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.

Small Victories

 I recently got a call from a doctor working at the hospital that I had done my brain surgeries at. They wanted to know if I was interested to participate in a local research they were currently conducting and they were recruiting Moyamoya patients. I can only imagine how small the sample size would be since this disease is so rare. 

Anyway, they would like to study a specific gene, namely the RNF213 and to identify if this particular gene contributes to early onset stroke. And what is my contribution? Two small vials of my blood. I'm blessed enough not to have experienced major strokes as of now, but I have had a few TIAs aka mini strokes. So according to their hypothesis, I may have this gene. If this is proven, they would be able to use this knowledge to provide early medical intervention and treatment before a stroke occurs in the future.

As I was coming back from the hospital today, I felt this sense of pride and achievement. All I did was consent to my blood being taken as part of the study and allow my arm to be jabbed. And it only took one try! HURRAY! But it felt like something I COULD be proud of. And I am thankful for that. I've lamented in the past that I can never be a blood donor since I don't even have enough/proper blood flow for myself. But now, being able to donate just a little of my blood to a medical study, just filled me with gratitude that I can still contribute to society in small ways.

It's the Small Victories.  

These are my small victories that I can relish while I live with this chronic illness. It's a reminder to seek out and be aware of the little things I can do to make life meaningful to me and to others around me. 

This is definitely a memory I would like to look back at with joy and contentment. 

yet another...

 I was hospitalized two weeks ago as I had difficulty breathing. It's not Covid-19. Something I am thankful for. I was subjected to MANY tests. I was poked with lots of needles throughout my stay as they tried to figure out what was wrong. They concluded it was a lung infection - what exactly, they couldn't not pinpoint. 

What they discovered in their extensive tests and prodding was that I have Grave's Disease. What I thought I had for two years was hyperthyroidism. But actually I have Grave's Disease which is an autoimmune disease. And it can cause hyperthyroidism. The doctors fear that this has been overlooked and untreated Grave's disease can cause a lot of further complications. 

To be honest, I have put this diagnosis aside as I was not ready to pay attention to it or to accept it. It's just been so draining. It's yet another diagnosis to add on to my already very sickly body. I just need time to process it and to come to terms with it, but it just feels like it's another huge hurdle that I need to overcome. 

I've been feeling depressed but trying to function as normally as I can. And to some extent, I know I am putting up a face... a facade to keep myself sane. But I know my feelings of lowness and demotivation needs to be taken notice of, and I need to care for myself amidst my busy-ness and lack of sleep. 

I feel God has been using different ways to show that He is there for me. A dear, dear friend in the US messaged me when I was in tears just to check in with me and I started sharing with her my sadness and she held that space for me. Also, this popped up on social media that is giving me some hope and I'd like to leave it here as a reminder to myself and for others who are struggling: