Facing the issues head on

I've been feeling rather depressed of late. Now that I've "come out of hiding" and am wishing to contribute and be part of a community once again, I find myself staring straight at my limitations... or what people may perceive my limitations are.

It's an extremely vulnerable and uncomfortable position for me to be in. Don't know if i'm being hypersensitive, but I notice changes in how people relate or interact with me. One thing I do notice is the awkwardness some people have with me - not knowing what to say or do. I don't blame them for that because sometimes I don't know how to manage myself. One thing that upsets me is that I feel disempowered. I realize it's my fault as well that I'm not assertive. 

A very wise friend told me that for change to happen... I needed to do three things...

1. be aware of my feelings (check)

2. be aware how my feelings affect me (check)

3. be able to express to people my needs (this.. I have difficulty doing) 

I've always been rather a pushover. Saying No has been a tough journey for me though I'm slowly making some progress in being aware of my limitations.. But telling people what I need is a tremendous struggle. Sometimes I think it's super hard because I feel unworthy of help. That me just asking for help would be a source of burden to others. Would I think this if someone asked for help? Definitely not. But somehow, I find myself believing that I am insignificant. 

Passivity seems to be overtaking my functioning. Maybe it's my depression setting back in again. I just feel sucky and helpless. Maybe I need to do some motivational interviewing on myself. sigh.

Not a lot of spoons

After nearly a year of sabbatical off work, I went for a meeting/interview as I was keen to return to work albeit part-time. It went alright but once I revealed that I have a rare, incurable disease I could sense the tone of the meeting changed. I could tell they were concerned about how I could function then. One person said, "oh, you don't look sick. I wouldn't have known if you didn't say..." Yup, I hear that all the time.

Then came the question of whether I could be able to handle working. I gave them honest answers about having to be fully aware of my own needs, and not going beyond my energy level. Then came the request for a medical report from my doctor. Don't get me wrong, I totally understand why they feel the need to request for it. But it still sucks on my part - realizing that I will always have this diagnosis bearing down on my shoulders, and options may become more limited because I am unable to function like a "normal/healthy" person.

This made me remember the article on Spoon Theory. I have limited "spoons". Decisions I have to make early on to help me survive the day. If I use too many, I suffer the next day or so. With limited spoons, come limited options as well. Some people may still want me to function as per normal, but for some... they just stop asking me to do stuff, or they assume that I can't do certain things anymore.

To be honest, it hurts. I used to be a workaholic (I don't condone it, but being able to contribute to meaningful projects gave me a sense of purpose). But now, it feels like people are worried about asking me to be involved in things because of my health. True, I can't function like before... but it would be nice to be included sometimes. Or just having a conversation of how I can contribute... the little that I can... instead of stopping altogether.

I guess this is the reality I have to face... It's hard but I need to learn to accept that I will have to count spoons, and that people will naturally count my spoons for me. I know that people have the best of intentions when they do that... but it leaves me out of the equation to make decisions for myself.

What irks me too is when people think I use the Spoon Theory as an excuse to not do anything that may seem more tiresome. Sometimes I get comments such as, "but you don't seem to have a problem when you're having fun". It gives me the feeling that they expect to see me looking miserable 24/7. Yes, I do still get to have fun, I still get to enjoy happy moments, and meaningful conversations. But people don't see what happens after, yes, even after "good times" - the migraine/nausea setting in, me having to collapse in bed in order for my brain to rest and reset, struggling to function the next few days because I chose to push myself harder than I ought to, because I wanted to have longer good moments. I am aware that these comments sometimes get to me - and they make me believe that maybe I shouldn't be having such a good time. It's crazy, isn't it?

Sigh.. its tough counting spoons... and I wonder when I'll ever get used to this. But I have to remind myself that this is the reality for me.

a mixture of happiness and sadness

I apologize for not posting anything for quite a while. Things have been happening and I've just been going with the flow while trying to adapt to changes. Quite a bit to take in but hanging in there.

As I write this, I am experienced mixed emotions. So maybe I'll separate my sharing to good news and challenging news.

Good news

1. Good news is, the myochardial ischemia that I was diagnosed with is currently considered not as bad. I do however have spasms that occur in my heart whenever I overextend my capabilities. So i'm still not out of the weeds, but its better than having to deal with a permanent blocked heart artery.

2. As of today, I've managed to perform 5 gigs (1 wedding and 4 in restaurants). I've another wedding gig coming in Dec. Who would have thought that I'll get paid playing musical instruments. But again, I know it's a door opened by God. I probably may not have considered doing this if I was busy with my clinical work... but since now I have difficulty practising as a clinician. Hey, new avenue to earn money, and also it's a great self-care exercise for me too.

3. I'm heading to Nepal to conduct training. Yup, I'm heading back to Nepal... the place where I suffered a minor stroke previously. But lesson learned - i'm not going to kill myself working. I know I need to be more mindful about giving myself rest. I know it will be pretty challenging. But yeah.. learning to adapt to my new self that can't continue working for more than 2-3 hours at a time. it sucks, but that's reality. Just glad I am still given these opportunities to serve though.

Now... to the Bad News

1. you'd think that after 2 years of surgery, your family would understand how my pain would be like. and that when I'm hit by my migraines, it's not a gesture to attract attention. But unfortunately... my parents think that I "display" my pain in order for them to pity me. It's hurtful when these statements come out of my parents' mouth. I don't actually always complain whenever I'm in pain. In fact, when my parents are away, I leave out the details of my migraine attacks because I don't want them to worry. But the fact that they turn it around, and conclude that I am actually OK when they are not around (because I didn't tell them about my migraine episodes)... is really terrible. It pisses me, off to be frank. 

Dear families/caregivers... please know that we may still suffer pain from time to time. We don't tell you about it just to get your pity. we tell you because we hope you can be supportive. Sometimes we may be in pain and we don't tell you because we don't want you to worry. So don't just assume that we are ok and crying wolf when we do tell you what's going on.

anyway.. i know I'm ranting because I'm deeply hurt at the moment. But yeah.. please consider my words. It sucks when our brain feels like its going to explode. It doesn't help us when you say we display our pain to you because we want your pity.

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. 

~~~~~~~~~~

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?