Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'Mary's Story.'


Pink Flower

I’m Mary, a single woman who still lives with her parents. I was an ESL teacher for 6 years before I became a virtual assistant in 2015.

I was diagnosed with anxiety disorder in 2011 and grappled with it for about two months. It was short but it was so intense. I was barely functioning and felt that my world stopped.

On top of that, I get mysterious dizzy spells that has plagued me for 10 years. Some doctors diagnosed me with Benign Positional Paroxysmal Vertigo (BPPV) and others thought it was Meniere’s Disease. This is the kind of mystery that is no fun and exciting. It’s frustrating.

I’ve been working from home since 2015 as a virtual assistant for up to 5 hours day. Extending beyond that will bore me or cost me a lot of spoons. I’m also a chronic illness blogger where I share my health journey. Lastly, I’m a modern calligraphy artist. Just like my blog, my chronic illness inspired me to learn modern calligraphy. Writing affirmations and inspiring quotes in beautiful bouncy letters relaxes and soothes my soul and other women facing similar challenges.

Mary

How It All Started

With the anxiety disorder, the initial signs were subtle that I completely ignored them (palpitations for a few minutes, trembling, trouble sleeping, worrying a lot, etc.). But the thing that caused me to stop and really pay attention was when I stopped sleeping. In 48 hours of no sleep, I was a mess and had to seek a doctor. That was when I was diagnosed and given sleeping pills which did not help much because of my anxiety’s intensity. It was a horrible experience that I would not wish to my worst enemies.

The first dizzy spell happened in late 2007. I was in the bathroom and I suddenly felt and saw the floor tilt. It was slow at first then it became fast and strong that all I could do was scream. But before that, I would feel some unsteadiness with my feet when standing up for a long time or lose my balance when walking.

The Diagnoses and The Pursuit of Healing

I became more anxious when the doctor said I had anxiety disorder. But after a while, I was relieved as I had an answer already and I could take the next step.

The dizzy spells were tough to deal with as I’ve consulted a lot of doctors and they could not give me a straight and consistent answer. This makes it more frustrating. I mean, how can you accept something if you don’t know what it really is?

I scoured and turned the internet upside down in search for the one true answer. Some information confused me and made me more anxious but some has given me hope.

I used to take 1-2 tablets of Meclizine almost everyday when I was working full time as a teacher for my dizziness. I became dependent on it which was not good. When I started working from home, I quit cold turkey. Now, I would only take Meclizine when I travel for at least 2 hours (which I stopped doing temporarily since my worst flare in 2016). Vitamin B complex works well for me, too.

In 2017, I’ve found out that daily green smoothies, chiropractic sessions, massage, breathwork, grounding and sorting out my repressed emotions help me manage my flares significantly. I feel like my chronic symptoms are on remission now. I still keep on listening to my body and researching on my issues so I can have a thriving life.

Flares, Triggers and Limitations

When I had my anxiety flare, my whole body ached, pulsing and throbbing. It felt like I was hit by a car. My mind was also chaotic. It was in a very dark place and desperate to see a ray of light. I was also bloated and looked like 4-5 months pregnant. And sleep was elusive.

Intense anxiety lasted for about a couple of months in 2011. It was so bad that I stopped working. Good thing my family, boss and colleagues were very supportive.

The dizzy spells were debilitating. Sometimes they were mild, sometimes severe. They felt like earthquake in different intensities. I tried to describe these flares in this post on The Mighty. For about 7-8 years they happened almost everyday from mild to severe and lasted for about 10 seconds to a day. I would lose my balance and fall. I resigned from my job because I worked night shift that time. Then I found a job as a teacher. My colleagues would help me to the school clinic (I was carried to the clinic one time when I almost passed out) or give me some gentle massages on my shoulders, head and hands. It was embarrassing. :(

Over the years, I have identified some patterns and triggers. So I try my best to avoid them. The major ones are sudden movements, loud and sharp sounds, high temperature (I take extra care during summer), few hours of sleep, when I exert pressure (lifting, pushing), intense emotions, stress and a few days before my monthly period (hormonal, perhaps).

I have long accepted that I can no longer enjoy the rides in amusement parks. Concerts and big events with huge crowds a big no-no’s. Black Friday sale and mall-wide sales are crossed out as well. Good thing I’m an introvert so I did not miss these stuff much.

Elevators kill me so anything that has something to do with them are in my ‘can’t do’ list, too.

I cannot imagine myself working full time again in a company in which I need to commute every day. I also do not know if I will be able to ride an airplane, travel abroad and see the beauty of the world.

Mary

Letting Go of What I Loved

When I was at the pit of my anxiety disorder, I stopped working. I was a full time teacher and I just loved hanging out and teaching the kids. I think that was the most painful thing I had to let go (at least temporarily).

The dizzy spells are the ones that have changed my life choices, decisions and priorities significantly. For one thing, I don’t see them coming. No warning or signs at all. And they come as frequent and severe as they want. They kind of throw me all over the place (literally) whenever and wherever they want to. They don’t care about reputation, dignity and humiliation. So, I’ve stopped some volunteer work where we teach and feed over a hundred kids every week.

Although I enjoy my time alone at home because I’m an introvert, I’ve cancelled more plans, events, trips and get togethers than I wanted to. I had done live and face to face workshops, seminars and conferences where I learned and shared a lot.

I’m still hopeful that one day, I would be able to do these again even for just a few times in a year. But for the meantime, I’ll enjoy my baby steps to lasting recovery and healing.

There Is Still Beauty In Chronic Illness

Some of my relationships had gone sour and cold. I have also let go of friends who shamed and judged me and those who were indifferent of my conditions.

Mary Hiking

The flip side is I got closer to my family and best friends who have stood by me through this roller coaster ride.

Plus, chronic illness taught me 5 big things:

  1. I learned to be more grateful on things people usually take for granted (well, I was one of them). I’m grateful for a good night sleep, cool and breezy weather, vegetables, sunlight, water, ground, and most importantly, my colorful life.

  2. When I was a teacher for 6 years, I thought I was very patient and compassionate. But when I got the chance to know other spoonies, my heart expanded and swelled with more understanding and compassion.

  3. My body is full of wisdom if I just really tune in and listen to it. It communicates to me every single moment. And the most brilliant thing is it has the capacity to heal itself given the right support and environment.

  4. Stewardship. This body was entrusted to me and it’s my responsibility to take care of it. No return. No exchange. It’s a one time deal.

  5. My chronic illnesses taught me how to prioritize. Spoonies’ energy can fizzle in an instant. Flares come and go, in some cases, when you least expect it. So every single day, I make the decision on what matters to me and tackle them as best as I can.

I wouldn’t learn these 5 big lessons any other way. These lessons inspire me to press on, to get up when I’m down, and to live a more meaningful life for myself, for the people I care about and for other spoonies.

Psalm

Chronic illness also help me uncover and develop some talents and skills I did not know I had in me. In 2016, I learned modern calligraphy because I wanted to encourage myself through words that were written with grace, rhythm and beauty. Recently, I developed my writing skills that help me spread hope and inspiration and for me to just unload the pain.

What Now

First, I’d like to let you know that there is hope. A diagnosis or cure may be out of sight for now but hope is available. Dig deeper and find the root cause of your issues and start addressing them to stop or minimize the vicious cycle. If it’s because of resentment or unforgiveness, then face them and let go. If your illnesses are caused by food intolerances, then quit eating them. It can be years of trial and error but know that you are not alone and you have what it takes to achieve your deepest desires.

Your Turn

I dream for a more compassionate and open world. Everyone deserves a chance to be heard, to be known, to love, to live, to serve, and to be cared for. If I just start with myself, then I can help make this world a better place.

How about you? What is your hope for the future? How do your struggles and pains affect your life and dreams?

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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