Learning Acceptance bit by bit

As the title suggests, I've been working through my frustration and issues having to live with Moyamoya. I had a long day of activity yesterday, and I ended up crashing. What I realized was that instead of getting angry and punishing myself mentally for yet another severe migraine and chest pain episode, I had told myself that I pushed myself a bit too far and need to be more careful.

I think its been quite a journey for me to really accept my limitations. I know I wrote a post some time back about accepting who I am now but to be honest, it was a HUGE struggle. I struggled with staying positive, showing a brave face and expecting me to function WAY over my ability/energy level. Needless to say that sent me down a downward spiral.

It's only after accepting that there will be differences in my life and that is OK to grieve about losing my old self and having to rediscover my new self that helped me engage in more realistic behaviors. Do I still feel incompetent, like I need to prove myself? Yeah, sometimes I still do. But i'm trying to be more gracious to myself too. To tell myself that life isn't easy, it sucks, but that's where I am right now.

Something I've been learning is also to identify what my values are and what is important to me. I've had to acknowledge that I can no longer adopt a child (something that I've always dreamt of doing as an adult), nor can I work full-time. I've grieved over the fact that there are some ambitions that will go unfulfilled due to my current state. But in the midst of finding myself again, I've found new pathways as well. Things I never thought I would do but opportunities are revealing itself to me. I still value connection and doing good for the community, so instead of doing what I used to do, I now connect with people who may be struggling with illness, and I still try to advocate for people with special needs through the talks that I conduct.

My life though exhausting and discouraging at times, I find not so bleak anymore. Making meaning after struggling through my illness has helped me be more focused and hopeful. I just hope that in your journey, you too can give yourself space to wrestle with your struggle and to find meaning again.

Journey of Acceptance

I've been trying to be active again and my schedule has been rather packed. End result - body isn't taking well to the strain and my immune system suffered. So I've been ill for more than a week even after finishing a course of medicine.

I had a conversation with a friend last week - I realized that it's been 3 years since my diagnosis but the weird thing is... the feeling of knowing I have a critical illness is still surreal. I live it EVERY DAY and yet... just acknowledging it is strange. Is it even true? Knowing that this disease/condition will stick with me for the rest of my life... is surreal.

This realization hit me that acceptance of my condition is a daily and conscious effort. I have been pushing myself too hard the past few weeks as I've been feeling slightly better. But because of me over-straining myself, my migraines are back with a vengeance and I feel weak. It's a topsy-turvy relationship I have with myself. Looks like I am still struggling with finding a balance between rest and work. I have to remind myself daily about my limits but I tend to fail miserably as I will just push myself to get through the day.

I do realize I'm not as angry with myself as I used to be whenever I made the mistake of pushing myself too hard. I am aware of my weakness - the need to achieve, to contribute. I'm trying to be more compassionate towards myself. But I think I also need to set better limits for myself and be OK with not doing as much as I want to.

Sigh. It's still a rollercoaster ride. But I'm thankful I have friends who would remind me to slow down.

Grief

I tried to read a chapter of a psych textbook last week. And I failed miserably. I realize one of the reasons why it was also so difficult was because of the anxiety that was weighing me down. Even before reading that chapter, I was a bundle of nerves because I am all too aware that I have difficulty processing technical/deep information since my surgeries.

To say I was frustrated with myself (or New Me - in reference to my previous post), is an understatement. I was grieving. To the point that when I wanted to share my struggle with my team of colleagues... I ended up breaking down. I remembered thinking, "how much longer am I going to grief?" Last week, I really didn't know the answer. Honestly, I still don't... but I have a sneaking suspicion that maybe this grief will never actually leave me for good but maybe the effect on me will hopefully, gradually subside.

But I really have to thank God for amazing team mates (all of whom are mental health professionals) who gave me the space to express my sadness... to grieve, without judging me... without mollycoddling me. In fact, they normalized my experience. One even helped me reflect that I am actually really, REALLY hard on myself. (I know this... but I tend to forget). It's so easy to push myself and expect more from myself... but if I were to have switched roles with anyone else, I wouldn't be pushing them as hard as I am to myself.
Another thanked me for showing courage by being vulnerable. Sounds oxymoronic, but I do understand her point although it's hard for me to admit it. I grew up learning that crying was not a good thing and that it showed weakness. It's quite a paradigm shift to think that expressing such personal emotions that leaves me so vulnerable is actually a strength... and not a weakness.

I'm sorry, New Me. I really am still learning to adapt to you. I do miss Old Self still. But I'm trying. I think this grief will stick with me for some time. But I do realize that I'm learning to be more open to allowing myself to grieve. Maybe I can grieve alongside New Me. I don't need to isolate myself and feel all alone in this. Maybe it's not either/or. Maybe I'm in between. in transition.

I'm grieving... but it's OK. I can't put a time limit to grief as it would just make me feel irritated. I just need time. as much time as I need. Please be patient with me, New Me...

A Tale of Old Self and New Me

It's been about three years since I received the news that I have a disease called Moyamoya Disease - a diagnosis that drastically changed my life. I wish I was exaggerating, but no... this condition has really thrown me into a loop and made me struggle with things that I had previously taken for granted (i.e. the ability to multitask, to work full time, to read deep/technical books and be able to process the information, etc).

Does it get easier as time passes? To be honest, I'm still adapting. I'm still learning to accept the way things are now. I think I struggle a lot because I really LIKED my Old Self. I felt strong, secure, confident, talented and able. Old Self was an identity I was familiar and comfortable with. All that crumbled when I found myself no longer able to do what I loved doing. It may seem weird, but I felt betrayed by Old Self. Why did Old Self leave me? Why did it have to happen this way? There were so many things I wanted to do. There was so much I had to offer. Personally, I don't think I'm a selfish person. I've always wanted to contribute to society with my talents and my abilities. But E.V.E.R.Y effort I made now was pain-staking. Just trying to stay alert the whole day to engage in activities became a battle I had to fight. Most days, it felt like I had to whip out the white flag and admit defeat. I had to wrestle with the "New Me", challenge her boundaries and push her to be more like Old Self. Believe me, I'm naturally hard on myself. So I'd be miserable with New Me - forcing her to buck up and to perform better. And when New Me was miserable, I was miserable. Because I AM New Me! The problem was... there were times Old Self may show glimpses of herself which made me think that hey, maybe I can coerce her to stay and chain her so she would never leave. But deep down, I had that sinking feeling that this was no longer a conducive environment for Old Self to live in.

And then I knew (I will admit that till now there are times I may be in denial of this).

I have to let Old Self go...

I'm terrible at saying goodbyes. One, I'm a sentimental person. Two, well... I knew Old Self a whole lot better than this New Me. And I do struggle with the fear of the unknown, so I don't really like sitting with uncertainty. So to be honest, I haven't actually said my proper goodbyes.

It's been three years. I'm still getting acquainted to New Me - I've cried over New Me's "inadequacies", congratulated New Me's triumphs in the little things, bargained with New Me over the ability to engage in certain activities, etc.

New Me is my frenemy.

I'm beginning to accept her but sometimes I just don't understand her all that well. And that... scares me. But what I do know is that she is here to stay and I need to learn to live with her. I realize that fighting her continuously would just make me furious and uncontented. I also realized that I was so adamant in pointing out New Me's shortcomings and faults, that at times I failed to acknowledge the blessings she could bring to the table. Sometimes, I noticed those blessings and how it encouraged others, but it was easier to forget or dismiss them because I just wanted Old Self back. It was easier to reject New Me because I just didn't like what she represented. Sometimes, people assumed I was less capable because of my affiliation to New Me. Sometimes, people stopped calling/inviting me to participate in certain things because New Me is my constant companion. Sometimes, I'm excluded from discussions or conversations maybe because they felt that New Me is taking up all my time. Sometimes, people would tell me to buck up and break up with New Me, and just be with Old Self. I wish they knew how much I wanted that... but it's not possible because Old Self has left and I need to moved on. Always, these incidences and comments hurt even though I am aware that they come from good intentions.

New Me, I'm sorry for being so hard on you and not liking you very much. I know you wouldn't have wanted things to happen this way either. It's been a huge struggle for you as well. I'm sorry for denying your existence and pushing you away when all you wanted to do was adapt to this new situation. I like you more now though I am aware that I'm still quite impatient with you at times. I know God has put you in my life for a reason although I don't really know what it is. It's still going to be a challenging journey but I hope that as time goes on, I can fully accept and appreciate you for who you are and not who I want you to be. Please be patient with me...

adjusting back to community

Ironically, I write this with eyes feeling like they are being stabbed over and over again. But after taking a much needed nap, I do feel a bit better.

It's rather odd... I know I have been trying to make use of myself the past two years since my surgeries - I've given talks, done some disaster relief work... and yet, I know that I still feel inadequate. Clearly, my expectations of myself are quite ridiculous. Something I still have difficulty adjusting with.

But the interesting thing I've realized is.. since I decided to conduct a talk on supporting family/friends with chronic illness, it feels like I have more purpose in my life. It feels like the right thing to do. I've been struggling so long with my illness, it makes sense to share with others in hopes that I can speak up for others who may not have the words to explain how they want to be supported. Maybe it's the therapist part of me who is yearning to emerge again. I'm not sure. But I know preparing for this workshop hasn't been easy. Just having to concentrate for hours at a time gives me migraines. but I pray that the Lord will use me in this way to reach out to others.

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.