It's Moyamoya World Day

It's Moyamoya World day today... and I'm having a massive migraine while writing this.

I had a fight with my dad who seems to think that it's supportive to say, "why do you always have migraines" in an accusatory voice. I'm tired of having people tell me that it's my sleep patterns or my medications. whatever. Do people know how much pain I endure?

Anyway, I need to cut this short coz my head feels like exploding. Family support is so important when someone has critical illness. I realize some people can be so egotistical that they won't learn to be more supportive even when the person with illness is trying to communicate how she would like to be supported. to families out there, please listen to the person who is suffering. It means a lot to be heard.

another thing that is staring straight at my face is knowing that everyone is out there going on with their life. I'm happy for my friends, that they are  able to work and have a purpose... just that it makes me realize that I'm stuck in my room, tending what seems to feel like a ticking time bomb. and that's all i can do now.

loving with moyamoya can really suck.

Another diagnosis

My apologies as I've been rather quiet. I have been experiencing frequent migraines and other symptoms, hence I haven't been actively online. 

The most recent update from me is that I have received another diagnosis after a few months of testing. Due to my chest pains, I've been following up with a cardiologist and have undergoing some investigations. Well, they have found that I have Myocardial Ischemia - blockage in my heart artery.

Was I completely shocked with this diagnosis? To be honest, not really. I already had a sneaky suspicion something wasn't right with my heart - with all the severe chest pains, breathlessness and all. But was it still a blow to me? Yeah. Definitely. It took a lot from me not to cry when the cardiologist broke the news to me. I didn't want to be emotional as I wanted to be strong for my parents and to be able to discuss further treatment without breaking into sobs. 

Anyway, whatever is happening to my heart seems to be really similar to what is happening to my brain. The blockage isn't due to plaque or high cholesterol (my cholesterol levels are ok, by the way). It seems as though my artery is closing up on it's own. Sounds familiar? 

Due to the rarity of Moyamoya, it is hard to determine if there is a link between Moyamoya and caronary diseases. A medical journal from 2001 has not been able to conclude whether there is a definite link. A doctor friend of mine had encouraged me to write to the author of the journal, which I have just done so, and I hope he can enlighten me if there has been new findings.

Another hurdle to go through, but praying that God will sustain me. It really does feel like this will be a never-ending battle. Feeling rather drained.

I don't know if this is common among us with Moyamoya to also have a coronary disease, but if you're struggling with this, I hear you. I'm sorry that you're in this position as well. But I want you to know that we are in this together. 

If you're interested in reading the journal article that I mentioned earlier on. Here is the link:

MoyaMoya disease and Coronary Artery Disease

A constant struggle

It's been a while since I posted something here. I've been struggling with migraines nearly every day for some time. I've somewhat stopped working because I can't cope. Even engaging in activities of daily living doesn't come easy for me now. 

I easily get fatigued mentally. And for a lot of days, I just want to sleep. My body/brain just doesn't seem to have much energy and isn't so cooperative with me. Would I like to do more? Most certainly. But I have to ensure that I'm listening to my brain/body. I don't want to end up in the ER again. 

It's a constant struggle. Individually, as I have to keep reminding myself that I'm not how I used to be, and that I need to adapt to this "new" body/brain. What doesn't help are the expectations from others, especially my family. More often than not, it feels as though they hold me responsible for the pain I'm feeling.

"You didn't drink enough water"

"You sleep too much"

"You aren't taking your medicine"

So many assumptions of things I supposedly didn't do - hence why I'm in pain. It hurts... a lot... to hear this. It's as though it's my fault that I'm suffering. 

Adjusting to this hasn't been easy, not for myself, and not for my family. I give them the benefit of the doubt that it's hard for them too, and they feel helpless. But more often than not, their words are hurtful and damaging to me. It adds to the emotional anguish I'm already experiencing. Many times I'd end up crying in my room, feeling so misunderstood and frustrated. 

I've tried telling them to stop assuming things. But I guess old habits die hard. 

A PLEA  TO CAREGIVERS OF MOYAMOYA PATIENTS

Please understand that things aren't easy for us - even day to day activities tire us out a lot more normal. We may struggle more to do things that we used to be good at. For the most part, all we want is your supportive presence. Making assumptions may seem like you are trying to get to the bottom of the pain we're experiencing... but it can feel like you're blaming us for our pain. 

A lot of us are trying to make things better for ourselves. We know our body/brain. We have to make many adjustments and to take sufficient rest. So please don't consider yourself to be the "expert" of our body and functioning. If you're concerned, please ask how you may be of help and emphatize with the person. 

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Man.. even writing this post is making me feel exhausted... 

Yet another First

Another anniversary. Today marks a year since my 2nd brain surgery. Mixed feelings yet again as I'm thankful that I've survived another year, but yet realizing that I'm not out of this cycle. I still find myself going in and out of hospital... still unsure of my condition. 

Of late, I've been thinking very much of this chronic invisible illness that I have. Sometimes, I get tired of hearing, "you look great!" which indicates that they think I'm well.

(The above scenario happens more often than I would like, and it is frustrating).

The thing is, these comments will then build up and it affects me as I would feel the need to step up and meet people's expectations - to be "NORMAL" again. I know this is my own personal issue that I need to work on... but I am aware that my sense of worth is tied to me being able to contribute to society. Although I know that I am always loved by God and will be invaluable to Him no matter what. This thought that I need to be of use is always lingering in my mind. Especially when I compare how things were before my surgeries, and my current condition. 

But I was given this reminder today:

Don't feel guilty if you're too sick to do things. You have value simply because you are, even if you cannot be 'productive' in the way to which you were accustomed. Learn to cherish your very existence

I need to learn to accept and be comfortable with my current state. I need to focus on getting well and not killing myself with tasks in order to feel "worthy" of value. I'll be honest and say that it will take me some time to be convicted of this. And I know it will not happen overnight, but I guess it's a start?

Exhausted

I've been having rather severe migraines of late... Especially during Christmas and the days after. It has been difficult as I attempt to function "normally" but I realize there are many things I have to give up for my well-being.

Just yesterday, it dawned on me after talking to a friend of mine that I may have suffered a TIA (mini stroke) the day before. I expected that I had to fall unconscious for it to be considered a TIA. it isn't verified because I didn't go for a scan... But the symptoms were there - sudden disorientation, feeling faint, weakened limbs which caused me to fall to the floor, stuttering. It lasted for about a minute before I could pull myself back up.

It's a reminder that this disease brings a lot of uncertainty and pain. Not all Moyamoya patients may experience or feel this way, but I do see this "theme" in a few of us. There are days when I manage better, but sometimes... not so much. It's definitely draining. Even on days when I sleep more hours in a day than being awake, I feel like my body is exhausted and doesn't have the energy to move.

It's tough. I still haven't gotten used to this.

First Anniversary

Time has flown past and today marks the first year anniversary of my first brain surgery (wow, that was a mouthful).

I honestly don't know where time went as it felt as though it wasn't too long ago when I was wheeled into the operation theatre for my first bypass. Anyway, I thought that it would be good to do some reflection of how things have been and the lessons I'm still trying to learn from this experience.

Thanksgiving
First of all, I want to give thanks to God that He has brought me through this ordeal. I do still struggle with my health now, but the fact that I survived two brain surgeries is something I am grateful for. I'm also very thankful to my immediate family who had taken care of me while I was in the hospital and when I was recuperating from the surgery. I've definitely not forgotten my bestfriend, Jessie, who made daily visitations after work while I was still in my hospital bed. My aunt from Australia flew back to Malaysia to provide support to my family as well. I'm touched by the loving gestures, prayers and kind wishes that everyone had showered upon me - by colleagues, my church members and also friends from all over the world. It really did teach me that we don't live in isolation, and family/social support is so important when we are going through really difficult times.

Bravery
"You're so brave" was something that I heard a lot from people. To be honest, I'm not but I could never really explain why I felt that way. Yes, I went through two brain surgeries, but I did it because it was necessary. It wasn't until recently when I read Malcolm Gladwell's "David and Goliath" book, that helped put words to my perception that I haven't actually been brave about this experience.

“Courage is not something that you already have that makes you brave when the tough times start. Courage is what you earn when you’ve been through the tough times and you discover they aren’t so tough after all.” ~ Malcolm Gladwell.

If someone were to tell me 5 years ago that I would have to undergo brain surgeries, I'd probably freak out. But when it dawned on me last year that I needed the brain surgeries to survive, I went on with it. Courage emerged from being in that situation. I have to say that I disagree with the last part of this quote. Tough times are really tough. I wouldn't dismiss it as not being so tough after all. Undergoing two brain surgeries was difficult and it took a toll on me for some time. Sometimes it still does and I'm still adjusting to it. But was the experience impossible to go through? No.

What granted me courage really was my Christian faith, as it helped me seek refuge in my God. I had many Bible verses that were close to heart as I prepared for surgery. They were mostly from Psalms.
Psalms 53:3-4 "When I am afraid, I will trust in You. In God whose word I praise. In God I trust and am not afraid..."
Psalms 121

Empathy
This experience has helped me empathize and understand others who are going through a tough time due to diseases/illnesses. I have to say that I'm a lot more understanding with others than with myself as I am aware that I push myself hard to get better - which I have to emphasize is not healthy, as I'm not allowing my body sufficient rest it needs. Having to go through this challenging time helped me understand suffering and how resilience can emerge - bearing in mind that everyone suffers differently and will cope differently.

Acceptance
Having this rare disease and undergoing surgeries have led me to make changes in my lifestayle and to be aware of my limitations. I think one of the hardest lessons that I'm still trying to learn is to accept myself for who I am now.

To accept my limitations - that there may be things that I am unable to do right now (mostly adrenaline pumping activities/adventures which I love).
To accept that my brain finds it challenging to concentrate hard and to focus on certain things for long periods of time.
To accept that it takes longer for me to process complex information.
To accept that I need help and that I don't need to appear strong in front of others all the time. Acknowledging that I am weak and vulnerable is not easy for me.
To accept that I should take things slow and with that - being patient with myself and not push myself too hard. Believe it or not, sometimes I forget that my surgeries were actually major surgeries, and I have the tendency to set high expectations on myself to perform or be able to bounce back into action quickly.
To accept whenever I am feeling awful/depressed because of my severe migraines, chest pains and stroke-like symptoms that I still experience once a while.
To accept that there are days when I am unable to function well due to the pain I'm experiencing. 
To accept that I am grieving over these changes that I have to adapt to and to also allow myself to grieve. I realize that I feel guilty at times for grieving because (a) I'm still alive and (b) I didn't suffer a major stroke. At times, I feel that I don't deserve to grieve... but I do. I need to remind myself that it is OK.
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I don't know what is in store for me for the future but I am trying to live in the present now and also not be too preoccupied with my past. These are life lessons that I have kept in my heart and am hoping that I can share with others who may also be struggling with Moyamoya. What I can be sure of is that the learning never ends.

A gentle reminder

Of late, I have realized the possible effect of support groups to my emotional well-being. No doubt, it's always encouraging to hear great stories of people surviving and thriving amidst this disease, and I would feel all happy and hopeful that I too will be able to recover with few problems in the future.

However, not all stories from moyamoya patients are success stories, and I would find myself absorbing fear, anxiety and the sense of helplessness of those who have gone for numerous surgeries but yet are still struggling to live "normally".

Don't get me wrong, i think support groups are a great source of social support. But a friend of mine had very wisely reminded me that sharing our own life stories is good for people to be able to relate with you... but be aware that everyone has their own life experiences, whether good or bad, which is unique to them. We may be suffering from the same disease... but our experience of this disease may have similarities or may be vastly different. Hence, it is important that we do not take on or expect other people's life experiences to be exactly the same as ours. We may be on a similar journey to survive through this condition, but we may face different challenges or we may take different paths to dealing with it.

So a reminder to myself was that I do have my own journey with this disease. As much as I may be able to understand or relate with other Moyamoya survivors, it may not be healthy to OVER relate. It's good to feel that there is some emotional connection with fellow survivors, but to be careful not to be TOO emotionally attached to another person's journey.

Keeping healthy/good emotional boundaries is important so you're less likely to get sucked into having expectations of being completely well or feeling overwhelmed that one would suffer multiple strokes. We may end up getting ahead of ourselves, worrying about things that may or may not happen in the future.

Something I'm attempting to learn is to just be present with my own experiences, be it good or bad. Don't be too hard on yourself and just try to take things one step at a time. 

It's not easy and I admit that I still struggle with this from time to time.

I understand the temptation to want to cling on to a wonderful success story and then firmly believe that we will have the same success story, but I've come to realize that that same expectaition may sometimes contribute to me feeling frustrated and anxious. I realize that when I allow myself to recognize my own journey instead of focusing so much on other people's experiences, I would be more at peace and more accepting that this is how things are going and to allow my life experiences to take its course that is unique to me.