Sick again

 So... I've fallen sick again. Just before CNY came, I caught a bug from my sis who was deaf to my instructions to mask despite me badgering her to - she lives with people who are vulnerable to illness and she doesn't seem to think how it could affect others. It's more than a week since I started coughing and I have not recovered. 

I've been feeling like crap thanks to the constant coughing which then impacted my weak lungs. I started wheezing and I needed to use my strong Symbicort (that contains steroids) which in turn messed with my menstrual cycle.. also , my sinus started getting blocked causing my face to hurt. I had coughed so much that there were blood in my spittle. Do to my constant coughing, I was barely sleeping causing me to be utterly exhausted, and giving me migraines. There was a point when my heart rate shot up to 117 and I experienced pins and needles in both my hands and fingers.

It made me realize that what's a "simple" cough for my sis turns detrimental for me. What starts from a simple cough really spirals to other issues for me due to my health conditions. I finally went to see the doctor after trying to allow my immune system to take care of it but to no avail. The doctor had to put me on the nebulizer because my lungs weren't clear and she even told me that I should have gone to the ER since I've had some difficulty breathing instead of depending on my inhalers. 

It makes me realize how much physical discomfort I tend to tolerate because it has become such a norm for me. Also, she asked if my current symptoms felt as bad as when I was diagnosed with asthma bronchitis in 2021. I found myself not being able to identify if it was as bad. but I decided to say no, because I remember feeling like death back then. Now, I just feel really uncomfortable but I didn't think I was dying. 

Anyway, I was given 5 different types of meds to control my asthma, to break down the mucous build up in my ENT, and for my cough and phlegm. I am not coughing as much as before but its still quite cumbersome. I just hope I feel better soon. I've had to cancel work, and I've just been feeling exhausted all the time. January has come and go just like that, and I know this year's resolution was for me to slow down... but I can't help but feel unproductive. God, please help me be gracious and gentle to myself. 

10th Anniversary of 1st Brain Surgery

 Today marks the 10th anniversary of my 1st brain surgery. This milestone feels rather surreal. How time has flown. That said, my chronic health issues persists since my disease is a progressive yet incurable one. Very recently, my symptoms emerged with a vengeance - severe debilitating migraines which caused nausea and vomitting, amongst other symptoms. A few days after, I was suddenly overcome with excruciating pain down my spine and legs, and after lying myself down, I could not move nor turn. And I had to be transported to HUKM's ER via ambulance. Thankfully I was able to walk after hours of monitoring and having been pumped with painkillers.

For the next few days, despair set in. To see a seemingly healthy looking person staring back at me in the mirror caused quite a mental disconnect with my actual condition, and the grief washed over me in waves. This time, anticipatory grief emerged, recognizing that this would probably be how paralysis feels like in the event of a major stroke.

I gave myself space to cry and lament to God. ZJ shared Psalms 28 and grieved with me. And I've been listening to MercyMe's "Almost Home" and Natalie Grant's "Praise You In This Storm" . Also, God worked in mysterious ways. As I was scrolling through my phone one day, a picture of a girl staring at herself in the mirror popped up (pic 4). And the girl in the mirror leans over to give herself a hug. Seeing that touched me to the core and it made me tear up. Having that space to acknowledge my frustrations to God and knowing that He listens to my pain gave me peace that I am not alone. I also had people praying for me - which I am thankful for. I recognize this is a cycle that I'll experience throughout my lifetime as I battle with my disease and it's ok to experience those difficult episodes. God will continue to hold me and comfort me during those moments.

For now, I'm still in recovery - having "torture" sessions with my physiotherapist as she tries to loosen and stretch my tightened muscles, while I try to get back to some normalcy (work, rest, meetings, etc).

Revisiting New Me and Old Self

Yesterday marked the 9th year anniversary of my 2nd brain surgery. It's amazing how time flies even though sometimes the daily challenges seems so long and drawn out. 

The topic of health, life, death and struggle came up today as I had lunch with a friend. And I shared with her my journey thus far - me wrestling with depression post-surgeries, the survivor guilt that I experience when other people I know pass away within a short(er) duration of their illnesses, and sometimes I just wonder what else is in store for me as I continue to add more health problems to my "collection". And yet here I still am, albeit looking a little more worse for wear at times. 

During this conversation, I recalled my blogpost where I spoke to myself in the 3rd person - Old Self and New Me. This time, when I reread the post, I realized that having to let go of Old Self doesn't hurt as much as it did back then. In some ways, I have come to acknowledge that I will grieve for the departure of Old Self - the energetic, athletic Old Self that had no pause button. As I reflect on Old Self - yes, there were things I liked about her, the fake-it-till-you-make-it confidence, how Old Self pretty much showed her strengths all the freaking-tiring time and rarely faltered. But these were very much facades - performances that I was taught from young to act a certain way due to the status of my family and certain misguided understanding of how being "more than conquerers" and "being victorious" was supposed to look like.

I know I gave New Me a hard time when she emerged out of necessity. But as I have come to know her more and more each year - I've begun to see her worth. In fact, I recognize that:
*New Me has given me space to be vulnerable,
*New Me helped me realize that I don't need to feel/act strong all the time,
*New Me taught me to be more assertive and have better boundaries because I would suffer whenever Old Self insisted to push me to function when I can't/shouldn't. 
*New Me helped me to connect better with myself, with God and with others. Hence, New Me has helped me be more authentic in my relational, emotional, psychological and spiritual walk. 
*New Me taught me to be gracious, patient and compassionate. 
*New Me made me realize that I truly cannot live without God, and all my strength comes from Him and not from me. 
*New Me pulled down a lot of the walls I put up and to be ok with asking for help. It also helps that God provided me the support that I needed in the form of loving friends, amidst others who may not be as understanding.
*New Me taught me to slow down, to learn to be, and not get too caught up with just doing
*New Me improved Old Self's innate ability to be reflective and sensitive to others to be more self-aware, hence taking action to meet my needs and not just for people around me. 
*New Me helped me to design a workshop on emotional regulation for teenage girls, derived from the lessons I've learnt from New Me's struggle. Something Old Self would not have had the maturity to process and share. 

I know New Me will continue to evolve in some ways as my chronic illness journey continues but it doesn't seem as bleak as before. What felt shameful in the past feels like a lesson I can share with others now. Interestingly, I came across this quote by Henri Nouwen recently and I resonated so much with it. 

This quote also reminds me of the angry question I posed to God in my earlier struggle with illness and limitations - "Why did God give me the heart to serve but not the body to go with it?" I believe I have the answer now. The answer is that God did give me body to match this heart to serve. I needed this broken body. This kintsugi-ed body was required to connect better with myself, others and with Him, to serve more genuinely with His Strength and Will, and me not taking any credit for it, because it is truly by God's Grace that things have been possible amidst and despite my limitations.
His power is made perfect in my frailty and weakness (2 Corinthians 12:19)

Old Self, I love you. You were there for nearly 30 years of my life so I know that although some parts of you have had to leave, the memory of you and some parts of you will always remain in me but I will long for you as a whole once a while. And that's OK. You had your usefulness back then. I know I will miss the part of you that can work full time and function for hours like an energizer bunny with little physical consequences and I appreciated the grit and stubbornness that you provided me back then but it wasn't very helpful anymore, not all the time anyway. So, Old Self, you're not fully gone. There are things that I'd like to retain from you, Old Self. Your problem-solving skills, determination, cheekiness and wit, your musical ear, and most of all, your heart for others. You're gungho but you'll need to collaborate with New Me so she doesn't suffer. So I don't suffer. I accept that you will pop your head in once a while, but we'll compromise. 

I am also learning to be less hard on myself, to be less hard on you, Old Self, when your unhelpful tendencies such as pride and perfectionism emerge, because change is hard but it is happening. slowly but surely. So New Me, please continue to bear with me. I love you too. And thank you for never giving up on me even though we've gone through really difficult moments. Please continue to help me to live meaningfully and intentionally. 

I know this seems weird as I was inspired to create this cover when I was attending a grief workshop back in 2020. But I think I truly understand the personal impact this song has for me now as I've had to work out my grief and loss with Old Self. So in a sense, this song was really dedicated to myself, not to anyone else. It was a way of me trying to come to terms with saying goodbye to Old Self. 

I can't seem to embed/attach an audio file to blogpost, so unfortunately I can't show my cover version of this song. so the lyrics will just have to do.

Take Care of Yourself

It's time for us to part
Yeah, it's best for us to part
Oh, but I love you
Ooh, I love you

Take care of yourself
I'll miss you

The nights are long alone
I sit alone and moan
Oh, 'cause I love you
Ooh, I love you

Take care of yourself
I'll miss you

And no more tears to cry
I'm out of goodbyes

It's time for us to part
Although it breaks my heart
Oh, 'cause I love you
Ooh, I love you

Take care of yourself
Take care of yourself
Take care of yourself

I love you

When Pain Doesn't Stop Coming

 I was admitted to the ER yet again on September 10, 2023, after attempting to deal with excruciating migraines for 4 straight days. It was incidentally discovered that I have a blocked sinus and the ENT specialist isn't able to identify the cause of the blockage - whether it's liquid, soft tissue or a tumor. And there is a big possibility that I may have to undergo surgery to diagnose the issue and treat it at the same time.

Truth be told, I shelved this discussion aside as it was just too much to deal with at that point in time. And to some extent, i'm still keeping this issue at an arm's length. I'm just so exhausted, and my migraines have not really left me as I'm still experiencing some residual migraine effects - fatigue, brain fog and eye pain. 

I felt rather defeated on Monday, when I went for my follow-up with the neuromedical team at HUKM. It seemed as though I was just another case presented in front of the doctor. There was little consideration to alleviate my struggle with pain, with the end suggestion being that I just go to the ER whenever my migraine strikes - that would just mean that I would be at the ER very often. 

Also, my request to be placed on welfare (OKU) was rejected by the specialist... due to my age. Even though I had explained that I am unable to work full-time and its a daily struggle to live "normally", the comment was that I am still young and should be able to find ways to support myself. 

That triggered my insecurities that I've been trying to work through - I would want nothing more than to be able to work as my peers do, but i'm limited due to my illness. The flippant remark about my age and the perceived ability to work more was deeply hurtful to me. Even having to acknowledge that I will require welfare assistance has been difficult. 

Sometimes, I just wish I could have a break from this. But I guess that's not realistic since chronic illness doesn't provide holidays from it. 

Triggers

 Breathlessness has been my enemy the past few months. Began in November 2022 and its just been present ever since. I feel insecure without my ventolin inhaler. Rightly so, as I started having coughing fits once out of the blue when my wheezing became a lot more intense and I didn't have the inhaler with me. 

My muscles and joints have been feeling weak and sore as well. Again, just living with pain constantly, though I try to not show the discomfort unless it's unbearable and I can't hide it anymore.

I got rather triggered last week when a friend responded that I "didn't look it", when I told her that my health has been sucky as usual but life goes on - which is true. It felt dismissive and invalidating. To which I just replied that I don't take pictures of me writhing in pain nor when I use my inhaler, and that my pain/discomfort tolerance is high. 

and it hit me - Why did I feel like I had to prove that I'm telling the truth? Do people expect to see evidence of me in pain (i.e. look like death)? I guess that's just people's preconceived notions of how illness should look like. 

For myself, it's recognizing my irritance but not letting me boil over. Giving myself time to feel frustrated but taking care not to hold on to it.  

Dealing with Decline

 I've noticed that my word recall and memory has been on a decline. My mind literally goes blank on a daily basis as I struggle to form sentences or find words, even more so when I am tired. During those times, my words will be slurred as well. It is more apparent when I am engaging verbal conversations as I will have to think on the spot. My more familiar doctors and friends have highlighted that they've recognized this occurence - the fragmented and choppy thoughts, coupled with my need to take deeper breaths while I speak due to my asthma flare-ups.

It would be a lie if I say this doesn't worry me. My work as a therapist relies on my ability to communicate with others, and that would involve verbal interactions. I require a wide range of vocabulary to aid with the therapeutic process, and hence, I need to multitask. This is something I struggle to do now. Multitasking. My brain has difficulty juggling different things at the same time. Even with one task, it's a battle. 

It saddens me but I have to find ways to compensate for this deterioration while grieving for yet another noticeable loss I'm experiencing. I've developed a habit of talking to myself, giving me space to feel my emotions but also to then consider what can I do moving on. It helps so that I do not get stuck in the (overwhelming) negativity, and I attempt to identify solutions. 

One of my biggest lessons is to be kind to myself and be compassionate towards me. I know how hard I can be on myself. This helps me from spiralling. 

Medical Alert ID (continued)

 I'm glad to share that I have managed to purchase a medical ID after months of searching. I realize that there is a rather poor awareness when it comes to health management in Malaysia. A medical ID tag seems rather unheard of whenever I tried exploring ways to get it made. And my bestfriend wondered whether our local paramedics would recognize the medical ID and what the terms stand for if I were to wear it. I'm choosing to give them the benefit of the doubt that they will. After all, I can only do my part to provide the info needed for them to treat me if I were incapacitated. 

That said, it's important to have a medical ID with us, especially if we are susceptible to symptoms that could cause us to not be able to communicate. I've finally found a company that does a pretty good job. In fact, I was quite impressed because it only took two days for my customized bracelet to be delivered to me. I had made my order on Monday and received it on Wednesday. So if you're interested, feel free to check this website out: http://www.lifeline-id.com/

This is NOT a sponsored message. I'm just hoping to provide a resource in case you are considering a medical ID. So far, Lazada's offerings have not been acceptable.