Hi, I'm Annie,

Hi, I'm Annie!
I'm a bit of a hippy, a wife, a midwife and I love to make things...all kinds of things! I have no writing experience (except essay writing at uni) and I don't know my nouns from my pronouns. Nonetheless I want to share my experiences of living with Ehlers-Danlos syndrome (hypermobile type). I'm not an expert, but I want to share what I've learned; and learn about what other people find works. But most of all I want to be positive and to laugh at myself in all my weird bendy glory!

you can check out my website at www.anniemadeit.com
or keep in touch www.facebook.com/anniemadeit
instagram @anniemadeituk and @collagenisforwimps

Thursday, 3 November 2016

My mate Sid; my walking stick and my Ehlers-Danlos syndrome


Sid the stick, he's my buddy old pal!


I got Sid after I first met my occupational therapist. I had never really been clear about what occupational therapists actually do, but when I had one visit me at home I realised they probably have one of the best Jobs. She explained to me that her job was to help me do the things I HAVE to do more easily so I have more energy left over to do the things I WANT to do...OMG...there is someone out there whose job it is to make sure people like me have a quality of life, not just that we can get dressed and have eaten.

Wow! Up until this point I had just been struggling on and not using a stick. My POTS symptoms and joint pain were making it very hard to get out and about. I was always looking out for the next opportunity to sit down every time we went anywhere. If there was no place to sit, I just wouldn't go. Which in hindsight, was clearly, a recipe for misery. My OT basically told me to stop being a stubborn Twat, suck it up and use the damn stick (I'm paraphrasing- she was definitely much more professional!)... once again she was right.

I remember musing aloud “I want a stick that I can fold up and put in my bag, but also has a little seat on the top. Wouldn't it be great if some genius has invented that”
by jove, they have....enter Sid the stick!




After weeks of trolling the internet I eventually found the Flipstick website. Dudes....seriously. I am not on a commission, I swear. But this has to be some of the best money I have ever spent! get yours here

Sid folds up into my bag. Which is amazing, because if get him out my bag in just the right way, Sid unfolds as I pull him out my bag and I can do a very respectable Mary Poppins magic bag impression! Flipstick also comes with a handy travel bag if you would prefer, I don't bother with mine though.



I'd like to use this junction to say, Yes, I've named my stick because I love him so much! No, I don't think its a real person. I joked about my mate Sid once in a session with a pain psychologist, this was a mistake. This is how I learned that mental health professionals lack a sense of humor, they take everything you say as gospel (in case you are suffering from delusions I guess). The more I tried to reassure her that I didn't believe my walking stick is a person called Sid, the more convinced she was that I in fact did. I gave up. She won that battle.

The top of Sid the flipstick folds down to become a little seat which I can perch on if I'm waiting in queues. I can become a little human tripod. Now Sid is black and white (they come in a lot of other colours), the brilliant thing about this is that in semi darkness you can't see the actual stick. So when I'm sitting on it, I look as though I'm doing some kind of insane floating squat! I get all kinds of double takes and then people laughing as they realise what I'm doing.


Our relationship has not been all sunshine and roses. For one thing Sid and the beach do not mix! Last year on holiday, my husband and I ventured to the beach, I settled on my lounger and folded up my lanky friend and chillaxed to the max. When the time came to head back to the hotel I found, to my horror, that sand had found its way into the folding mechanism on the top and I couldn't put the seat back up into handle mode. Needless to say meltdown ensued! But...thankfully my lovely husband saved the day and managed to get the sand out! Phew. No lasting damage.

But it gets worse...recently I had a little incident at a wedding. I wasn't even drunk, I swear! I was perching on the dance floor, doing my own version of rocking out (tentatively wobbling in a circle). When I managed fall off Sid, straight down onto my ass! The worst of it is that, because I was sitting on Sid, I landed on the hard plastic seat...lets just say me and Sid got a little too close for comfort and resulting bruise to my pride was as spectacular as the bruise on my ass! And who knows how many people saw my pants in the process.

Thankfully my buddies helped me up and I noticed that I had put my stick on a stray hair clip which caused my stick to slip out from underneath me. I cursed the day the bobby pin was been invented then sulked on a chair for the rest of the night! I felt so sorry for myself that I allowed myself a cheat on my diet and ate some chocolate cake, I decided I deserved it.

Generally though Sid and I get about well. I've been to gigs, albeit, with a human shield of my husband and sister in law either side of me to stop unsuspecting drunkards moshing me off my perch. We've been to the harry potter studio tour, where I considered getting on the green screen and pretending to ride Sid like a broom stick, but the queue was long and after a while sitting on Sid my coccyx starts to move. here me ans Sid rocking out at a fancy dress party last year..



To some people it seemed like a sign of me giving up, like I wasn't prepared to fight any more. But to me it was a way of adapting to my condition's limitations and allowing me to be able to do more of the things I want to do. I saw it as a means of finding balance and pacing myself. Just like my OT said, use less energy doing things I HAVE to do. Give myself more opportunity for fun.

I think understanding and acceptance towards people with disabilities and illnesses has undoubtedly improved, those of us with an invisible illness/ disability will know that there is still a way to go. There are still a lot of people who cant compute that a condition exists if you cant see it. Its not the way It SHOULD be, but at the moment it is the way of the world.

People who know me are fully aware of my condition and don't need me to use a stick to see and know how I struggle. I am able to explain to them what I need. But I found that as soon as I started using Sid, the general public had a visual queue to realise I was struggling. I found that more people begun to make allowances for my condition, They started opening doors for me, giving up seats on trains and in pubs. Suddenly no-one got impatient with my slow walking or when I had to stop and rest.  I  shouldn't have to carry a walking aid to alert other people of my situation, but I guess how else are people supposed to know that I need that seat?

I guess what i'm trying to say is, if you've been undecided if a walking stick might help you, it probably will. in more ways than you can imagine

Annie x





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