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!!!!
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. 🙂
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.
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 🙂
Stay tuned for part 2 wherein I will share some travel tips for chronic illnesses sufferers!
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 🙂
- 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 :
- Physical or emotional trauma
- 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
- 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.
- 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!
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
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.
It’s a new term at my university. I am currently adjusting to the workload and /mountain/ of requirements. In fact, for one of my subjects, I am required to record all of my reflections on an e-journal. As such, I created a new wordpress dedicated on theories of learning and education.
For my first post, one of the prompts given is the kind of teacher I envision to be after graduating my course. In summary, I wrote how it is not “possible” for me to be a “teacher” in the first place.
Want to know my explanation? Visit my journal at this site: kabibengdagatlearns.wordpress.com 🙂
Last week was pretty hectic because I organized, styled, shot, and post-processed my first prenup shoot for my cousin and his bride. As expected, I had to rest for days after the shooting day (Hello, Fibro flare!) but every effort and energy was worth it. Seeing how my family loved the photos made it even more precious.
The chosen theme by my future cousin-in-law was summer garden-inspired. She sent me pegs from Pinterest and let me translate the theme in their own context. Luckily, she liked my ideas. Major thanks for her trust and belief!
See the whole set on their website here.
Korean dramas (aka Kdrama) have made my life colorful since 2008 (Hello, BOF!) Hence, you’ll see some posts and reviews on old & currently-airing dramas here.
Anyway, I’m too happy for words today because one of my main Kdrama ships are sailing! Nam Joo Hyuk and Lee Sung Kyung of ‘Weightlifting Fairy Kim Bok Joo’ are reportedly dating. *heart eyes emoji* Behold, my quick art for this couple!!! ❤