From Fear to Fullness of Life

Teal is the color representing Myasthenia Gravis

June is the month dedicated to the awareness of Myasthenia Gravis (MG) and it has become really close to my heart being on my journey of healing from Myasthenia Gravis. Yes I know the general consensus said that the condition has no cure but I choose to trust in my body’s ability to heal. MG thrivers are sometimes called snowflake warriors for the fact that every case is unique. That pose a challenge of its own as there is no certainty or a good pattern as reference. I have taken the path of looking at my unique condition as an opportunity to experience fullness of life in ways I would not have explored otherwise.

When I was given the diagnosis in Feb 2020, my world was an utter chaos. There were so many things that I needed to consider and to take care of, all at the same time giving myself the best chance to beat this. Not only my world was chaotic, the world around me turned into a real chaos with the lockdown and restrictions started to affect our lives shortly after I was discharged from the hospital. The looming fear at that point of time was intense and I can feel it in the atmosphere. If anything you need to know about autoimmunity, extreme stress is very bad for any autoimmune condition. Mine was triggered by a prolonged period of unmanaged stress plus sudden change of environment. It is also known that people who are immunosuppressed like myself are categorized as being high risk of viral infection. So it was natural of me of being fearful.

I was just beginning to navigate life with a chronic condition and then this virus chaos came about. Fear was all over the place and I was not spared from it. Fear causes stress that worsen my condition and it’s very easy to see how bad it affect me. So I made a conscious decision since being out of the hospital to manage my stress well. This fear business took a toll on me as almost everyone around me were fear filled about the virus. I reached the tipping point real quickly and decided that fear is no way of living. It was sucking life out of me and I did not like it. In my desperation for life literally, I called upon the name of Jesus and asked Him; what should I do? How do I live?

Let your faith be bigger than your fear!”

That was all I heard and that was enough to propel me forward. The first strategy of winning a battle is to know the enemy and that’s where I started – naming my fear. It was not hard to name them as the first and biggest one that came out was the fear of death. I feared death after escaping death not too long ago. I feared that an infection may kill me because at that point of time I was swallowing 20 tablets daily; a majority of which were immunosuppressive drugs. That would made me really vulnerable. Nailing this fear to the cross and charging forward in life with faith was my experience of saving grace. I have confidence and courage that I will live and thrive. Proper precaution taken, the rest is trust and choosing to live in joy. After all, my health is my responsibility, I personally think it is unfair to put my health risk as a burden for the rest of the society. Praise be to God for His protection; all through this year of healing I have regained strength and is rarely sick.

Putting fear in perspective is an important element in moving forward. The way to do that is to seek the truth about the specific situation. We know that the truth will set us free although it is likely to be uncomfortable. Let’s look at some comparison: if you catch a cold, you know that the chance of you recovering and healing is more than 99%. With that knowledge, fear is by logic small in comparison. The inconvenience of being unable to function optimally for a few days that may bother you more than the fear of death. In my situation with MG, nothing was certain. When I was administered with the rescue medication, there was no guarantee that it will work on me, we hope I respond which I did (with no side effects). Same with the maintenance medication, we can only hope I respond, which I also did until we adjusted the dose. When I asked if a remission is possible, the answer I got was “I can’t tell you for sure because MG is so variable. Some patients get into remission and it came back again, some get into permanent remission and some never get into remission”.

With such variability and uncertainty, it was very easy to despair and let fear grip over my life. But I knew this very clearly, fear perpetuate stress and stress worsen the symptoms. Given the situation, although saddened, I made the choice to live in hope. If some people get into a permanent remission, I shall be one of them. The choice I made to live in the fullness of hope and life carved my way forward. I took actions that would give me the best chance to get to the remission. A massive change in lifestyle was required – diet, habits, routine etc. It was a sharp learning curve to be in tuned with my body again. I realized how brainwashed I was! And that was uncomfortable! One great thing coming out of this healing journey is the deepening of my empathy towards myself as well as to others especially those who could not see a way forward in a fear saturated world.

Being able to face my fears with the truth and knowledge in hand and then move forward in faith has been a great blessing. I live in freedom precisely because I never allow the disease to define who I am. I admit it is not the easiest of journey and fear does creep in from time to time. I allow my self to process the fear and then to formulate the way forward with my Saviour. All this is possible thanks to my years as a coach and also those years in ministering to people as well as support from my inner circle.

Fear is a constant companion whether we like it or not. Some are necessary like in the case of meeting a tiger, you better let your fear propel you run for your life. I would say most fear we face today are opportunities if we allow them to. Dear friends, if you are having difficulty in navigating fear and are feeling stuck, do feel free to reach out to me. I run my own coaching practice and I can also recommend other coaches or counsellors to you. Know that it is my prayer for you to be well. Fear does not have the final say and it is possible to live victoriously. May you be blessed!

With lots of love,
Irene

Navigating Motherhood through a Chronic Disease

My world was in a daze back in February when I fell flat on my face on the road before being diagnosed with Myasthenia Gravis (MG): an autoimmune disorder that attacks the neuromuscular juncture causing muscle weakness; including voluntary muscles used for breathing. The first thing I was asked from every person I talked to was: “Were you carrying your baby when you fell?”. Thank God I was not carrying my baby. It all started a little less than a month prior to that fateful mid February day, when I noticed difficulty in chewing my food. I thought it was the effect of me feasting away during Chinese New Year.

The symptoms got worse that I started making my food softer and did some research on what could be happening to me. MG came out as the top possibility. Reading more about it made me dread it and kept hoping that it’s not MG. My GP was hoping of the same but somehow my symptoms worsen to the extent that I could not lift myself up from sleeping position, chewing became increasingly difficult that often followed by slurry speech, lifting my arms for short while took a toll on me, smiling was a task and I was constantly exhausted.

Upon arrival at the hospital, the neurologist ordered a brain MRI scan to rule out stroke. MG was given as a preliminary diagnosis that was to be confirmed the following Monday (I went in on a Saturday), when the nerve testing centre is in operation. We decided to go home for the night and planned to be seen as outpatient on Monday. However, I started having difficulty in breathing. It was a scary evening, the what ifs were all over the place.

Sharing with community of friends who prayed for me certainly helped me through that evening. I received the grace to accept the diagnosis and to enter into treatment regime. Upon seeing me as inpatient, my neurologist quickly ordered the necessary tests to be done and had me started on IV immunoglobulin (IVIG) rescue therapy while also start me on my longer term treatment. I was blessed to have tolerated the treatment well. After the first dose of IVIg, I could tie my hair and that felt so good. A Chest CT scan also revealed the existence of a thymoma which means surgery is needed to remove it but that can only be done once I am stable enough.

My biggest worry was my daughter. How am I going to mother? How am I going to provide for her anymore? I enjoyed our breastfeeding journey and does that mean I need to stop altogether? God was so gracious to speak to me at that time by inspiring me to seek breastmilk donation. I am grateful we have a very good network of breastfeeding advocates. Through the group and through friends who helped out, I managed to source out enough donated breastmilk that nourished my baby. Till today she is still enjoying the benefit of human breastmilk thanks to the generous giving of our local Mama Tribe. My own breastmilk supply has suffered a great decline due to the treatment. Even if it is limited, I am still grateful my child still get something from Mama.

We recognized that strength is the major challenge for MG patient, hence we were quick to get practical help. My mother arrived the day I was admitted to the hospital which was such great help for us. She helped me with the baby and daily household stuffs when my symptoms was at the worst. We also arranged for cleaning company to clean the house. My mother’s stay for almost a month helped me to balance a new lifestyle. I was able to get the rest I needed and to get around organizing stuffs that would aid daily living.

At the peak of the treatment to suppress the autoantibodies and to replenish my strength, I was swallowing 20 tablets daily with the help of 5 alarms to remind me of the timing. On top of that, I also started taking specific health supplement tablets to aid with my body function as well as to counter side effects of treatment. The first month since the diagnosis was really blurry. I could only hold enough strength to play with my daughter. I was afraid to carry her in case my strength fail and she slipped off my arms. My emotion was all over the place partly due to the side effects of the medication. Normalcy were hard to imagine.

Source from this link

Days passed and then months, I started to feel much better. Looking back at the timing, I can testify to the goodness and mercy of God. After my mum left, I got help from my niece and sister for a short while. I’ve also got a friend to help out with cooking on some days. At that point I started to take back the cooking role at home. God in His mercy showed me His unique way of empowering me forward.

Due to the lockdown, we were short of an extra pair of hands after my sister went back to her home and also was locked away from hiring help for cleaning. By that point, my symptoms has started to stabilize to the point that I was confident to carry my baby with the help of a carrier. But I still occasionally feel overwhelmed and limited. So I asked God what was the best view to see my situation? God was quick to answer: “think possible and do what’s possible!”

It was a great place to begin. What’s possible were different on day to day basis. Some days possibility looked like a clean house and warm meals, some days it’s the grace to be grateful that the day went well with little done in the house. There were times possibility meant just being able to pray and connect to my Source through the demands of motherhood. The invitation was to enter to a place of trust and rest; and I happily accepted that invitation.

One of the first breakthrough was me driving alone to pick up my baby’s breastmilk donation. Heaps of preparation ahead of time and I was so pleased that I made it. Driving can be difficult as the bright sun tends to tire me and often resulted in ptosis (droopy eyelid). That fateful morning was bright as and I responded with praise because if God allowed it, then He must be planning to show me His glory.

Thinking possible and doing what’s possible has also helped me to recognized my own preference. I realized piles of chores can overwhelm me, so I start to manage household chores in bite size. Meals became simpler and priority to spend time as a family became our top agenda daily. As my baby grow, her needs also evolve and I am invited to follow her growth with an open mind. The abounding grace I receive through prayer has helped me to have enough time and strength to learn about supporting my child’s development. One of the most fun thing we have decided to apply is Baby Led Weaning method of introducing solids. I had so much fun watching my baby enjoying her food and growing in her fine motor skills. Through all these, the joy of the Lord is my strength!

What brought me through from the peak of my flare up (with the autoantibodies level 200 times above the positive trace) to where I am now; is this scripture;

do not fear, for I am with you,
do not be afraid, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my victorious right hand.

Isaiah 41: 10

A dear friend of mine reminded me to let the One who loves me hold everything up for me. That encouragement has helped me in my process of surrendering and that eventually led me to my rest in trust of the Lord. There’re still heaps to figure out and many are graces that I need. I pray that sharing my story with you will give you a sense of awareness about MG and that you are also encouraged to live in your victory through your circumstances.

With lots of Love,
Irene