Image from page 401 of "The nation" (1865)

PACE trial

This week, an investigative journalist David Tuller published his articles on PACE trial (Trial by Error first, second, last), exposing the flaws from one of the most influential clinical study for CFS. Cort Johnson’s blog does an excellent job at summarizing lengthy articles published over three days, so I won’t go into the problems of PACE trials and what the articles revealed. Instead, I would like to share my quick experience with PACE trial.

When I was hospitalized in May, I had to deal with team physicians who had no idea about ME. It was frustrating to have to explain that I had this serious disease that they had no clue about, and the acute exacerbation could have a long term consequences. The resident doctor on my team went home and did some “research”. Of course, what she read was the PACE trial.

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In the darkness

August 8th is Severe ME Day and this year’s theme is home care. I’m going a but tangential here because I’m not exactly writing about the need for home care for daily living (which I certainly do need). Nonetheless, when I heard this year’s theme, it reminded me of my experience with professional in-home care visits I received from the hospital discharge order.

Severe ME Day 2015. #sufferingthesilence photo

Severe ME Day, 2015.
I wanted to mark my arm with “M.E.” like others have done, but decided not to because, thanks to M.E., I wouldn’t be able to wash it off for a long time. Taking a shower is a luxury that I have not been able to enjoy for months now.

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Makeover

I’ve had the same hair style for a while – long hair dyed Burgundy, which would fade to brown, and curly permed, so that I wouldn’t have to do anything to my hair everyday. I’ve always been an I-would-rather-sleep-five-more-minutes-than-do-my-hair-or-makeup person, so I do not even own a brush for my hair. All I needed to do was to run through my hair with my fingers while shampooing.

As my M.E. picked up its pace quickly since last year, my hair washing became less and less frequent. By early spring this year, it was down to once a week, and by May, even that was becoming increasingly difficult. I hadn’t washed my hair for two weeks when I was admitted at the hospital.

At the hospital, when I asked for dry shampoo, they gave me a shampoo cap that I did not know existed. I just had to wear it like a shower cap, and someone would “massage” my hair to wash it with soap and water that were inside the cap. I brought a few of them home with me when I was discharged and used it occassionally. But shampooing this way while lying in bed meant no detangling hair during the wash – in fact I think it made it worse. Also the oil and dirt that were building up on my scalp could not be rinsed away.

On one of my better days several weeks ago, I noticed a giant knot on my hair. My ponytail was undone from rubbing my head against the pillow, and I couldn’t tie up my hair again because of the tangles. Without thinking much, I started running my hands through the mess.
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PEM by numbers

I want to share quickly what PEM looks like with an objective measurement. A good indicator of my condition is my heart rate. Here’s a poster I put together (using a free phone app and as quick as possible because I’m still not recovered as you can see, so please excuse the poor quality of graphical aesthetics!) showing my resting heart rate since last month measured by Fitbit. It tracks my baseline condition pretty well, with higher heart rate indicating my body feeling overworked, making me more susceptible to crashing.

PEM heart rate

PEM (Post-Exertional Malaise), also referred to as PENE (Post-Exertional Neuroimmune Exhaustion), is a hallmark symptom of ME. Patients with ME (PwME) experience severe exacerbation of symptoms following exertions. Threshold for mental and physical activities that would be too “exerting” is much lower for ME patients. Recovery time is prolonged, often lasting days or even weeks.

The top graph was snapped a while ago when I started thinking about this blog entry. The bottom graph was snapped today. Yes, I’ve been tachycardiac all day and writing a blog right now is not the best thing for my health, but f* ME! (And for that matter, publishing a post yesterday did not help but I have too many things that I have been working on and wanted to get something out). This poster would be better if I make it now instead of a week later, and I need to have a blog post to go with it! It is partially to show why I haven’t been as active as I would like recently.

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a stranger at home

It’s been a month since we moved to a new apartment. With dramatic change in my functionality and becoming bed-bound, we had to find and move to a new place ASAP to accommodate the hospital bed and mobility devices. We had to move later in the summer anyway, but with my sudden worsening of ME, any kind of “plans” we had meant nothing.

Within a week after my discharge, my husband managed to find us a new place, and we moved the week after. I was (am) still bed-bound, so you might wonder how I got around, getting to doctors and moving to a new place. The magic device is my reclining wheelchair.

I was discharged with the order for one (how I got it ordered is a part of a long story that I will write sometime), but the DME vendor that the hospital used didn’t have one in stock, and they didn’t know when their order would come in. Medical transport service that the hospital case manager referred us to quoted us $600 for a round trip to my doctor’s office. We (my husband) called around but the best we could get was $450. Yeah, no. So my awesome husband called around other DME vendors to locate a reclining wheelchair rental, and he found one!

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MIA is to be present

When I told my best friend (really more like a sister!) since elementary school, S, that I was at the hospital and had gotten much more ill, she immediately arranged a trip out here with her family. Her husband (also my friend) N is a student, so I know it’s not an easy thing for them to afford a trip out to the west coast, especially when planned in such a short time.

They were finally here this past week, as soon as the term was over for N. The last time I saw their little boy, J, was when he was just a few days old. I saw him come to this world and I love him to death. My friends well understood I could not afford to have visitors all day and I wanted them to enjoy the Bay Area and the civilization (Our joke! They live in a rural mid-west town). So the plan was for them to visit me every evening.

It worked out nicely. I would pre-rest all day, and they would stay until my bed time. I would immediately rest whatever fatigue I accumulated. One great thing about an old, childhood friend, is that we really are family and there’s no pressure for me to entertain them. It’s just great to see each other, no words necessary. Our evenings mostly consisted of watching J chase around my cats, and that was a good time. I’m so familiar with their voices like my husband’s, so it didn’t overwhelm me like having any other people talk around me – usually, I cannot handle two people in a room talking. They were also mindful about not over-stimulating me. And a lot of times, one of them would have to go chase J anyway to have constant eyes on him in an apartment that was not child-proofed. I saved all my energy to see them. I was not rested enough when I woke up in the morning, so I spent most of the days resting. Naturally I was mostly MIA on social media.

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Making sense out of senses

Thanks to my geeky father, I was exposed to personal computers earlier than most of my friends did. My dad set up his computer so that his five year old daughter could watch “stars” as if flying through the universe (which I later learned was a screen saver). When I was a couple years older, I had my own computer, a hand-me-down running on 286 processor, and I played games that came on floppy disks. I was the cool kid on the block. 
By the time I was nine or ten, I had saved up enough allowance, and my dad built me a brand new computer with it. It was a great feat. It was running on Windows 95 and I was still the cool kid who could type up homework and use the Internet.

During the lifetime of my first computer, PCs became widespread and most of my friends had computers at home. Computer programs and operating systems became more and more sophisticated each year with the growing power of hardware. To help me keep up with constantly evolving softwares, my dad would update the OS, or upgrade pieces of hardware for me once in a while. I remember bragging to my friends when he bought me a 4.3GB hard drive when my friends only had 1.6GB. But those small upgrades could not hold up much longer. I didn’t have much understanding about computers, but I knew about Windows’ multi-tasking, unlike previous MS-DOS. I could launch multiple programs and go back and forth. As I got older, I learned to use more programs, and each program’s minimum system requirement grew more demanding. Towards the end of my first computer’s life, it would barely meet the system requirement for new games that I wanted to play. With all the applications open and my switching around, my computer would get sluggish, and sometimes it would completely freeze the operating system and crash. All those programs that I was demanding my computer to run were beyond its processing and memory capacity.

With my M.E. worsening, I feel like I’m that old computer, being overwhelmed by all the stimuli that my brain has to process. All the signals are amplified, requiring more brain power to sort through. But my brain is less capable than before, so when it’s inundated with everything that my sensory nerves are sending, it crashes, just like the old computer did.

We easily recognize conscious effort that we have to put in when we are walking around a shopping mall, or thinking hard about the math problem in front of us. At some point in our lives, we had to learn these activities. But using our basic senses – seeing the blue sky, hearing morning birds chirping, smelling fresh-baked bread, feeling warmth of a tea mug, tasting sweet and bitter chocolate – is something that feels innate to us. Just like breathing, we don’t have to be conscious about using our senses. It feels natural.

So explaining to others that these things that should be effortless are overwhelming is not easy. It’s not only the physical use of my body that has a toll, but also anything that makes our brain spin. When I am overloaded with senses, everything gets tangled up and making sense out of those senses require much more effort than sum of each individual stimulation. That’s why I don’t like to have more than one person in the room with me, because I cannot make anything out of two different voices without getting exhausted. I  don’t listen to music although I love it very much – I was in choir in high school and one of classes I took during the first semester of college was music theory. I cringe when I sense fragrances and refuse to wear deodorant. I can’t kill time watching movies while resting in bed. Many things I loved or took for granted became a part of exertions that I am told to avoid if I want a chance for healing. 

So I sometimes wear shades indoors to limit the amount of light that my optic nerves have to transmit. Or I close my eyes while listening to someone talking to me, so that my brain has one less sense to process. I don’t keep my shades on as a fashion statement, and I am not lacking social skills because I’m not making the eye contact. I don’t mean to be rude when I request someone with a perfume on to leave the room. I am not trying to be annoying when I ask people to speak softer and slower, one person at a time. I don’t want to hurt someone’s feeling when I refuse a hug or gentle strokes on my hands. 

The thing is, when I am in those situations, I am most likely already overwhelmed. When I’m exhausted from flooding sensory stimuli, I don’t have energy to process anything and I get irritable. I just want some time to relax and avoid my body and/or brain shutting down. I am just trying to look after myself. But because I was trying to do what was best for me and M.E. didn’t spare me some energy to explain, phrases like “poor social skill”, “depressed”, and “flat affable” are permanently left in my medical record from my hospital stay when none of those words were true description of me during those moments. 

When I am overwhelmed by my  surroundings, a lot of times, I can’t even think properly about what I need to ask for some space. I get agitated that people cannot see I am clearly suffering. Or even if they notice I’m getting uncomfortable, but they don’t realize the offender is merely my existence in that specific place at that moment, and carry on. Or in some situations, I just end up swallowing all the entangled mess of signals going to my brain and face much worse PEM(post-exertional malaise) because I cannot explain my need to someone who is biased towards M.E. 

Sensory overload is not unique to M.E. At least (when I am in a better condition) I can express what was amiss to others around me. But a child with a sensory processing or autistic spectrum disorder may not even know what upsets her and throw a tantrum. People who experience sensory overload are not trying to be annoying or oversensitive. It’s just how our brains are wired to our sensory nerves. So instead of passing quick judgement as poor, socially unacceptable behavior, please open your heart and show your patience and understanding when you encounter someone struggling with  over-stimulation. We might be too overwhelmed at the moment to say thank you, and sometimes take a while to be able to even recognize your kindness (because our brains are too busy, not knowing what to do with all the stimuli), but we definitely will know and appreciate your thoughtfulness.

The Walk

It’s been a couple of weeks since I set my feet on the floor and motioned forward. When I did, I knew there would be consequences, but I never expected that would be the last time I would be walking for a while. I don’t know how long that ‘while’ would be. Days have been past. Weeks? Months? Years (I certainly hope not)?

A day at the hospital is surprisingly long and busy. You get woken up early in the morning by a phlebotomist for blood work. You fall back asleep, and it is time to take your vitals. Early morning flies by with nurses coming in and out introducing themselves after morning shift change, brining your morning medications, and asking you questions about your latest bowel movement, pain level, etc.; ordering breakfast and eating; and talking to your primary team doctors. Doctors discuss with you plans they have for you, and often times, you find out you need to talk to multiple doctors for specialist consults, all sort of therapists, nutritionist, social worker, financial team, and the list goes on. And all these people involved in your care come in one after another, and before you know it, your resident doctor is checking on you in the late afternoon before s/he passes the baton to the night cover doctor.

M.E. (myalgic encephalomyelitis) does not care about what you need to do, even if those are to make your health improve and help with M.E. symptoms, or very important life events that you absolutely don’t want to miss. It decides how much your body and mind can take before you must rest without consulting you, and often doesn’t tell you where that limit is. If you try to exert your will power and show who’s the boss, you quickly learn repercussions are not worth it and must obey M.E.’s will. Otherwise, it can leave you with heavy damage, sometimes irreparable.

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Three weeks and a life time

When I uploaded My M.E. Story 2, I didn’t think it’d get more than 100 views – my family and friends, and some from people following #chilliMEchallenge. I appreciate every word of support that I’ve received since. I’ve gone through such a drastic change in my life past three weeks, not in a good way as you know if you’ve watched my video from the hospital, and seeing my message getting passed around gave me the positive spark I needed to continue what I was planning on before I ended up at the hospital. I have to give the credit to Brenda and Nicole who kept me company during my hospital stay, heard my numerous rants about frustrations I was encountering, and encouraged me to share my story with more people.

I started feeling more sick than usual from 9th, but initially I just thought it was a bad case of PEM (post-exertional malaise). I went out for a couple of hours on 12th which involved short walking with a walker and mostly sitting. Next day, I was feeling so bad that I went to the emergency department (ED) to get IV fluids in the late afternoon. I was thinking “I had to have one of the worst days while I was tweeting for #ChronicLife Tweeter take over.” I was tweeting my day as a patient with chronic illness, and it was partially for May 12th, the international ME awareness day. It’s also when I decided to open this blog, and be a more active part of the ME patient community. I went on leave of absence from school in April, and ME patient advocacy was one of projects that I had in mind as something to do at home while trying to get better. What an interesting start, huh?

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My M.E. Story 2

When I posted my first M.E. story video recently, I didn’t realize I was was going through another viral reactivation. I initially thought I was just dealing with a prolonged, severe crash. It turned out to be another viral reactivation episode for me, which meant substantial exacerbation of all M.E. symptoms. I didn’t realize this until I started getting new pain from shingles. In retrospect, I should not have done any kind of “strenuous activities” such as making videos and rest in bed as much as I could. I should have known better to do nothing while feeling so sick to need IV fluids. Oh, well, hind sight is 20/20. I was just enthusiastic about participating in M.E. awareness movement (especially Chilli M.E. Challenge), and wanted to act on it, especially because I was feeling lousy that week.

After noticing the nerve pain that I associate with shingles (I can distinguish it from postherpetic neuralgia), I panicked. It was my 5th time since last October, and with each viral reactivation (shingles is caused by the reactivation of chickenpox virus, or varicella zoster virus), my M.E. has been worsening dramatically. At that point, I was already mostly bed-bound  and experiencing shortness of breath just from sitting against pillows. I knew I still had not hit the bottom yet based on past experience, so I went to the hospital, hoping they might be willing to do some aggressive therapies to minimize the damage to my body.

Now I am back home, still bed-bound, after spending 8 days at the hospital. I wonder if I never went to the hospital and tried to just rest at home, I’d at least be able to stand up for 30 seconds to get to the restroom. But I can’t play what ifs and the reality now is, I am a severe M.E. patient. While at the hospital, I also tasted what it would be like to have very severe M.E. During those moments, I was practically paralyzed and could not eat, drink, or speak. I think it really solidified my resolve to be an active part of M.E. community. I am not going to wait passively hoping for a cure, knowing in the future, my mind could be trapped in the shall of my body.

I recorded this video on my last day at the hospital. It’s been a few days, and I’m just getting around posting it. I am so thankful about tech gadgets that let me still be a part of the world even if my body is confined on my bed. Please watch my video posted below, and make a donation for M.E. research.

For donations:

GoFundMe for Chilli M.E. Challenge
End ME/CFS Project @ Open Medicine Foundation
CFS Research Center @ Stanford

For UK: Invest in ME

After thought:
You will see me pause frequently while talking and it is due to cognitive impairment caused by M.E. My language errors (that cannot be blamed on English being my second language!) have become more and more noticeable past couple of weeks as my M.E. worsened. If you see glaring errors from anything I write, you know why, so please don’t judge me! It is difficult enough to write while stuck in bed and getting drained just for being awake, so I apologize for being unable to proof read my writings.

Please check out #chilliMEchallenge for other stories and funny videos!