Confessions of a Spoonie: Sheryl

Hello everyone, let’s jump straight into today’s post and read Sheryl’s confessions! I hope you all enjoy and make sure to follow her social media links!

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My name is Sheryl, and I live with a host of chronic illnesses. I have had a mini stroke at 14, multiple blood clots, a gore-tex band for a heart valve, seizures, scars all over my body from various surgeries and more. I would like to share my experiences with you, in hope that it raises awareness on silent disabilities, and to let others know that they’re not alone in this. 

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What condition/s do you suffer from and when were you diagnosed?

I have antiphospholipid syndrome (a blood clotting disorder), Lupus (SLE), Sjögren’s Syndrome, Epilepsy, a repaired heart valve, PSVT (a heart rhythm disorder), clinical depression and anxiety, and a couple other bits and pieces. I was first diagnosed at 14, after I suffered a mini stroke.

What are the main symptoms you suffer from?

My symptoms are a bit strange in the sense whereby they migrate around my body. They started out by destroying my red blood cells. After two years, they wandered off to attack my joints and muscles. Then they got bored and decided to go attack my brain. I can never tell where’s next, but currently it manifests in the form of inflammation in my joints and brain. We’re still trying to figure out if it’s hit the CNS, but that is the trickiest to decipher and is done through a process of elimination.

What 3 things have you learned about your condition since being diagnosed?

  • Just how deadly and painful blood clots can be, and not to wait too long before seeking help.
  • Muscle aches are the worst kind of flare-ups for me. They keep me up all night, screaming for help.
  • Steroids are my biggest lifesaver when I’m having a major flare, where painkillers don’t work at all. However, they also come with very extreme psychological and physical side effects, which can be worse than the pain itself.

In what way has the NHS supported or not supported you?

N/A as I’m from Singapore. Although, patients don’t get much support here at all either. We have this government-imposed fund which we’re supposed to contribute money to every month. But we’re only allowed to withdraw a small portion of it to pay for our medical bills. Chronic illness patients can now withdraw a bit more under a new health scheme. But believe it or not, Lupus and some of my other disorders are not classified as chronic illnesses! So I’m left with paying all outpatient medical bills and for medications in cash, which adds up to $1000 or so every month.

What is the hardest part about your illness, in your opinion?

The unpredictability. While nobody really knows what’s coming for them next, this is especially stark with chronic illness.

List 3 phrases you hate hearing off other people about your condition.

  • You should totally try out this vegan/super food/etc diet.” (From people who know nothing about me or my conditions.)
  • Think positive.”
  • Other people have it worse than you.

List 3 things you wish people would say/do instead.

  • I know nothing about your condition, but I was just wondering if you’ve heard of this…?”
  • I don’t claim to understand what it’s like, but I’m here for you.”
  • Say nothing, just be there.

Do you have any cheats/tricks to get you through the day or to help you complete certain tasks?

Not really. If I need to, I take painkillers or medications now instead of enduring with the pain. It’s never-ending, there’s really no point in bearing with it if you want any semblance of quality in your life.

Have you picked up any new hobbies or activities since being diagnosed that you didn’t think you would?

Never thought I’d be writing about health issues! I’ve dabbled with flower arrangement, which I’ve been interested in since young, but never got a chance to get around to. Learning French. I always wanted to learn more languages, but I sort of did this to try to commit myself to a schedule again without feeling panicky.

What do you do? Work, study?

Mostly unemployed. Sometimes freelance work as a front-end web developer. Although I’m trying to get writing jobs instead these days, but without much success so far.

What are you plans for the future?

I live day-to-day. I find it impossible to plan for the future with chronic illness. At most, I have a rough idea. I would like to try for kids someday, and build up a strong family unit. I want to earn some money and continue doing what inspires me to live – travelling and writing.

Is there anything you would do differently since being diagnosed, and why?

Treat my body with more respect by listening to it, and giving it what it needs. I was ignorant of just how hard it works to support me prior to being diagnosed.

Has your illness taught you anything about life?

It has shown me just how fragile we actually are as human beings.

What advice/information do you wish you were told when you were first diagnosed?

It’s okay to ask for help with anything you need (finance, work, doing the groceries, etc). Nobody can do it all alone, especially you.

What would be your main piece of advice for people who has just been diagnosed with your condition?

It’s okay to feel what you feel. Just hang in there. Everything will be okay.


What’s Next?

  • Continue to follow both mine and Amy’s blog over the next couple of weeks as we put up the last of our Confessions and Outside Looking In post from all of the wonderful participants! THURSDAY, SATURDAY and SUNDAY are the days these will be posted.

 

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Blog you later »

 

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