Katherine’s Wibbly Wobbly Walk (Guest Post)

From zero to completing a sponsored walk raising over £400 for hypermobility syndromes.

In 2011, after years of pain, exhaustion, worry and doctors’ visits, I was diagnosed with hypermobility syndrome, a hereditary connective tissue disorder. I experienced a bizarre mixture of contradictory emotions- relief, joy, excitement, shock, fear, hope…. my main hope was a referral to physiotherapy. I had three appointments, and the gist of it was: “You don’t need any help”. “Hypermobility can’t cause pain. Your pain is because you are so overweight and unfit. Lose weight and do some exercise”, I was told.

Over the coming weeks, I ran what I’d been told over and over in my mind. I remembered how I had been working out daily while I got steadily sicker. How severe the pain had been when I was well inside the “healthy” weight range for my height. How it was the pain, frequent injuries and bone deep exhaustion that caused me to reduce my activities.

I thought about how hard I’d worked to get to where I was then, from being barely able to walk in 2008 due to an ankle injury, followed by 2 years of painful foot problems. I knew what the physiotherapist was saying wasn’t true- hypermobility syndrome does cause pain- painful, weak joints is a primary symptom of the condition. I also knew that it wasn’t true that inactivity and weight gain were the cause of my situation. But the important question was- how could I fix this on my own? I wanted expert help to find a way to sneak up on my body and rebuild my fitness, without increasing the pain and fatigue to intolerable levels, and without keeping injuring myself and going back to where I started, something which had happened many times in the past.

So I educated myself. I joined the Hypermobility Syndromes Association and too part in their forum. I googled. I joined online support groups. I listened, I talked, I discussed, and I began my journey, with much trial and error and very, very slowly. I increased my walking, I saved up and found a secondhand elliptical and started doing 5 minutes at a time. I bought pilates DVDs.

By September 2014 I’d made progress. My joints were more stable and I had a little less pain and was a little less exhausted. That was when I came across the No Excuse Mom 12 week challenge. My tummy squiggled with butterflies as I wondered, could I really attempt 12 weeks of regular workouts? What was I thinking? My progress had ground to a halt and I knew I had to push harder. Maybe committing to the challenge, doing it alongside others, was what I needed. So I signed up.

The first few weeks were something of a nightmare as I struggled to keep up with my other commitments and manage to do regular cardio, pilates and strength training. Thankfully, I am a very stubborn person when I need to be! By the time I reached the end of the 12 weeks, it seemed a little easier, and I kept going, hanging on and hoping to see results.

Fast forward to 2017. An idea had been growing in my mind for some time, to do a sponsored walk to raise funds for the HMSA, to thank them for the work they do to support people with hypermobility syndromes and in raising awareness of these greatly under-diagnosed conditions. I decided that now was the time. I chose a route- a 9 mile circuit on local moorland, taking in steep and rugged up and downhills, slippery and boggy areas and rocky passes. I set up a sponsor page and before I knew it, the date of the walk arrived.

The weather was bright and breezy, perfect for hiking. I set off, with trepidation but determined to just keep walking no matter what, until I reached the end. I wasn’t prepared for all the emotions I experienced. There were times of intense boredom, periods of elation and feeling utterly victorious, interspersed with weariness and anxiety and then back to joy and a feeling of being completely at home out on the moorland. The last mile, down a steep rocky path, was almost intolerably painful and my muscles were too fatigued to properly support my knee joints. I had to resort to stepping very slowly and carefully sideways and sometimes sitting down and sliding on my bottom. But five hours after setting off, I arrived back at my starting point, I made it!

That day, I proved to those who have been critical of me that I can be strong and determined and overcome challenges to achieve my goals. But more than that, I proved that to myself. As is common for those with invisible illness, I’ve heard discouraging messages from those who don’t understand or accept the difficulties I face. I’d also listened to those kind of messages from within myself, partly due to difficulty accepting my condition- “Maybe I’m not really ill, maybe I’m just weak and lazy, if I just push harder I can lead a normal life” and so on.

I believe that it’s only when you’ve looked around and experienced it seeming like every door is closed and locked in your face, that you really know what that is like. I want my story to be encouraging, but you will never hear me say, “Anyone can do it” or “Nothing is impossible if you try hard enough” or “If I can, you can”. I know the reality of living with chronic illness or disability is that many things are out of reach, locked behind those closed doors. Part of living the healthiest possible life is acceptance of that reality. But I also believe that most of the time there is something we can do, some tiny change we can make, that can lead to more babysteps of progress, and one day we can find we have achieved something we thought we never would.

I can’t say where my journey will take me now. I am continuing to work hard at becoming as fit and helathy as I possibly can be, so that I can lead the most full and active possible life with my family. But maybe tomorrow will be the day I get another injury that severely limits my activities for weeks, months or even years. There are no guarantees when it comes to health and fitness, especially for those with bodies that are more vulnerable than others One of my dreams is to run a 10K, something I used to do with my beloved dad when I was a teenager, But at the moment, a short and very slow run results in several days of painful and scary instability of my knees, so I may need to find a more practically feasible goal!

Some links:
NHS page on hypermobility syndrome http://www.nhs.uk/Conditions/Joint-hypermobility/Pages/Introduction.aspx

Hypermobility Syndromes Association http://hypermobility.org/

My Virgin Giving page http://uk.virginmoneygiving.com/KatherineBaldwin

Wandererssong is Katherine, is a fitness freak who is fat, forty-something and a mum of four. Some of her other passions are- books, crime dramas, druidry, horse racing, biomedical science, Orphan Black, her schnauzer, campaigning for social justice, and all the music.