What chronic conditions do you live with?
Antiphospholipid Syndrome, Lupus (SLE), Epilepsy, Sjögren’s Syndrome, Clinical Depression & Anxiety, PSVT (Heart Rhythm Disorder), a Fixed Mitral Valve
What’s is the most common misunderstanding about you or your condition?
That going vegan or a certain diet will help me, but it’s a really tricky thing with Antiphospholipid Syndrome plus other conditions.
What’s one thing you wish you knew when you got diagnosed?
Always believe in your pain and seek help for it. Don’t wait too long as the impact can be lifelong.
What’s the most ridiculous thing a doctor has ever said to you?
‘Is that all it takes for you to cry?’ (On finding out about my APS diagnosis. And a few other diagnoses.)
What gives you inspiration?
Watching strong women in movies or TV series. Books and certain quotes.
Tell us a story about when nothing went to plan…but the story is one good one to tell!
When I was younger I held a birthday party and though I was in pain at work at 7pm I ignored it and pushed through. I ended up flaring so badly I could hardly walk and had to leave my own birthday party. It was Friday night so it was really hard to get a cab, and in those days there were no car services like Uber or Lyft except Uber black. I had to call an expensive Uber black to get home. Spent the rest of the night crying in pain; can’t remember if I had to go to the hospital.
To what do you attribute your ” daily will?”
I don’t really believe in ‘willpower’ anymore (quite a few studies on this, too!). My personal motto is a quote from Viktor Frankl, ‘it is not what we expect out of life, but what life demands from us’. Life always demands the best out of us.
What alternative treatments or therapies have most helped you? Any that surprised you by how effective they were?
- Lymphatic drainage therapy – I leave feeling energized.
- Flotation therapy – best sleep I’ve had in years, though it wasn’t that beneficial for bodily aches.
- Ayurvedic therapy – I followed a regime for a while and whilst slow going, seems to work in terms of heartiness.
What was most challenging when you were first diagnosed?
Side effects from steroids – the moon face and bloating was not good for my self-esteem especially in my teen years. Also the mental side effects are vastly underrated. I should have sought psychological and psychiatric help much earlier.
What does your daily routine look like?
Wake up when my body wakes me (if I don’t have appointments). I realize setting an alarm always leaves me tired and achy the rest of the day. Takes me about 2 hours after to ‘wake up’ properly after my morning meds and coffees. Surf the net and prep for the day. Work. I’m ‘alive’ at around 4pm, and do more physical tasks around then. Have my evening shower and dinner with a TV series. Rest of the evening spent on FB groups, social media, chatting, etc.
How has “being disabled” changed you as a person for the better?
You’re forced to learn many life lessons at a younger age, so you’re a bit wiser.
What is the one thing you are MOST proud of yourself for achieving despite your condition?
Having travelled to remote places in the world almost independently despite the dangers of flaring or getting major health problems over there. E.g. in the middle of the Mongolian plains.
What are your favorite life hacks for getting things accomplished day to day… while overcoming the fatigue, brain fog and all the symptoms?
No use pushing through when you just can’t. Rest, rest, rest. And when that one day comes when you can, you’ll be surprised at how productive you can be then!
Do you have a slogan that you want to leave readers with?
Same quote! Asking life ‘what is it you demand out of me?’, instead of setting expectations from it.