My school report (aged 6) read, ‘Deborah is a happy little girl with a lively mind’.
Not much has changed.
A happy little girl with a lively mind being trapped in a body with an auto-immune condition feels a little bit like being a wild bird in a very small cage. Fluttering every now and again, but consistently banging its head on the bars.
I’ve always thought of myself as a little bit awkward and graceless. I was always the kid with the socks round their ankles at the end of the school day, hair hanging out of plaits and the kid that people laughed at in drama that had no rhythm…but was having a good time anyway.
I finally found my rhythm creating beautiful plant-based food and I couldn’t deny my joy.
When I started to stumble around and drop things in the studio, I put it down to tiredness. In many ways that’s true. Auto immune conditions often result in fatigue. Not the kind of tiredness after a long day, but more like the kind of weary tiredness that you’ve run a marathon and your legs go wobbly.
I put the pins and needles down to a trapped nerve and a few careless falls.
I peel the sheets back and climb inside. Exhausted. It’s only 9pm. Repeat every evening for a year. Maybe I’m low in B12. I have tests. I am. I have 6, B12 injections and feel a little better.
Some people express surprise. “I thought by eating raw food, you’d never get sick?”
Not true. Following a raw plant-based lifestyle can help to give your more energy, make you look and feel better and reduce inflammation which is at the core of auto-immune conditions like multiple sclerosis. But the way auto-immune conditions often progress is that you receive a few major warnings before you reach the tipping point. Then you go over.
Stress is a major factor. I ignored mine.
I’ve had a few miserable shocks over the last few years and I realise that all the warning signs I’d received about my health, I’d managed to ignore and pass off as circumstance.
My house flooded three times in a year. I carried on and just worked around the cardboard boxes of chaos.
My father passed away. In the preceding week, I carried on, hoping he would make it until the end of the Raw Chef Training week I was committed to. (He did). I fell over a few times whilst carrying equipment.
I worked with a company who thought it was OK not to pay me for my work. I didn’t pursue it as I know enough from my previous job as an organisational consultant, that a company which has poor integrity will never succeed. I started to limp around like a wounded animal.
I make a cup of tea. I can’t carry it. I can’t drink it. It’s too hot and I can’t stand long enough for it to cool down.
I worked with another who turned out to be a raving lunatic and someone else who knocked on my door full of enthusiasm and promises who faded away quicker than the last 5% of battery life on my mobile phone – leaving me with a big contract to fulfil when I was at my weakest. Game, set and match.
I walk up the stairs, my legs give way beneath me. Two hours later the paramedics help me to my feet.
I had to admit that this one was going to be a longer haul.
Multiple sclerosis (MS) is a miserable condition that robs you of your ability to put one foot in front of the other. It robs you of the life that you thought you were going to have, and of the opportunities that you’ve worked hard for.
It contains your lively creative beautiful mind and imprisons it.
I turn 50. John carries me around for a couple of days to help me ‘celebrate’. I can sense his despair.
MS can take away joy. It can also take away your ability to do something as simple as make a cup of tea.
It can make you dependent, depressed, hopeless.
Pain becomes forefront of everything.
I spend a total of 6 hours 20 minutes in MRI tunnels or being wired up for tests.
It changes everything.
It makes you dig deep.
You can recover from the symptoms.
I am back in the studio. I am working.
I’m now stronger, happier and have more gratitude for those small moments that I used to take for granted.
Being able to drive myself somewhere and smell the hedgerows, fresh after the rain.
Feeling the sensation of different temperatures in my fingers.
Being able to drive to my studio, watch the sheep on the hill whilst I dream up new ideas.
Being able to make a cup of tea.
I am grateful for my friends. For all the articles I’ve been sent and expressions of support.
Thank you. You have my heart in your hands.
I shall leave with the words of C Joybell C. Not written as an analogy for multiple sclerosis but describes my experience perfectly.
“A star falls from the sky and into your hands. Then it seeps through your veins and swims inside your blood and becomes every part of you.
And then you have to put it back into the sky. And it’s the most painful thing you’ll ever have to do and that you’ve ever done.
But what’s yours is yours. Whether it’s up in the sky or here in your hands. And one day, it’ll fall from the sky and hit you in the head real hard and that time, you won’t have to put it back in the sky again.”
Thank you for bearing with me.