Disney + Worries

So… my family is planning a trip to Harry Potter World and Disney and I’m simultaneously excited yet super anxious.

The biggest hurdle is that my therapist suggested that I start using a wheelchair of some sort so that I can avoid becoming exhausted to the point of major discomfort and fatigue, and tense muscles.  I had never considered using a wheelchair before, and the hypocrisy that is me, is that when I see other people in wheelchairs, I don’t think much of it, yet when I think of ME in it, I am riddled with a million feelings: perhaps

Shame, that I have to submit to a wheelchair and can’t make it on my own two legs,

Guilt, that I don’t really deserve to use a wheelchair and am a “fake” illness person (doesn’t help that tons of other people have doubted my illness over the years), and that my family will have an extra task to do in pushing me around,

Embarrassment when I have another extra thing to make me feel different, and perhaps

Relief and Hope too, that this might be much better of an arrangement for me energy-wise, if I could only wrap my head around accepting it.  The truth is, my whole life I’d lived in the mindset that my lungs were going to eventually heal and become “normal” when I reached adulthood aka college, yet I was slammed with the ugly reality when I switched over to an adult doctor, who told me I should be prepared for lung transplant evaluation instead.

My whole life, I’d been competing with people functioning at full capacity, when it was literally not possible.  And even after the sad realization, I could not bear to face the reality that it was, and continued to live in doubt and silence.

After a few years of therapy now, which I started on and off 3 years ago, I think I’m becoming better at shifting my perspective to a more positive one, but it’s still a really long and bumpy road.  I have to expect that most healthy people, especially ones at my age, will simply not get it, or even have the patience to try to get it, because they have their ableist privilege, and all I can do is control my own mentality.

The list could go on forever for all the rough moments in my life when other misguided people mistreated me and misunderstood me, believing I was taking advantage, or lying, “playing a victim”, or one thing or another, just because there was no visible evidence in their eyes.  And it caused me to continue to doubt my own capabilities and limits as well for a long time.  But now I realize that you do not let other people’s ignorance hurt your own knowledge and perseverance. You are not any less just because you were given less spoons.

I have to learn to forgive people and move on, because for a long time honestly, I’ve let myself get caught up in the unfairness of it all, and the rudeness of others causing me so much hurt and pain.  No more.

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August 12, 2017, Sat. @ 3.54am (technically 13)

#chroniclesofthechronic

Pt. 1 Overview

I feel like life keeps being really tough, and not just tough in the usual senses, but extra tough even when I’m just doing mundane, ordinary things. When people ask me what I did all week, sometimes I have to catch myself feeling sorry for myself, because I realize that my level of achievements can be considered small in comparison to others who are able-bodied and fast paced.  I can’t say anything exciting, but rather, I have to remind myself to be proud that each day, I meticulously planned out how to live in small increments of productivity and function, saving up energy to check off goals like laundry, cooking, remembering to drink water, and that I dragged myself out of bed and did these things, even though they were hard and do not match up to my level of ambition and what I would want to consider a “true” accomplishment.

My insomnia has worsened recently but I know why.  Hearing again that I need to see a lung transplant specialist wasn’t easy, but for some reason, this time a switch flicked in my head and I decided it was time to fully wrap my head around accepting doing the evaluations, no matter how strenuous that ordeal was going to be.  I constantly find myself wavering between moments of calmness and acceptance, almost contentedness, yet other times like last night, I lay awake in my friend’s guest bedroom, thoughts flying everywhere and causing an increasing panic in my head until I succumbed to the pill to aid me in sleep.


Pt. 2 Log In of the Day

What I originally intended to write about though, was happiness.  I had a rough week (what else is new, the usual levels are rough, rougher, and roughest), but today was a good day.  A solid, good day.

I had been worried that today would be bad, as usual. Yet it ended up being one of the best days I’ve had in awhile.  Friday night, we prepped hard for a dessert competition at fellowship, and even though we placed third, I felt pretty proud and we did bond with our team by working hard to produce a beautiful panna cotta.  And today, we went to dim sum and it was a lovely meal with a large group of people.  Then, I migrated back up north for another fellowship and met some people, and finally migrated back down where we spent a great night learning how to make fresh pasta and EATING it!!!  Seriously, the best pasta I’ve ever had… it was what I always imagined fresh pasta to taste.  Delicious, right amount of bite and sauce.  It was fun, and we had some sangria as well.  We also watched a bit of Master of None and the rest played card games.


Pt. 3 Insecurities on my Physical Capabilities, but also- Body Appearance

A crazy thing that happened recently is my weight gain.  I weighed around 92-95 lbs for the longest time, probably from all of college until now.  I weighed myself a few days ago, and each time it was the heaviest I’d ever been… first I hit past 100 and couldn’t believe my eyes… then I hit 103 within two weeks. I was getting a bit concerned… because even though I know I’m not concerned “fat”, I’m also now looking very “skinny fat” where the rest of my limbs are super bony, yet my stomach and cheeks are protruding…. I even have a muffintop.  Then I saw a few candid pictures of myself, and I was kind of horrified at my shape. First of all, my stomach protruded quite a bit around my lower abdomen area, but my legs were still super slim and lacking muscle… it reminded me of the Titan in “Attack on Titan” that was round and fat but stuck on a house with its long, super twig like legs.  I also have a TERRIBLE posture, and I guess from my tense muscles and all the stress of anxiety + breathing struggles, my shoulders are a bit risen up and hunched over, especially from the right side.  It really looked very unattractive to me.

I know that steroids do deposit fat differently for your body, and I guess I’d never been on it as much as I was in the past year, and particularly now that I’ve been on it for almost two weeks now to see if I can improve my lung function.  While I was never super concerned with my body appearance prior, I was never a super fan of my body either and just thought the major complaint was that I was too bony all over, especially my bony knees and lack of butt.  But now in addition, my lumpy waist and hunched shoulders just all in all are a mild devastation to me, psychologically.  I don’t think I’ve ever felt actual unattractiveness like this, even when I’m just in bum clothes and glasses and hair that hasn’t been washed in over a week…

Steps to take to stay determined:

  1.  keep working out and doing planks + gym as I can at least 2 times a week
    1. particularly, strengthen back and chest workouts, and legs… and arms… ok basically everything
  2. try to lessen sugar intake and eat more vegetables, fruit, and protein (find more delicious recipes + buy healthy foods)
  3. keep being productive in writing music for grad school
    1. sign up for GREs/ plan a date
    2. shoot emails to professors sometime in late September asking for recs
    3. keep doing research on other grad school programs
    4. follow up with Monica on online graphic design program
  4. do things to make yourself happy, like walk with Meg around neighborhood, hang out with friends
  5. TREAT YOSELF –>  bubble clay mask, hot  bath, hair treatment at salon, massage, leg wax/ exfoliation, clean make up
  6. Express yourself –>  continue improvising on piano, learning Chopin piece, also Photoshop + Illustrator (empowerment of chronically ill women <superhero with treatment mask>  <cute new kinds of hospital wear…>
  7. Google Analytics / Hubspot /Lynda Academy for digital marketing, etc.

 

 

 

A Small Achievement

Letting go of pride.  A lot of self-care and confidence is reframing how you feel about yourself, and letting go of pride enough to realize that you can still retain your dignity even when you feel you’ve lost it.  As much as I tell others that sharing and revealing a part of your soul makes you feel like you’re vulnerable like an open,  bleeding wound to others, it’s part of what makes you human- the first part is letting others know what you’re going through so that they can help you.  The second part is that despite our worst fears that we look silly or weak, I’d say 95% of the time, you just simply earn more respect for speaking up and being open in the first place.. it increases trust, and you are a leader in paving the way for others to see your imperfectness, so that they may allow themselves to become vulnerable too and share.

Yesterday, at girl’s group, I took out my inhaler and used it, then joked about gargling.  All of them watched me, and asked me questions about it, especially the ones working in hospitals.  I was feeling confident, or rather, content, and somehow that made it feel safe and okay to talk about my inhaler and not make me feel like I was isolating or making myself look like a sick person.  And it felt good.

Ironically, letting go of my pride made me feel proud.