Lainey's Corner

This year I’m advocating for ME

I usually share information about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome on my IG stories, and occasionally on Facebook, so naturally I would have a couple of friends asking me how I am, what chronic fatigue is like, and telling me how inspiring it is to see me share such stuff. Recently I’ve been posting consistently about it, since the release of the documentary film Unrest which features the life and struggles of ME/CFS patient Jen Brea. She is such a huge inspiration to me and is probably the reason why I have let go of my hesitance to use a wheelchair.

Detailing my medical history is an arduous task so I shall not bore you with the long version of it. The short of it is that at the beginning of September 2011 I caught a really, really bad viral cough. It was probably the worst cough I’ve had, I was coughing slime. I know, disgusting. After that bout with cough, on October 3, 2011 I was rushed to the ER for what doctors believed was an anxiety attack. My heart raced, I could honestly say it went as high as 200 beats per minute. On October 5 I woke up with an extreme tiredness like I have never felt before. The simple act of brushing my teeth and raising my arms so I can put on a dress exhausted me. I have never seen my 89 year old grandma get that tired. I had difficulty of breathing, because even breathing made me so tired. I was scared that my breathing reflex would just suddenly stop. Shortness of breath and fatigue were my chief complaints and the reason I was confined twice that year. I did all the lab tests ordered by nine specialists, nothing definitive came about but I did incur about half a million pesos in hospital bills (Thank you Philcare!). During that confinement I was incidentally found to have something called Protein S Deficiency and a clot on my right subclavian vein, but there were already several collateral vessels so the doctors were positive that my blood flow was okay, and arterial blood gas findings turned out alright. A cardiologist put “Chronic Fatigue Syndrome” on a medical certificate I had to submit to the Human Resource department of the company I worked for at that time, but same doctor told me that it’s a wastebasket diagnosis. He wouldn’t be the last to tell me that.

Since 2011 I have seen more than 20 doctors in Makati Med, St. Luke’s, and other hospitals, begging them to help me find a cure for what I have. I could count on one hand the doctors who have shown me compassion despite not being able to provide answers. My family were disappointed and frustrated as well. Tears were present during consultations. The quality of my life suffered. I had to quit my job, which I loved by the way, and I didn’t work for a year and a half. My boyfriend of three years left me. Naturally because there were so many times when I felt like I was dying, anxiety descended upon me, followed by depression because I lost a job, a social life, and an able body. I eventually sought the help of a psychologist for that. I later on developed adult-onset allergies. I used to be able to eat shrimp and peanuts, not possible now. Although I am working hard this year to reverse that. But it’s like my body rebelled against me and it just didn’t want to cooperate. I even got shingles at age 31, so my immune system is really compromised.

The fatigue and other symptoms come and go, and during the times when I am able to function close to a normal human being, I look perfectly fine. I would say on my best days I have about 75% of energy from my pre-ME/CFS body. Still, I wouldn’t be able to climb Mt. Everest with that. Anyway, I put on makeup and I push myself to go out because I’m really that type of person, I like going out. Some days I am able to exercise, but I’ve had this condition for long enough to know when I should stay at home and turn down an invitation to go somewhere. There are times though when I would push myself, and I would actually take tequila shots on my nights out. Those were moments of lapse in judgment. But you have to understand, it felt like my social life was violently taken out of my hands at age 26, when I was at my peak and I actually had the money to go out! I eventually found several jobs which supported my unusual need for moments of rest. My boss/partners were so understanding. When I couldn’t make it to meetings, I will just message them that I couldn’t, because they cannot do anything anyway. The good thing is, I work exceptionally well. Not to brag about it, but if you knew who my boss was, you’d understand that I am good at the things I do and I have to meet really high standards. I also took a leap of faith and enrolled myself in graduate studies for Clinical Psychology in 2015, and again, not to brag but my grades were excellent. I’m just driving the point that I am not lazy and malingering, and I don’t need to think “more positively”. I had dreamed of a whole life ahead of me and I have high standards for myself. I cannot pray Chronic Fatigue Syndrome away. On that note, I also have to tell you that because we couldn’t find a cure in 2011, I saw the chief exorcist of the Philippine Roman Catholic church in 2012, because I also believe in illnesses brought about by the evil one. Thankfully my case wasn’t spiritual.

I had to stop working and studying in 2016 because I felt I was reaching my physical limit. And then JC and I got pregnant, and I was really scared that I would not be strong enough to endure pregnancy and childbirth. I consider it a huge blessing from God that I was able to pull through. This might sound awkward but I know people have this silent question in their heads: if you get fatigued easily, how are you able to have sex? I will answer that in the straightest way possible– the cuddling time usually consists of JC propping my feet up on a pillow to improve blood flow, and me catching my breath and feeling like I’m dying. 🙂 I mean if you really want something you gotta make sacrifices, right? 🙂 I’m just thankful I was able to conceive because actually a Protein S deficiency, which contributes to excessive blood clotting, might not have made it possible for me to have a baby. I guess, good job to us!

It’s easy to dismiss my ME/CFS as a mild to moderate case of it, and I do have some well-meaning people telling me to “just relax” and eat healthy, and all that advice, and I do try to appreciate them but deep inside I want to snap. But I’ve said it before, ME/CFS is a cruel disease and I would never wish it on my worst enemy. When they said you can achieve anything you put your mind into, they obviously have not encountered an ME/CFS patient struggling to even get out of bed. I would also like to point out that my body pre-ME/CFS was strong. I have climbed mountains, literally, in Batangas and Pinatubo. I was an active cheerleader in high school. I was a one-time broker for government securities (a stressful industry to be in), and later on heeded my creative side and pursued a career in Solar Entertainment as a copywriter. I loved my job, and contrary to what one doctor said, I wasn’t looking for an excuse to quit it.

When you see me having fun with you at an event, it would be easy to dismiss my story and say Kaya mo naman pala eh. Truth is, first I don’t want to disappoint myself because I rarely get to party and second I don’t want to disappoint you. I don’t want to be the party pooper, and ask my husband to go home with me when we’re still having fun socializing with friends. Eventually we both know that the dancing and drinking could be followed by post-exertional malaise (PEM). I would have a flare-up and I would have to ask someone else to take care of my son because I could not get out of bed. I will only tell you once that I am tired, because it’s embarrassing for me to repeat it over and over. But if you’re my friend I ask you to be sensitive, and more importantly I ask you to believe. Because I do try hard. *tears* hehe. I remember my friends, my sister and I went on a trip to Taiwan and I felt so guilty because we couldn’t go to a lot of places. Everyone had to adjust for me because I got tired easily. I hate that feeling. Two years prior to that trip my sister Gemma and I took a risk and went to Hong Kong, just the two of us. She badly wanted to see Avenue of the Stars and I couldn’t walk all the way to that place. A year later we went there again, we still were unable to see Avenue of the Stars haha! It’s quite funny when I remember it now, but I do want to apologize to my closest friends Leah, Becca and Pao, whose plans were hampered by me and my need to rest. When I got pregnant and went to the US on the 9th week of my pregnancy, I had no choice but to sit on a wheelchair and be pushed around. The control freak in me had a hard time dealing.

Anyway, I said I wouldn’t write a long medical history but I sort of did so sorry! But if you’re still reading this, I would like to ask you read about ME/CFS, watch the movie Unrest on Netflix, or Jen Brea’s TED Talk on Youtube. If you don’t want to, it’s fine. But it would be really cool if you do! More importantly, please offer a prayer for all ME/CFS patients especially those with severe cases, who have been bed-bound for years, who cannot clean themselves, feed themselves, or even let sunlight into their rooms. ME/CFS can strike you, or a loved one. It can happen to your mom, or your child. And if that happens, I hope you will be compassionate to that person, and be patient. No one wants to be tired all the time. I hate fatigue when it happens. This year I am advocating for me, and M.E. I am almost 33 years old, I cannot stay silent about the injustice happening to ME/CFS patients and the disbelief we encounter in all forms each day.

Lastly I want to thank JC, my family and my in-laws and my closest friends who have been very understanding and supportive. Who have generously given their time to take care of Jacob, making sure his needs are met when I couldn’t meet them myself. I guess that’s the most important thing in my life right now. 🙂

Thanks for reading! If you want to learn more about my experience with ME/CFS or what it’s like to have anxiety and see a psychologist for it, feel free to reach out to me, you know how to. 🙂 Mental health is also one of the things I am advocating for this year, we should all try to see a mental health professional at least once a year just to make sure that we’re all good in that aspect.

xx Lainey

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