As such, my grandparents wrapped a lot of love and time around us – they injected a huge dose of love into our community via running the Scout Group, (WORD) workshops and craft classes and acting as an extended family to many. Last year a road was named after my Grandad in our village. I’m pretty proud of that.
This investment in the people around me fuelled my spirit and helped me make a heap of friends – some of the kindest folks I’ve ever met. It also contributed to my burnout and I was in total denial. It was if I thought if I keep going things will be ok, I’ll be back to normal any time now. And they are (almost) and travel has played a huge part in that. Depression and anxiety creep up on you, like a fog; descending to rest comfortably on your shoulders.
Me: Oh hey
Fog: Imma sit her for a while, you ok with that?
Me: umm, sure.
*three years later*
Me: So, about this free ride..
I’ve travelled to some incredible places, like Vietnam, Cambodia, Australia, New Zealand, Copenhagen, Tonga and culinary roadie across Italy to name a few. However, my spiritual home is New Zealand and I am back here with an aim to heal and reconnect. In the fog of depression, it’s like you’re doing stuff you think is right, but on reflection, it’s not. Working through that is hard, but necessary.
I am a big fan of Matt Haig and his book Reasons to Stay Alive made a huge impact on my recovery. In the spirit of his amazing book, here is my fuel and love list:
I was diagnosed with Ehlers Danlos Syndrome when I was 11. It’s a genetic connective tissue that manifests itself in many different ways – making it pretty hard to diagnose. Depending on which type you’re diagnosed with (there are several different classifications) you might experience anything from joint dislocations, aortic dissection, Raynaud’s Phenomenon, valvular heart disease, atrophic scarring and the early onset of osteoarthritis. There is no cure for EDS and most people will receive specific treatment for their specific symptoms.
I have experienced a bunch of different bumps in the road with EDS and I count myself lucky that I have not had had a seriously life-threatening moment. With Classical EDS, my main issue is healing and recovery. Sprains and dislocations take ages; my skin tears like tissue paper and then when it finally heals it looks like I’ve scrunched that tissue paper up like rubbish. Annoying and slow, but not debilitating.
When I see campaigns that amplify ’love the skin you’re in’, I find myself thinking back to my teenage years, when I refused to wear anything but trousers and 100 denier tights, even in summer. The scars on my legs had left such a profound dent on my confidence, that I hated the way I looked often refused to have photos and do the things I loved – like performance art, netball, swimming and dance. God forbid anyone sees my hideous legs. I often wonder how social media would have impacted me back then. Would I have followed #EhlersDanlos on Insta and realised I am not alone and not weird and broken? Perhaps. One thing I know about the positive power of social media is the community. The love that can pour out of people feeling the same thing.
My main challenge is saying no. I love to travel and jump and climb but that’s a bit of a challenge when your skin splits open like a peach if you graze it. I have to reign it in most of the time and more often than not it pays to plan ahead and see how my EDS can be accommodated.
In 2018 I jumped on a plane to Tonga and spent a week on a wee island a short boat ride from the main island. This was my first solo trip so far away from home. It was also the first time I snorkelled and kayaked around a coral reef. Long may these ‘firsts’ continue. For me, this is huge progress in healing and recovering from almost two years of depression and anxiety.
Posted on: Apr 03, 2019