Updated: May 12
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‘A leisurely stroll is a gift’
By Sue Kidd
Sue Kidd is an EDS Spoonie who is currently walking 350km in 70 days for charity. You can follow her progress at @sueswalkingchallenge on instagram.
I’m not really sure what made me decide to do it but I wanted to set myself a challenge. I have decided to walk 350km in 70 days to raise money for Ehlers Danlos Support UK. As I write this I am in the final couple of days before I start my walking challenge. This challenge is a huge deal for me. A couple of years ago I was using a power wheelchair, couldn’t stand or walk for more than a minute without collapsing and was looking at getting my house adapted for wheelchair use. So, you may wonder how did I get to where I am now compared to a couple of years ago?
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. 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 diagnoses too, some that often go alongside: Postural Orthostatic Tachycardia Syndrome, mitral valve prolapse, Temporomandibular Joint Disorder, Mast Cell Activation Syndrome, Patent Foramen Ovale, Functional Neurological Disorder, Vestibular Migraine, PPPD, it was also discovered that I had had a silent stroke at some point too. EDS affects my digestion, swallowing, bladder, vision, balance, proprioception, circulation, bruising, brain fog and many other things too. I have constant 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.
My health deteriorated significantly after being diagnosed with EDS and continued to do so for a couple of years after doing a 3-week rehab programme at Royal National Orthopaedic Hospital. During this programme was the first time I had a drop attack/collapsed; my body was being pushed too far. These drop attacks continued and increased in time to about 8 times a day. My fatigue, pain, migraines, subluxations continued to get worse during this time too. I was stuck in a difficult place; if I sat still for too long as well as standing or walking this would also kick off symptoms and collapses. EDS UK helped me at this point by recommending who would be best to see. With the help of this doctor, I understood my collapsing was a functional symptom and was out of my control. I had good advice for trying to increase my strength and stamina.
I’m very grateful that I have the support of my local pain clinic. I had previously done a 6-week pain management programme (5 years ago) and it was such a help. With the support of physio and psychology I started the very long process of building my strength back up. I set such tiny goals, I never expected to get to where I am now. The first thing I worked on was sitting with a good posture. I eventually started to use foot pedals which after a few months changed to an exercise bike. Several more months later after my leg strength was starting to increase, I started to tackle standing and walking. All of these were such tiny amounts to start with (less than a minute) and were built up so gradually week by week.
When the point came to walk outside of the house it was terrifying (I was at a 4-minute walk) but it had to be done. After a while of doing this I worked with physio on how to reduce the use of my walking sticks whilst walking. I started doing half a walk with sticks and half without. The point eventually came when I wanted to stop using my sticks altogether. The first time I did this was with my physio and again it was terrifying. It ended in very happy tears at achieving this and I kept building and building on the length of time walking.
The point came when I was able to walk my dog for the very first time. I had tried to walk him using my wheelchair but I lacked the coordination and focus to manage this. My Dad walked my dog up until this point. This was a goal that I couldn’t have set at the start or even thought possible but as time went on it felt more achievable. I remember the conversation with physio about this and the comment of ‘what a Christmas present that would be!’. This was just before Christmas 2019 and it was one of my top goals. My dog is my life and I just love walking him. He is a 4-year-old Poochon called Buddy and has changed my life so much for the better.
The psychological support I received (and still do) from my pain clinic is essential. During the past 5 years I have learnt a lot about mindfulness, acceptance and gratitude that has helped me so much. I keep a gratitude journal and write down at least 3 things every day that I’m grateful for. This has changed my outlook, it’s important to remember the good in our lives. It is very easy to get lost in our problems and stuck in our own world. Working out my values, interests and what is important to me helps me to focus my energy on the right things. Acceptance doesn’t mean giving up, I wouldn’t have got where I am if that was the case. Having a gentle curiosity about my situation helped to gradually push me along to living the best life I can. It is possible to live well with chronic illness. For most people there can be tiny changes that can be made, be they physical or mental (like a gratitude diary or breathing exercise). In time these changes can add up and let’s face it, we’re playing the long game living with chronic illness – there is no quick fix.
I know that I still don’t have all the answers to what is going on in my body but in time I hope to learn more. I still have plenty of symptoms on a daily basis but the amount that I can do with them has increased. As far as the drop attacks go they have decreased dramatically so rather than happening 8 times a day it’s more like a once a month now.
I have chosen the distance for my challenge as it is pretty much 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 to give myself 70 days to do it 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.
I have decided to start this challenge on 24th 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.
I’ve never been one to open up about my experiences but I know if I had read something like this earlier in my life, I would have found it encouraging. Last summer I was asked by my pain clinic would I be willing to share my experience with others on the current pain management programme, as an ‘expert patient’. Now I’ve never been called an expert of anything, but I’ll take it! After doing this session, it being filmed and being uploaded to YouTube (Persistent pain and EDS – if you’re interested) I received such lovely feedback about how encouraging it was to listen to. This really helped me to get past some of my embarrassment and self-consciousness of putting myself and my story out there.
I’m starting to feel quite anxious and overwhelmed about how big this challenge actually is. I’m trying not look at the end goal and get too ahead of myself. I will try to take it day by day and try not to look more than a week ahead. I had a mini panic watching Ant and Dec’s Saturday Night Takeaway (bear with me!), when they said the series will be on for the next seven weeks. I got a bit concerned that this challenge would be 10 weeks long, so even longer than a TV series! Anyway, I’ve brought myself back from that. My initial thoughts and emotions when I came up with this challenge was excitement so I just need to remember that. It is achievable or I wouldn’t have set myself up to do it. The problem is that a life of chronic illness and unpredictability does provoke my anxiety, plans don’t always work out. I don’t always have a huge amount of confidence in my body but I’m working on this and have been for some time.
I wanted to do this challenge to raise awareness of EDS. Diagnosis can take so much longer than is necessary. Knowing what I am dealing with is so important. I have received bad advice along the way which made things worse, misunderstanding and injuries caused a level of deconditioning that shouldn’t have happened. I have had to relearn how to move my body. Even being diagnosed I have had to explain this condition to some doctors. I have had many awful doctors and had my pain and issues dismissed or implied I was making it up.
I also wanted to do a challenge that was positive. When I was first diagnosed, I was so overwhelmed. I thought life as I knew it was over and I would never be able to do anything again. I only seemed to come across stories or social media posts that were negative and I couldn’t find much positivity. I am realistic, life with EDS is incredibly challenging and it is important to know what you are dealing with. But there just wasn’t much hope. I’m a positive person, realistically positive. I know and accept that bad things happen but good things happen too.
Walking is my favourite thing, especially with my dog Buddy. I love the fresh air, freedom and it helps me mentally. I love to be out in nature and take in all the sights and sounds around me.
I have set up an Instagram account to track my progress @sueswalkingchallenge if you are interested.
I will be writing up my thoughts and experiences of how it went when the challenge is completed too.
The ability to walk should never be taken for granted.
“A leisurely stroll is a gift” (Saving Mr Banks).
Full post reading by Jenni Pettican