Goodbye 2021

Just like that... I find myself staring at the calendar and realizing its the 31st of December of 2021. This year has been a blur. Time has zoomed past and it felt like I was just trying to catch up most of the time. I remember as I was reflecting at the end of 2020, the Lord had prepared me - that my health would deteriorate but that He would be with me throughout. He still reaches me in places and mediums that would touch me the most - being in my car, listening to music. I was reminded of His many promises through the Malaysian Blessing song - He will bless me and keep me, and give me peace amidst the tumult I experience and that He is surrounding me. 

The verse of today is Psalms 73:26 ~ "My flesh and my heart may fail, but God is the strength of my heart and my portion forever". How apt is this verse. God's reminder for me last year was that He would be with me, no matter what. And this year end's reflection is yet again a reminder that He is my strength AND my portion, forever. 

I wanted to give context to this verse, and hence I looked up the whole Psalm. But I'd like to highlight Psalms 73:23-26

Yet I am always with you;
    you hold me by my right hand.
24 You guide me with your counsel,
    and afterward you will take me into glory.
25 Whom have I in heaven but you?
    And earth has nothing I desire besides you.
26 My flesh and my heart may fail,
    but God is the strength of my heart
    and my portion forever.

I stumbled upon this Benson commentary that touched my heart.

My flesh and my heart faileth — I find, by sad experience, my own weakness and inability to encounter such temptations, and bear, with becoming patience and resignation, such troubles, as I frequently meet with; yea, I find myself a frail, dying creature, that shall shortly return to the dust. Both my flesh and heart, my body and soul may, and, unless supported by God, will soon fail. But God is the strength of my heart — I have found him so; I do find him so, and hope I ever shall. As if he had said, Though I have no strength in myself, I have it in God, my never- failing refuge, to whom I will trust as long as I live. Hebrew, צור לבבי, tsur lebabi, the rock of my heart, a firm foundation, which will bear my weight, and not sink under it. In the distress supposed, he had put the case of a double failure, a failure of both the flesh and heart; but in the relief, he fixes on a single support; he leaves out the flesh, and the consideration of it; it is enough that God is the strength of his heart. He speaks as one careless of the body; let that fail, it must, there is no remedy; but he is concerned about his soul, to be strengthened in the inner man. And my portion for ever — He will not only support me while I am here, but will make me happy when I go hence, happy to all eternity. The saints choose God for their portion; he is their portion; and it is their happiness that he will be their portion for ever; a portion that will last as long as the immortal soul. Reader, consider this, and make choice of this portion without delay.

Rock of my heart

I really find that God reaches out to me when I find the time to be still and know He is God and is with me. Again, the picture of me being in the stream comes up when I think of Him being the Rock of my heart. He is my never-failing refuge, a firm foundation that will bear my weight, and not sink under it. 

Such words give much comfort to my ever-restless and tired soul. Truly, amidst the trials I've faced, God has shown that He is a Good and Gracious King and provides what I need to face these difficult times. He doesn't promise an easy life, but that He will be with me, granting me stability, throughout my ordeals. 

As I was reflecting on the year, the song "You're Still God" by Philippa Hanna came up in my mind. And yet again, another appropriate reminder that no matter happens, He is still God and He reigns. And my task is to fix my eyes on Him (Hebrews 12:2) and to trust that He is orchestrating things out for the glory of His Kingdom, and I am part of that plan. And all His plans will work together for good (Romans 8:28) and are meant to give me hope and a future (Jeremiah 29:11). 

You're Still God

When all foundations have been shaken

When I'm left standing in the dark

And all I feel is my heart breaking

You still reign and You're still God

And when it feels all hope has faded

The heavy questions hit so hard

And though my soul may feel forsaken

You still reign and You're still God

Though I can't see what's before me

I know that I can trust Your Heart

And this one truth will be my story

You still reign and You're still God

I will declare that You are with me

Though voices whisper that You're not

You'll never leave me nor forsake me

'Cause You still reign and You're still God

Though I can't see what's before me

I know that I can trust Your Heart

And this one truth will be my story

That You still reign and You're still God

Though I can't see what's before me

I know that I can trust Your Heart

And this one truth will be my story

That You still reign and You're still God

I know You reign and You're still God

And when my enemies surround me

I'll trust the victory of Your Cross

And fix my eyes upon You, Jesus

For You are God and I am not

You are Good and You are Faithful

As You have been from the start

You work in all things for Your Glory

'Cause You still reign and You're still God

And though I can't see what's before me

I know that I can trust Your heart

And this one truth will be my story, yes it will

That You still reign and You're still God

Yes, this one truth will be my story

You still reign and You're still God

Gasping for Air

 Interestingly... just a day after writing the post about finding footing, I had to be hospitalized as my difficulty in breathing became unbearable. Tobe honest, during the eve of me being admitted to the hospital, I felt my resolve to fight for my life slipping away. I literally surrendered my life to God, that if He were to take me - I was ready. But after a few hours of disturbed sleep, I woke up and relented that it was not time yet for me to return Home. but two friends had contacted me, both suggesting that I needed to go to the hospital. 

Long story short, I did go to the hospital and it triggered a series of events - which required my sisters to take action since I was incapacitated. after much testing, I was diagnosed to have a set of lungs that were only functioning at 64% capacity (a healthy person's lungs is at least 80% and above). The bronchoscopy indicated that my lungs were highly inflammed and weak, and my airways were occluded due to the thick phlegm and mucus in my lungs. 

"You have asthma bronchitis and hyperventilation syndrome. This is not psychological. It is an actual medical condition and will require longterm management"

"It's good that you came in now, because this could turn fatal"

These were words that were uttered by the chest physician. Was I numb to yet another diagnosis? I think I was still trying to process that I was in the hospital for the 3rd time this year. and a conversation I had with Ann, that my vitals tend to show that things are fine but when we dig deeper, we tend to uncover that something is wrong with my body. And again, that hypothesis rang true. 

While in the hospital, Jo reminded me of my reflection - that I was reminded to find footing in God, but she wondered if it was God's gracious plan to prepare me for this hospitalization and diagnosis - and not so much about having to deal with my parents/family.

Who knows... but definitely without God being my anchor... I would be really bitter with how things are. As I type this recollection, the song, "Oceans (Where Feet May Fail)" comes to mind. Specifically this particular verse:

Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You've never failed and You won't start now

It's been a trying year, Lord. A year that has taught me much about leaning hard on Him. It is no surprise that Matthew 11:28-30 has been coming again and again as a reminder for me to run to Him with my burdens.

28 “Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.”

Lord, as I gasped for air, please remind me that my breath comes from You and that I will heed Your Word and be directed by Your path.

Finding Footing

 

I've been feeling overwhelmed, feeling like I'm bearing the weight of my family on my shoulders. And it made me realize that my family's disengagement and lack of involvement towards my parents health is contributing to me absorbing all the anxiety and responsibilities. 

Again, the Lord provided a space for me escape, although this time I was dragged into the drama quite abit due to the many calls I was receiving. But i'm also really thankful for a friend who was closeby, providing the comfort I needed through physical touch (my love language) and prayers. I felt bad because I had to deal with so many issues but both J and M were very gracious. 

While I was in the river, what drew my attention most were the raging waters - the forcefulness of it and the potential danger of being swept away. But navigating myself to and through those waters, and finding strong footholds for me to plant myself firmly against the beating of the waters reminded me of how I needed to find my footing in God. I've been beat up all over, to the point that I am spent - the sense of tak larat lagi. yet, when I was able to position myself safely, there was no fear of danger. 

That said, I feel like my body is giving out. It is taking extra effort to even breathe. I find myself having to use my inhaler more to ease my breathing. My chestpains are back with a vengence. Every muscle in my body seems to be aching. And I wonder if my pain threshold has lowered or my pain intensity has increased. My migraines are also overtaking me and yet, I am trying to push myself way beyond my capabilities to function because I'm the sole caregiver. I'm angry. Angry at the self-centredness and passiveness of my family. I realize I'm just trying to hold out until I get Safe Haven running or at least have it's foundations in place, then I will really be able to go. I honestly don't think I have much left in me. Lord, help me find my footing in You and that You will grant me the strength to carry out the work You have entrusted me with. Please provide me with the strength that is needed till I return Home. 

Priorities

 For the last two years, especially with the pandemic and lockdowns, I've had to be the sole caregiver of my parents, especially with all my sisters being in different countries. 

I find this role, to be extremely taxing - to be a caregiver, when I myself, have a truckload of health issues that I need to attend to. My health seems to have deteriorated further due to the stress of being responsible for pretty much everything in the household. I find myself wanting to prioritise my needs but it is SO hard. and it makes me so angry when my parents don't even try to cooperate or help. 

Early October, I displayed symptoms that seem to suggest a TIA - disorientation, weakness in my left arm and leg and a stabbing migraine at my head. and ever since then, I've noticed that my left hand is weaker than before and I get out of breath quite easily. 

I'm just so exhausted and drained. and whenever I ask for help from my sisters, I still end up doing most of the problem-solving. and it pisses me off. what's the point.

sigh, i really just needed to get this out of my system because I feel my anxiety, depression and rage is getting to me and it feels really overwhelming. I'm struggling to function. 

Sobering Reminder

 Today, I celebrate my 7th anniversary of the day I had my first neurosurgery for Moyamoya. It's a time of thanksgiving and gratitude that I've survived up till now.

And then I see a post on FB from Tara, a fellow Moyamoya warrior, a friend I've made through our shared experience with this disease. An 8 year old from Australia with Moyamoya had suffered a hemorrhagic stroke on Friday, and he had passed away today.

An 8 year old. That would mean he was just a year old when I underwent my first surgery. It just makes me recognize how blessed I am to have survived for so long, without any significant strokes thus far. It's also a sobering fact that this disease is progressive and is nondiscriminatory. Our lives could just be snuffed out, just like that. Truly, it is this realization that mortality is very real to us, Moyamoya survivors. We can't take life for granted. While I celebrate a potential new lease in life today, a family is mourning a loss of life. 

I don't know who this kid is, nor have I ever spoken to his family... but I really feel for them. Lord, please grant them comfort in the midst of this painful loss.

 

The Journey of Ups and Downs

 I've always pictured the journey of life to be a race. Also, maybe due to the language used in the Bible (2 Tim 4:7 ~ "I have fought the good fight, I have finished the race, I have kept the faith") and my association to what a race is - being a 100m sprinter during my school days, the immediate image that comes to mind when I think of a race is that the path is direct and straightforward. 

But after living more than 3 decades and collecting illnesses along the way, I've come to reshape my image of this race to be a trek that crosses through valleys, fords rivers, climbs mountains... you get the idea. And the pitstops... Again, as a sprinter in the past, we never had pitstops. I just needed this burst of energy at the start and pray that I'd reach the finish line the quickest. And I've never run a marathon in my life. Being an asthmatic, I never had the lung capacity and stamina to do it. I still remember being pushed to run 400m by my house leader even when I had resisted, stating my asthma but I was still made to do it. Halfway through the race, my lungs gave way and I had to stop. 

So... endurance hasn't been a strong suit of mine. 

But now as I bring this analogy to my journey with Moyamoya and my other chronic conditions... it feels like my endurance is tested time and time again. I acknowledge the pain - emotional, mental and physical, that I've experienced... but I do also recognize how this has sparked a deeper personal and professional growth. 

I realize that life in itself is not an easy journey... but sometimes, when I factor in my health... it just feels so much more difficult and it weighs me down. I feel like there are barriers in front of me - they could be physical barriers - things that I realize I cannot do anymore because it will bring harm to my body. But I've also been noticing my psychological barriers of late. I've been feeling weaker and more vulnerable, and that makes me more cognizant of my mortality. 

I feel like i'm teethering between my determination to stay alive to do what I want to do... and wanting to surrender to God and say, I'm ready to go Home... because I am. Honestly, I even wonder if I'm suicidal. But I know I'm not actively wanting to take my life. I'm just ready for death to take me if it were to happen. 

My depressive episodes have been creeping in more this year. I find myself withdrawing at times and just crying by myself whenever exhaustion overwhelms me. And this exhaustion isn't just physical exhaustion... it feels like it cuts right through my soul. And I try to distract myself with work and keeping busy... but maybe what I need is just space to be and to feel the pain I'm struggling with. What is this grief that I am experiencing? I don't really understand it. And I wonder if this is what I will be grappling with till the day God decides to bring me Home. 

Spent

I came into the year 2021 recognizing that it would be difficult. I just didn't know the battle I would be fighting and enduring. 

Spent.

This seems to be the word that pops in my mind when some of my friends checked on me today. It's been a whirlwind experience - trying to help myself recover from my muscle tear, while bearing sole responsibility to care for my parents. 

I received a call last Friday - my paternal aunt had a ruptured tumor in her pelvis AND she had contracted Covid. I did what I could to get information and to see how I could help, while juggling work and home responsibilities. My to-do list seemed endless. I developed a severe migraine over the weekend, which meant I could barely function. Then Tuesday came, and the shocking news came - my aunt had passed. And I spent that day trying to figure out how to support my surviving aunts who were supposed to be in quarantine but was forced to run around. 

I'm thankful a friend volunteered to make calls for me to get information as I had used up spoons I couldn't afford to use - depleting my energy and feeling the strain, the literal burden on my shoulders. And I'm thankful for two conversations I had that lifted my spirits - just reminiscing an old memory of the fun times we've had. 

But I think I'm feeling the effects of my depleted resources. I'm feeling spent, drained beyond all measure, while allowing myself to grieve. I'm still very much in the state of shock as my aunt's death was so sudden. I went for my physiotherapy today and my physio pointed out that my neck, shoulder and torn muscle area was swollen and tensed. And my physio warned that I need to be careful in order not to re-injure myself. It feels like my months of physio has become somewhat undone.

sigh.

 

A Month Past and Life as It is Now

My bestfriend reminded me that it has been exactly a month since I rushed myself to the hospital due to the excruciating pain due to the torn muscles I suffered. 

Just like that. Amonth has passed. 

In this one month, I've been challenged to slow myself down and give myself space to ponder. Coincidently, I had also finished the book that has kept me engaged and encouraged me to reflect on it's personal lessons for me.  Honestly, I do get a bit restless at times, but all in all, I have enjoyed this extended break.

Slowing down has been good because it has helped me be more aware of my own reactions and responses when presented with different things on a daily basis. It has helped me deepen my appreciation of the various encounters I experience too. I tend to walk really fast. In my younger, more athletic days, my preferred mode was to run from one place to another. haha. But I realize that I've been taking my time enjoying the scenery around me as I head to the hospital for my physiotherapy sessions (but still ensuring I am not late). And I chuckled, when I noticed people zooming past me as I ambled on.

As I am trying to ease back to work, I am aware that it is so easy to fall back to the trap of "getting busy" again. But maybe it's a trial and error thing. Most importantly, it is that awareness that could get me back on track - to not overload myself, if that so happens. Anyway, while the searing pain is more manageable now, I do need to pay attention to my body and be more sensitive to my pain threshold. As a person who lives with pain every day, it is hard to gauge when pain is becoming more of a problem. Again, trial and error perhaps? 

Healthy Response

I realize for the most part, we are inclined to problem-solve when people share certain issues to us. In order to be/feel helpful, we may think it necessary to give our opinions or counsel to assist. 

I notice this tendency whenever I share my struggles (not limited to my journey with ill-health and pain) and people seem eager to provide suggestions (read: unsolicited advice) or they will point out what I did wrong that made me struggle more. Sometimes, depending on my energy and/or intimacy to said people, I may either just shut off and not share anymore, or I will take the time to express how and why those comments were unhelpful and what would be a better way to respond. If people truly mean to be supportive, they will actually take this to heart. 

I know what has hurt me the most is when people decide for themselves that they know more about my medical condition than I do, and proceed to tell me what to do. Or they will have certain far-fetched perceptions about my condition and they have "alternative" strategies for me to engage in and everything will be resolved.  

One interaction that I find to be REALLY helpful is when this is asked:

"Would you like me to be on problem-solving mode or to just give you the space to rant and for me to listen... or both?"

This was initiated by a dear friend and I really appreciate it. She doesn't assume that she knows what I need and she gives me the choice as to how she will support me. I want to emphasize that she doesn't interrupt me while I'm talking to ask this question either. She waits till there is a pause. Sometimes she forgets to ask this question and may start to problem-solve but she will then realize it and would apologize for not asking. But her active listening skills are so on-point that I already feel heard by her.  

What are active listening skills?

• looking at the person you're talking to
  (if this interaction is done online/text messaging, focus on the message)
• being fully present as you listen, don't be distracted by preparing what you're going to say in response 
• be patient and not interrupt
• paraphrasing what has been said to ensure accurate understanding
• empathizing with the person's emotions and experience
• being honest with own capabilities.
  (This is most important. I appreciate it when people tell me honestly that they don't know what to say/do in response, but that they are here for me. I value this more than someone pretending to know what to do and ending up making things worse) 

These are really helpful skills that would help you be present for others. More often than not, what is most helpful aren't the advice you can give... but your willingness to be there for someone when they are in pain, and to give them the space to express that struggle, that means a lot more.

Superhero, not.

An unpleasant encounter occurred a few hours earlier, which made me realize that I have a strong negative reaction whenever anyone labels me as attempting to "act like a superhero". I observed that every fibre of my being detested being called that. And I recalled the many times I would be reactive in the past when this label is placed on me. 

I do admit that I tend to bear more pain than needed and it's been a pattern of mine to take on responsibilities even when i'm swamped. But of late, I realized it was a habit that was formed due to my personality and the dynamics of many of my relationships. I just tend to push myself to the limit. 

To give context to this reflection - I had gone back to work today, 3 weeks after my hospitalization. But I had planned for it to be only about 2 hours, to supervise my intern, and that was it. But on hindsight, I underwent a lot of preparation just to go to work for 2 hours. 

I had discussed and contemplated whether to do work from home and conduct an online supervision but I recognized that it would be difficult to maintain certain ethical standards if I were to work from home. So the best option was to go to the office. 

Then I was faced with the decision on how to go work. Currently, I am only given the green light to drive around my neighbourhood to boost my confidence to drive again. So driving was out of the question. Should I call a Grab (a ride-sharing vehicle)? Then I realized that it is not feasible as it isn't cheap to use this service and my supervision fees would literally go to paying for my ride to work. So I decided that taking public transport would be the way to go. Not only has this been recommended by my physiotherapist as a form of permitted exercise, I also took into account that I am not allowed to carry anything heavier than 2.5kgs. So I ensured that my bag only had the bare necessities - i.e. wallet, kindle to read when I am in commute, a small water bottle, an umbrella and my medications. And always being mindful that I was carrying my bag correctly, straps on both shoulders instead of it being slung across one shoulder only. I had even intentionally planned for my supervision session to be at a certain hour, as it would not be a peak period of commuters to board the train, hence increasing my chances of finding a seat and avoiding the crowds. While I was preparing myself to go to work, I had to consider what to wear - no long-sleeves or clothes made out of thick material because the heat could be suffocating and my energy will drain quicker that way. As I had gained back a lot of weight due to thyroid problem, I had to ensure that the shirt I wore was not too restrictive of my range of movement, which may in turn injure me further. 

Even with these precautions, I still experienced some pain at my affected area after returning from work, and my body was tired. And sometimes, when I am not 100% mindful of my body movements, I inadvertently injure myself. As I was closing up my office, I had absent-mindedly reached the door handle with my left (dominant) hand and pulled it, causing a sharp pain. While gasping from the pain, I immediately switched to my right hand to finish locking up, but the damage was already done.   

I had related to a friend the pain I felt after coming home from work, who then decided to comment that she knows I am trying to be a hero... and I was really hurt by that comment. To me, it was such a callous remark. I had not told her the thought process I went through to be able to go to work for that two hours. She did not know the amount of energy I expended, days before, trying to consider options to adapt and be able to function minimally, without sabotaging my recovery.

At the end, I chose to give myself space to be upset without lashing out on said friend.
(Edit: I initiated a conversation with her when I knew I could respond in a healthy way, and not be too influenced by my emotions, and we managed to sort things out)

But it was also a painful reminder for me - that as a person with deteriorating health, it takes so much effort to engage in meaningful activities. I was just trying to go to work for 2 hours. But I spent more than 2 hours figuring out how to do just that. I had to carefully plan/adjust according to what I could feasibly do and to make the necessary arrangements. So really, I don't think I'm trying to be a superhero here. I am not acting on impulse. While reflecting on this, I realized one of the reasons why I've been suffering from insomnia these few nights - my mind has been fully occupied as I grapple with ideas to ensure that I don't hurt myself further while slowly getting back to some sense of normalcy.

On the surface level, a healthy person may not think much about going to work for two hours. But for a chronically ill person, even just being able to consider working for two hours takes a lot of effort. I am already trying really hard to set healthier boundaries and to find ways to care for myself, to not push myself too hard. Sometimes, even with all these precautions, my body may still suffer and experience the fatigue and pain. And the reason is because my body is already weak. 

One of the reasons why I was inclined to push myself to my limit and develop a high threshold for pain is, if I stop myself from functioning everytime I experienced pain... I will likely be in bed for most of the day, without being able to engage meaningful with others. And this is not how I want to live my life. But I am honestly trying to carve out more healthy ways to function with intention. I just can't help that I suffer from chronic pain.  

So my sincere plea to people out there who are healthy... your words bear a lot of weight. Please be mindful of the effort it takes for chronically ill people to function and to live meaningful lives. Please understand that many of us who are ill are faced with many obstacles to live normally and more often than not, the best options that we have carefully chosen for our health may still hurt us. Just because our body is broken and can be uncooperative. 

So please pause before making any judgment calls on our behaviours. Your intentions may be well-meaning but it can be disempowering for us. Because we are trying. I am trying. You have no idea the unseen, background work that happens before we engage in certain activities. I try my best to count my spoons often. And it hurts when hurtful comments are carelessly tossed at me.  

Please be compassionate towards our struggle, my struggle... because this is my reality.

Vital Support

As I look back and reflect on this recent "health scare". One of the main things that I am very grateful for are my close friends who showered me with so much genuine love and care. Without them, this experience would have been a whole lot harder to stomach and to endure.  

Even before knowing that I would need to undergo my recent PLDD surgery, I had a chance to spend quality time with a few close friends, as I expressed my inmost thoughts and revelations about where life was heading for me. The level of emotional intimacy that I could share with these friends is a treasure I will always cherish. What I didn't anticipate was how they (and some others) would later play such important roles in supporting me while I was in the hospital. To some extent, the recognition of how fragile life can be may well have prompted some of my relationships to deepen because we do not want to take our friendships, and our time together, for granted.

I recall a quote from the book, Tuesdays with Morrie by Mitch Albom, "The truth is... once you learn how to die, you learn how to live." This statement makes sense to me. It is with me recognizing that life is fleeting - and to be honest, death is inevitable but I may be more attuned to it due to my health issues - that I am attempting to be more intentional and mindful with how I spend my days, and wanting to make memories with loved ones. 

One thing I've learned - the topic of death and dying is not at all a pleasant conversation piece, but it is needed, especially when I am living with a non-curable and progressive disease - and by the looks of it, my body is just deteriorating as a whole as I accumulate different medical conditions. And to have friends who are willing to sit with this reality and to talk about it, even when it is painful, is a blessing. 

Taking initiatives, taking the first step. This is an important pattern that kept popping up. For me, I needed to consider who to reach out to and to take the initiative to ask for help. To allow myself to be vulnerable. To be okay with the fact that I don't need to be the strong one and to recognize that I can't take care of myself all the time, as much as I've been trained to. 

A friend had actually thanked me for asking her to take me to the hospital because it gave her the opportunity to show kindness and care to me, and that blew my mind. 

Physical touch is a love language for me. A friend had reached out to hold and caress my hand when she saw that I was in agony. From the surface it may seem like a small gesture, but that provided me with so much comfort amidst the pain I experienced. I received much-needed heartfelt hugs too. I know we are meant to physically distance in this pandemic era, but again... these gestures made me feel loved. 

Two friends naturally began to verbalize their love for me whenever we interacted and this too always helps me feel warm and fuzzy. Honestly, I wish I am brave enough to do this with a few more friends that mean a lot to me but I realize I tend to edit myself, as I am afraid of rejection or even causing a misunderstanding. But maybe it's time for me to take that initiative too, no? I don't want to regret not letting my loved ones know how I feel for them. 

A small group of close friends, some of them were not mutual friends, mind you... decided to set up a whatsapp group to update each other about the progress of my condition. If this isn't initiative, I don't know what is. 

I had friends who took the initiative to visit me when they could to provide me company and to check in on me. And they each provided their unique professional AND USEFUL expertise to weigh in on my healing and the personal care that I needed.

I had friends who generously offered to house me if I needed a quiet space to recuperate.

I had groups of friends and members of churches praying for me daily. 

Honestly, I am still in awe at the lengths my friends went through to support me through my physical and emotional pain. The thoughtfulness conveyed. The effort they put in so that I won't feel so alone in this lonely journey of ill-health. These friends made me feel safe, and I knew I could rely on them, whether it be my physical or emotional needs. There may be people in my life that will let me down but I know for sure that I have a few others who play significant roles in my recuperation and well-being.

Being a chronically ill person sucks, there is no doubt about that. But having a community I can turn to and one that so readily journeys with me is a true blessing. It is really a God-given gift that helps me pull through. 

At the end, having a strong support system has been imperative for me to cope these difficult times. And I just can't express my gratitude enough for them. 

Journeying with Illnesses

When I first started this blog a few years ago, I had expected to only pen down my experience with Moyamoya. I did not expect my health to go downhill with me collecting different health conditions, but that is my current reality. So this blog has morphed into an online journal about my journey with my chronic and ever-accumulating illnesses.

I thought i'd just recount what happened recently. My reflections will come in later posts. 

Year 2021 started with me feeling pain in my neck and back, numbness and tingling/pins and needles on my arms and fingers. The pain just kept intensifying over time but a problem I now realize as a person suffering from chonic illness(es) and who has a high pain threshold - pain becomes a normal part of your daily life. Pain typically signifies that something is wrong but what happens when you live with pain EVERY. SINGLE. DAY? 

You become desensitized to it. As I had become. Can you imagine wondering and worrying about what this or that pain means, when you live with it everyday? Also, because I got so used to it, pain, to me, stopped becoming a problem. I could take it for the most part. Even when the pain did become somewhat unbearable, I would automatically and unconsciously dismiss it.

Until a dear friend started taking note of my symptoms and told me that what I was experiencing is NOT normal. 

Long story short, an MRI I did showed that my neck was showing signs of degeneration, which caused several neck bones to clamp down on my nerves. That's what was causing all the pain. After several weeks attempting to make lifestyle changes, the pain did not subside and hence the decision was made to do a surgery called PLDD - the Percutaneous Laser Disc Decompression. This procedure involved using lasers to burn off the bones that were curving in and compressing against my nerves, thus releasing the pressure and also relieving me of pain. 

My surgery was scheduled on March 5th, with no complications. It was about a 2 hour surgery. The surgery worked and I was supposed to have a neck collar attached to me for two weeks while I was on medical leave. I, however, did not get the rest I needed due to the many things on my plate - responsibilities at home and work just wouldn't leave me alone even though they knew I had just undergone surgery. 

Again, I tolerated A LOT of pain and I was rushed back to the hospital when the pain became unbearable. Unbeknownst to me, I tore a few muscles at the back of my shoulder and near my neck. And it resulted in a week-long hospital stay. And yet again, instead of getting any peace to rest and recuperate, I received frequent messages from my family, expecting me to be on top of things at home, and also work messages. And it really added to my stress and frustration which unfortunately, worsened my condition. To top things off, the patient in the bed next to mine wasn't really considerate which contributed further to my feelings of misery and exhaustion. 

Thankfully, a close colleague suggested that if I could be discharged, I could stay with her to get the rest I needed. And I ended up staying with her for nearly a week before heading home. 

I am currently still undergoing physiotherapy twice a week to stretch out my muscles and to rebuild strength. Apparently it will take 6-8 weeks for my life to return to some type of normalcy, but for my muscles to fully heal, will be 6 months. I've also been experiencing dizziness and nausea (and vomiting) of late. And I have no idea what's triggering it. Sigh. Sometimes it feels like I am engaged in an internal battle with my body. But that's the way it is.