Some Travel Advice (Japan Trip Part Two)

Hello, fellow earthlings! As promised, here is the part two of my Japan travel blog post. Let’s start with this vlog I released days ago:

(click this and come back here, plox)

And now for the tips:

  • Consult your doctors if you are fit to travel to your destination of choice. You need to check your stats and to know how to best manage your treatments while you are away.
  • Travel with someone who knows your medical history thoroughly. It’s better if he/she is your primary care.
  • Research your destination! See if they have the facilities and spaces that are suited with your needs.
  • Stock on all of your medical supplies! Make sure you have a ~little~ more than what you need.
  • As much as possible, travel as light as you can. (I know this is hard.)
  • Write your things-to-do on post-its, etc. We don’t want brain fog to strike us hard, right?
  • Have plans of action to medical scenarios that might happen. It’s better to be prepared at all times.
  • REST. REST. REST a lot days before your travel. You need your energy when you sight-see and experience the places!
  • HAVE FUN. Traveling is a privilege for us warriors. Once our health permits us, we gotta take advantage (with caution). 😉

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Brand New Step

One of my greatest fears ever since I got sick is my future prospects as a chronically ill /PWD person in this country. I’ve been wanting to talk about transcending chronic illnesses and working on something meaningful in life. But I didn’t know how. This is why it’s been taking me such a long time to write something here again.

Until I read about Claire Wineland, her clairity project and Claire space foundation. She’s been battling cystic fibrosis since childhood. Then, I discovered Jaquie Beckwith and her service dog, Harlow. Through her IG posts and vlogs, she’s been documenting how she lives daily with multiple illnesses. I wondered what makes them tick.

A eureka moment led me to believe that they are not only embracing their vulnerabilities but also keeping an open mind on gambling on life. As what one of my favorite researchers said, they have “character…the ability to dig down and find the strength when things are going against you.” They are working with their limits to go higher and to expand their boundaries. They connect with people; they are not doing this alone. I realized I’ve been taking risks half-baked because I was letting fear overwhelm me. When I created this blog, I had a vision of it primarily being a space where people can reclaim their own stories as I reclaim mine. However, I was letting fear hamper me on touching on some issues.

Where do we go from here? Now that I have a handle on my present reality, I will consciously and courageously throw my chips. No more mediocre commitment. I’ll share whatever I can about my journey and push to transcend awareness of multiple chronic illnesses into actions through 1)  writing, vlogging, and photographing to stop the stigma of chronically ill people NOT having a “life”; 2) stop the stigma against mental illnesses because hey, we are not what the common stereotypes depict; and 3) discussing the intersectionality of the issues the chronically ill face.

Please look forward to my future content here and at my youtube channel, Chelly Caritativo. I need your hands to make this happen! If there is any way we can collaborate, shoot me an email or simply message me here.

My FIRST youtube video will be out very soon! I’ll post the details asap. EXCITING!!!!

 

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P.S. The part two post of my Japan trip will be posted soon. I’m a woman of my word; sorry for the delay. Hospital admissions got in the way. 🙂

Japan Trip (Part 1)

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This trip should have happened back in October 2015. Unfortunately, I got hospitalized. The plan was pushed back and back because of my sister’s busy clerkship schedule (She’s a medical student!) and my unstable health.

Fortunately, this year, my mom started planning this trip again because I was gaining more ground on managing my symptoms and my sister was informed she’ll have a two-week vacation.

Fast track to the the first week of May. Everything was coming together – we had our visas granted, booked our tickets, and chose major places to visit. However, my health started to decline. Because my current mix of medicines then, I began to experience my second major fibromyalgia flare. My neck, back, hips, knees, and calves were burning almost everyday. I cannot walk beyond 15 mins nor I can stand for that long. My TMJ flared too. The stress of my heavy academic requirements amplified it.

As such, my parents and I consulted my psychiatrist and rheumatologist. They told us that there must be an improvement every week before they grant me a travel clearance. Thus they gave a new mix of medicines, upping 8 pills to 11 on a moderately bad day.

Thankfully, the pain lessened. And so, they gave me clearance provided that I will take a wheelchair in the airports, the amusement parks and other tourist spots. After all, I was still in flare albeit at the *hopefully* tail end.

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The first three days had me feeling okay for most of the time. The streets, transportation, buildings, and parks of Tokyo were a thousand times more PWD-friendly than my own home city in the Philippines.  This definitely lessened my stress and worries. It was easy asking for wheelchair assistance because the people were very accommodating. Shoutout to Disneyland for having priority seats during shows and views during parades! Visit my photography portfolio here for more photos 🙂

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Stay tuned for part 2 wherein I will share some travel tips for chronic illnesses sufferers!

 

 

Fibromyalgia Awareness Day!

Fibromyalgia

May 12 is Fibromyalgia Awareness Day! Not a lot of people know about it, and there are a few research studies on it compared to other conditions. I haven’t encountered any NGO or organization that specifically spreads information about it here in the Philippines. As such, in the spirit of  ~celebration~ and advocacy, I will list down some facts facts + my coping practices 🙂

Fibromyalgia Fast-Facts 

  • It is a chronic, non-progressive disorder that manifests through musculoskeletal pain accompanied by fatigue, memory, sleep, and mood issues
  • There are a lot of co-morbid disorders that may come along with it including irritable bowel syndrome, depression, TMJ, and migraine
  • Causes are not exactly known although researchers have pointed out these factors :
    • Genetics
    • Physical or emotional trauma
    • Infections
  • Symptoms may vary from patient to patient. These include:
    • Widespread pain
    • Hyperalgesia or extreme sensitivity to pain
    • Allodynia or triggering of pain response to usually/commonly not a painful stimuli
    • Stiffness
    • Fatigue
    • Fibro-fog or memory issues
    • Irritable bowel syndrome
  • Currently, there is no cure for it. What doctors primarily do is to manage the symptoms for patients to live life as less painful as possible.
  • In the Philippines, it is also referred to as soft-tissue rheumatism.

Self-Care Practices

  • Avoid any triggers. I know fibro flares can sometimes spark without reason (hardyharhar, the human body is a mystery) but I notice that when I expose myself to some things, my chances of having flares go higher. And so, if I have the ability to avoid them altogether, I do.
  • Always have to-do lists. My memory has been especially affected by the cognitive issues fibromyalgia causes. To manage this, I learned to write to-do lists everyday so the chances of forgetting/not getting a thing done is slimmer.
  • Rest, rest, rest after a hectic day…or half-day. My family and friends know that I cannot go out and do a lot of activities like normal, healthy people can. So, after a hectic day, they let me retreat to my room and relax my aching body.
  • EXERCISE. My physiatrist prescribed a list of exercises I can do to combat the stiffness and aching of my muscles. I cycle four and do some stretching four to five times a week.
  • Use walking device when needed. I used to feel bad about having a cane and a walker but now, I understand that I need them when my body feels too weak to walk. No more self-pity.

Hope this post helps!


Resources:

Mayo Clinic Staff. (2017, May 02). Fibromyalgia. Retrieved May 11, 2017, from http://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/dxc-20317796

NHS. (n.d.). Fibromyalgia – Symptoms. Retrieved May 11, 2017, from http://www.nhs.uk/Conditions/Fibromyalgia/Pages/Symptoms.aspx

SY, D. G. (n.d.). Fibromyalgia (Soft-tissue rheumatism). Retrieved May 11, 2017, from http://www.pchrd.dost.gov.ph/index.php/news/library-health-news/1366-fibromyalgia-soft-tissue-rheumatism

On Death and Will to Live

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Someone asked me days ago if I am afraid of dying and where my will to live comes from. Here’s my answer:

When I was 11, I told a close friend what I want for my funeral: no black and white clothes, some flowers, cremation, and to be buried under a tree. To my young self, my demise is a celebration.

I still hold the same wishes and belief today.

There is a different kind of peace and acceptance when I finally acknowledged that I am more vulnerable to death than others. After being on the brink for the nth time last January, I have conditioned myself to end everyday in a good way. I never know when my illnesses will strike me hardest.

I guess this is where part of my ‘strength’ comes from , the knowing that everything is finite and every morning I wake up is some kind of miracle itself. I’d like to think it made me see life in a new light that not even my bipolar disorder can affect. Since death is inevitable (for everyone, actually. It is the great equalizer of men.), I decided to live as purposefully as possible without taking it too seriously.

Until the last day of the some kind of miracle happens, I’ll keep on loving and moving. I only have the present. When God decides it is time, I will accept wholeheartedly. It has been a wonderful life.

Suffering and Faith

(Full disclosure: I am a liberal Roman Catholic who believes that science and faith complement each other. I love Jesuits. My God does not discriminate.)

“How can you still believe in Him when you’re in pain all the time? After all that you’ve been through? Did you ever question God?”

I did. In fact, I had a period when I almost believed He abandoned me. Why did He let me be as sick as this? Why wasn’t He “healing” me? Why wasn’t He here when I am most in pain?

Subscribing to the principle of a faith seeking justice, I asked three priests on why God allows people to suffer. First was my confessor from sixth grade to senior year of high school, who knew a lot of my troubles including my first heartbreak. He replied that God is not a God of bad things.

Second was my college sophomore year confessor. I asked Him if God makes people suffer. He reminded me of what I learned from my Theology 103 class. God is not a God of vengeance. God is a God of mercy and compassion.

Lastly, I asked my recent confessor who I saw was slightly taken aback when I posted my question. He told me that God does not favor pain nor does He leave people who are in pain.

For awhile, I was lost. No book nor explanation comforted me.  It made me rethink of the reasons why I believed in a higher being and why I chose to believe in my God.

Then I remembered that in order to have faith, one needs to leap from reason. Scrambling my reasons for leaping, I remembered the picture showing the interaction between a beggar and a well-clothed man along a pedestrian bridge. In the beggar’s eyes, He saw Jesus approaching him. In the man’s point of view, he saw Jesus sitting and staring at him.

It was this memory of the picture that resurfaced my realization years ago: I leapt because I see Him in every person I meet and in every beauty. Whenever I see people choosing their humanity in every situation, I see Him.

Thus, when I looked back and reflected, I saw that I failed to recognize Him in my nurses, my doctors, my loved ones, my learners, my colleagues, and strangers who had been with me since the beginning. He never left me alone, not for a second. He healed me through the nights my boyfriend answered my midnight calls of anguish, every moment my parents held me as I battle an attack, and everytime someone makes an effort to be with me and make me happy. He had loved me in ways I needed to be loved.

I still don’t know why sufferings exist. I hope I’ll have an answer someday. But now, my conclusion is this: my God loves perfectly and the love that I know is nowhere near close.

On Bullying and Depression

Note: I wrote this weeks ago and planned to publish this on my site at the end of the month. But I’m having terrible nightmares and post-traumatic flashbacks since last week. I have a feeling I’ve been triggered by the posts about Thirteen Reasons Why. Thus, I’ll be detoxifying from any social media save for FB messenger, email, and my blog for…I don’t know. My health is my priority. Have a safe holy week and vacation, guys.


 

Bullying was the one topic I actively avoided. If I were to refer to it, I would use euphemisms and just brush past it. However, I learned in my history classes that dark periods must be acknowledged so they may never be repeated. (#NeverForget!) Plus, I got questions on how I discovered I have bipolar disorder, general anxiety disorder, and panic disorder.

Before you read my story, understand that my bullying experience was a HUGE RISK factor, and NOT the DIRECT CAUSE of my disorders. I do not blame anyone for what happened to me. I accept the fact that I am physiologically vulnerable to having them in the first place. My illnesses have biological causes.

Trigger warning as well. This may not be easy to swallow. Here we go:

I was bullied from fifth grade to second year high school. There were no words that can explain how I hated being called smart, intelligent, or a nerd. I hated that I love learning and studying. I hated that I like anime and books. I hated that my tastes in music are not mainstream. I hated that I am curvy. I hated a lot of things that I used to love.

I hated myself and no one knew. At age 11, I had my first attempt. I remember being a walking emotional wreck who hid inside the comfort room cubicles during lunch.

At age 12, I cried every after school dismissal. I remember congratulating myself for surviving another day. No one knew.

At age 13, I stayed in the corners of the class with my three close friends. Social outcasts stayed together. I had my second attempt; no one knew.

At age 14, I almost had my third attempt. My sister, bless her heart, stopped me.

At age 15 and 16, I filled my schedule with lots of extra curricular activities and advance classes. The busier, the better. The more I did, the more I was not forced to admit that I was having panic attacks and recurring nightmares. I thought they were normal. I thought I moved on.

Invalidating my pain for a long time, I realized, had difficult consequences. 2015, the tenth anniversary of my first attempt, saw me attempting three more times. Coupled with the stress from work and meeting a person I allowed to bully me, I…just drowned.

I felt hollow. I was empty. I thought there was nothing to look forward to. I didn’t move from my bed most days. I didn’t sleep. I didn’t eat right. I cried a lot. I cancelled plans with my friends. I isolated myself from my co-workers. I was disconnected with the world. I had no energy to keep up with life anymore.

My mom and my sister urged me to seek help before it was too late. Two days after my 21st birthday, I was confined for severe depression and severe suicidal tendencies/ideations. Months later, my psychiatrist formally diagnosed me with bipolar type 2 disorder and two anxiety disorders.

But I want to end this post in a positive note so these I can tell you:

It’s been seven months since my last suicide ideation.

It’s been eight months since deep depression hit me.

It’s been nine months since my last attempt.

There is no hatred or anger in me that is directed towards anyone anymore. I understand that there must be something they were going through too at that time. Bullying is a cycle and I want our cycle to end it with me. No more hurting.

I wish my school supported me more throughout my stay because I can’t seem to go back and visit. No matter how wonderful my senior year was, every bathroom stall and space under the stairs remind me of the girl who wished to die. I hope the system has changed and now have the capacity to help students who are facing bullying, depression, and suicidal thoughts among other mental illnesses.

Suffice to say, I am in a better place. I came to accept that I will always carry my experiences with me. It has taken me more than a decade and I am proud to be a work-in-progress. I am not a victim; I am surviving and thriving.