At the age of 31, 5 years ago, I was diagnosed with
hypermobile Ehlers Danlos Syndrome. I have had health problems all of my life to varying degrees and various misdiagnosis along the way.

https://www.ehlers-danlos.org/what-is-eds/

I have decided to walk 350km in 70 days to raise money for Ehlers Danlos Support UK. This is a charity close to my heart. I have received great support and advice from them and been pointed in the right direction to helpful doctors. Obviously in these current times charities are losing money. For smaller charities like EDS UK these really are tricky times. I originally set the target of raising £350, a pound for every kilometre, but as I have now gone past this, I've increased it to £700, £10 per day of the challenge. I completely understand if you aren’t able to donate money, maybe
you could share this instead. Either way thank you so much and thank you for reading this!

I have chosen this distance as it is the distance from where I live to the hospital where I was diagnosed (349km). There was no specialist care closer to where I live. I have decided on 70 days as this will make it roughly walking 5km a day. At this point in time, I walk everyday but not this distance every day. Some days I will try and walk a bit further to allow myself some days when I don’t have to walk as far and some days I will split it into 2 walks. Although I have set the target of 70 days, I will not be putting myself under pressure, living with chronic illness is unpredictable. I will do my very best and I’m determined to complete it. This is a big challenge for me, this would have been impossible several years ago.

I have decided to start this challenge on 24^th February as this is the (4 year) anniversary of when I completed the rehabilitation programme at the Royal National Orthopaedic Hospital. 70 days will get me to the start of May which is EDS awareness month. It is also a good time of year for me to do this, I would struggle to do this through the summer – I don’t handle the heat very well! I will go out whatever the weather, I actually love being out in the cold, wind and rain.

Raising awareness is so important to me, even being diagnosed I have had to explain this condition to some doctors. I have seen some awful doctors and had my pain and issues dismissed or inferred I was making it up. Life with an invisible condition is hard. The sooner the diagnosis, hopefully the less bad advice you will receive and less deterioration. There were signs all my life. From having problems learning to walk, ‘growing pains’, being ‘double jointed’, dental
overcrowding, fatigue, dizziness, vertigo, fainting, palpitations, nausea,
digestive problems, anxiety, headaches, endometriosis, several knee surgeries, chronic joint pain, migraine, asthma, depression, allergies.

Since being diagnosed with hEDS I have had other diagnosis, some that often go alongside hEDS: Postural Orthostatic Tachycardia Syndrome, mitral valve prolapse, Temporomandibular Joint Disorder, Mast Cell Activation Syndrome, Patent Foramen Ovale, Functional Neurological Disorder, Vestibular Migraine, it was also discovered that I had had a silent stroke at some point. EDS affects my digestion, swallowing, bladder, vision, balance, proprioception, circulation, bruising, brain fog and many other things too. I have chronic pain (joint, muscular, nerve, myofascial), subluxations in my hips, shoulders, knees, wrists, ankles, jaw, fingers and toes. I will have forgotten to add some things but it is safe to say that it affects pretty much everything.

Walking is my favourite thing, especially with my dog Buddy. I love the fresh air, freedom and it helps me mentally. A couple of years ago I was unable to walk or stand for more than a minute without collapsing. EDS UK pointed me in the right direction to get help with my collapsing and over the past couple of years, with huge support from my local pain clinic, I have managed to build on my physio, stamina, strength, exercise and resilience. It has been very slow and gradual. 

I have set up an Instagram account to track my progress @sueswalkingchallenge

https://www.instagram.com/sueswalkingchallenge/ 

The ability to walk should never be taken for granted "A leisurely stroll is a gift” (from the film Saving Mr Banks).