Health During the Movement Control Order (MCO)

It's been a year since I have posted an update about how life has been.

The year 2020 has been quite a rollercoaster ride. We started the year realizing a virus was spreading, infecting many people in many countries, turning it from an epidemic to a worldwide pandemic. To try to flatten the infection curve, Malaysia has been on a national lockdown since March.

How is it like to have Moyamoya disease and keep safe from this virus, which is now known as Covid-19?
For one thing, I have been avoiding hospitals as they are hotspots for infection due to the very nature of hospitals - sick people go there. People who suspect they are ill with the virus will go to the hospital for testing. And it has been discovered that people who have existing conditions are more susceptible to it, and death rates are higher for people with existing illnesses.

There has been a heatwave as well, and I don't do well with heat - it triggers my migraines. Thankfully with the lockdown, staying home is enforced. And it gives me opportunities to sleep my migraines off. With it being a lockdown, I am also the caregiver of the family and am the only one who can go out to buy provisions/groceries. And wearing a mask when I go out constricts my airflow. Also, I sweat buckets due to the heat, and my face being closed up, and I get dehydrated. There have been international reports of people exerting themselves while wearing a mask, and they drop dead due to lack of oxygen.

I realize there has been many news that can be rather scary for someone having a medical condition like Moyamoya. But I have been able to regulate my emotions knowing that I just need to be careful and stay safe, and not take these news too personally. I ensure I have a bottle of water if I need to go out so I can replenish the water in my system, keeping hydrated.

This is definitely a very novel experience - going through a pandemic. I hope that this only happens once in my lifetime. I pray for safety for everyone, especially those who are already vulnerable physically.

no time to be sick

I've been under a lot of stress for the past month or so. feeling like a mobilizer in many aspects of my life. The strain is starting to seep into me and affecting my head and body. My severe migraines have been returning, my aches and pains are back, and my chest pains have been more excruciating.

I need to slow down, but i'm just swamped with responsibilities. I really need to learn to say no. Already i've been saying no, but somehow I still end up with many things that occupy my time. 

Things have not been easy at home. But sometimes I feel I can't allow myself to rest or to just ignore the problems... it's like i have to put aside the fact that my body is screaming for restoration.. because i have to look into resolving family issues.

i'm tired

living life while anticipating death

In just a blink of an eye, we are now in the month of April 2019. I've noticed my thoughts of death and dying since last year. I really don't know how much time is allotted me and I realize that's not up to me to decide or plan.

However, I discovered a lesson in rather paradox perspective. As I anticipate death, I acknowledge that time is limited. I do feel a sense of urgency. Sometimes I wonder if this sense of urgency may be causing more stress than I need. How shall I balance motivation, drive and anxiety?

Due to my sense of limited time, I want to live a fruitful life. I life that I won't regret. Do I want to leave a legacy? Do I want to impact lives? And I do want to have deep, meaningful conversations and relationships.

Sometimes, I feel like I want to live my life as if today was my last, and that I will die tomorrow. Do I dare to live that life I want? My tomorrows may or may not be limited. Are there things that are holding me back? I realize i'm more adventurous now due to this mindset of wanting to live life to the full.

What are my values that I want to live by?

When grieving will continue

This post is late, but in August I was diagnosed with Hyperthyroidism (it runs in my family). Although my family and I had suspected it before the blood test, receiving the formal diagnosis was hard for me. It was yet another health issue that I had to deal with. Again, this identity as a sick person kept coming to me. Grief came over me. My family didn't understand why I was upset but I allowed myself to cry.

And to fast forward to recent days, I was informed by the neurosurgeon that my Moyamoya vessels are still evident in my MRA which suggests that I am still not safe from suffering any stroke attacks. Also, he mentioned that I have to give up my dreams of learning scuba diving, bungee jumping and sky-diving. I know that my condition has no cure and it is progressive but it was another painful period of grief. 

After the hospital appointment, I just sat in my car and cried. In my head, I thought of just going home and crawling into bed, not wanting to do anything. But I had a muaythai trial class that day.. after some reflection, I felt that life still goes on and I can try to live it meaningfully while being careful not to strain myself.

What came to me was that my grieving process will come up time and again as my disease progresses. And I will continue to experience losses and I will grieve. I am ready for that? maybe not, but I have learnt not to dwell on it. Do I wish things were different - that I was fit and healthy. Sure I do, but again wanting to live life now the best I can and be the person I want to be. I feel I am more authentic and real now, without hiding my emotions and pretending that things are great when they aren't. But being able to accept my struggles and continue doing things that are important to me. 

Looking at Healing

Recently I met a wise lady who got to know about my health condition and she asked if she could pray for me. In her prayer, she prayed for healing for me... and for some reason, I felt compelled to tell her that I have stopped praying for physical healing as I believe there is a reason for this disease and how I can serve God even when I struggle with this illness.

Needless to say, her response shook my heart as she said she understood that I have come to terms with the disease, that it is here to stay. But "healing comes in many forms". She was also praying for my spiritual healing, my emotional healing, my psychological healing. It struck me that I have been thinking of healing in such a limited way...

As I look back at my journey, my struggle and my pain with this disease, I see how God has brought me through it all. Definitely, I still hurt. It's still a challenge, but my focus has changed to looking to God for strength instead of stubbornly depending on myself.

Truly, if not for this disease, I would not have been humbled and broken. Desperately needing God and His comfort and grace. It's through this illness that I am able to see God's Love and providence.

Thank You, Lord for the healing that you have granted me, even when I didn't realize it. And thank You for revealing this to me.

Defining strength and courage

When I was younger, I always pictured a person with courage and strength as a person who was physically strong who was victorious always without any weaknesses or limitations. So with that image in mind, I pushed myself to be that picture of strength and courage. To always be fine, never faltering when trials came.

Well, what broke me was when I could not push myself anymore to do that. To hide my flaws or keep a smile plastered on my face. My disease was really hurting me and bringing to light my limitations. I had to face my flaws upfront. And it was one of the most difficult things I ever had to do.

But as I journey on... I began to learn that I will never be perfect. I am just kidding myself. Only when I was honest with myself, that I was able to manage my depression and my expectation of myself. And now, as I reflect... courage is facing my flaws without avoiding it. And strength is accepting my limitations, and working with it without giving up. 

I still am tempted to push myself too hard. Sometimes I do have the urge to prove my worth. But then I am reminded that it's OK to be me. I want to love myself now. Old Self was nice... but New Me is developing leaps and bounds. I feel New Me is learning to explore parts of Old Self that Old Self would never have wanted to look into because Old Self was comfortable.  

So I feel New Me has discovered new characteristics which has made her stronger and more courageous. By being vulnerable and honest with herself. Thank you, New Me. Thank you for not giving up. 

life-giving moments

"Remember to initiate life-giving moments..."

These wise words are spoken by a person I have so much respect for. I am so thankful for the opportunity to be given space to be myself - to grieve a recent development of my Moyamoya disease, to be deeply connected with friends and people that I just got to know in the past 6 days.

Life-giving moments.

I wonder how that looks like. Sometimes it feels ironic to think about life-giving moments when I am reminded daily about my incurable disease - my scars, my bruises, my symptoms, my pain... But as I continue to reflect why I am still given the chance to live, I realize how I can touch others just by being real with my struggle. I was very blessed to have people affirm me the past 5 days. It has been unreal as I never really thought of how my actions may affect people. If you asked me 5 years ago if I would be so honest with my limits and weakness, I would have laughed at you. But I see how God has been by my side and given me the strength to hang in there.

To be honest, I still struggle at times. And I am still considering what options I should take if things go south. Do I continue to undergo surgeries? I spoke to this wise friend, telling her that I lose a part of myself every time I underwent my brain surgeries. Am I ready to continue losing parts of myself, my functioning? What is God's Will for me? How do I continue to glorify Him in all my experiences? Would it be selfish to decide to stop treatments, to let my life take its course and to go Home when it is time? I am ready to go Home, but I am mindful not to wish myself death as there is much that I can do while I am here.

Still... this song comes to mind - My Heart is Filled with Thankfulness. I am thankful for the friends who have been supportive. I am thankful for the safe space to be real. I am thankful for the God who loves me unconditionally and is preparing a place for me in His Kingdom. I am thankful for God granting me opportunities to share His Love.

My Heart Is Filled With Thankfulness

“My heart is filled with thankfulness

To Him who bore my pain;

Who plumbed the depths of my disgrace

And gave me life again;

Who crushed my curse of sinfulness

And clothed me in His light

And wrote His law of righteousness

With pow’r upon my heart.

My heart is filled with thankfulness

To Him who walks beside;

Who floods my weaknesses with strength

And causes fears to fly;

Whose ev’ry promise is enough

For ev’ry step I take,

Sustaining me with arms of love

And crowning me with grace.

My heart is filled with thankfulness

To him who reigns above,

Whose wisdom is my perfect peace,

Whose ev’ry thought is love.

For ev’ry day I have on earth

Is given by the King;

So I will give my life, my all,

To love and follow him.”