Jo lives with her husband and cat in Kent, her passions are animals and music. She follows Krisha Consciousness. Jo reached out to me after seeing my hidden disability enquiry – how long have you got? She laughed. Fortunately, I had hours and over plates of vegetables on a balmy evening Jo shared her story.

Jo first had trouble with her joints aged eight, a Bakers cyst under her knee. Diagnosed with rheumatism aged ten, her knees were painful throughout childhood. Trapped in a cycle of pain, medication and steroid injections she “felt like a pin cushion.” She struggled to ride the horses she loved and hobbled into school.

Those around Jo wouldn’t know she was in pain; always cheery, funny, and compassionate, like many with hidden disabilities only those closest to her have known how hard things have been.

Later, Jo developed pains in her hands, she couldn’t hold a cup. Jo was diagnosed with Lupus. This doctor told Jo to stop riding horses and to swim. “Well, I had a horse… I don’t like swimming. I carried on riding when able against his advice. I found the more I slowly did, helped.”

Into her 30s feeling run-down, Jo developed brain fog, blotches on her legs, agonizing pain in her feet and pain everywhere; “my bones felt like they’d been hit by mallets.” She saw several doctors, one night shuffling into A&E in slippers. After doctors suggested comfy shoes; and asked, “what’s lupus?” Jo lost faith in healthcare. Eventually a doctor diagnosed Henoch–Schönlein purpura, an inflammation of the blood vessels. Antibiotics brought relief.

But, the rheumatoid pain remained, and now fluid on her elbow. Her new husband had to wash her hair and put her bras on. Jo still felt stuck in a loop of pointless and painful interventions. Following an MRI scan doctors recommended strong medication and an yttrium injection. Jo cancelled, feeling “there had be a better way…”

She ditched her hoard of medication and supplements, and influenced by research, spiritual exploration and vegetarianism decided to try a vegan diet. Meanwhile, upping her exercise gradually.

Three years on Jo now gets up before work at 5.30 to run three kilometers and does boot-camp or deadlifts weights in the evenings.

“Dairy was exacerbating my condition, I was pumping dairy for 30 years and my diet was poor. I LOVED CHEESE. I couldn’t walk past the fridge without nibbling, I was addicted. Milk is a growth hormone for a baby cow, it wasn’t doing me any good. Now I don’t eat oil and my diet is plant based. I get my protein from broccoli, pulses… food is a medicine. I used to slump with tiredness after work. Now I can ride horses again. I have just completed a 10K run. I no longer feel disabled…

In a recent blood test there was no trace, either I have cured myself or Lupus was an incorrect diagnosis. Changing my diet has worked for me. I’ll never go back. Of course what we put inside ourselves affects our health. Keeping active throughout has kept me positive, not being able to exercise made me depressed. Helping myself has improved my mindset. I am not a lost cause.”

Please note that this is Jo’s experience; if you’re considering making changes to your diet or medication please talk to a healthcare professional.

If you have experience of hidden disability or chronic illness and would like to share your story with Katherine please get in touch: Katherine@enhancetheUK.org

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Chronic pain. Lupus. Rheumatism. Henoch–Schönlein purpura. Vegan.

 

 

 

 

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