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?
It was the first time I ever went to get IV fluids for acute symptom management. I was selling “POTS (postural orthostatic tachycardia syndrome) flare-up” at the hospital, and they obliged with 2L of IV saline. I received 2 more liters of fluid from school clinic two days later (Friday).I went again on Monday to school clinic for more fluids. Next day I headed to ED and received more fluids. On Wednesday, like a good patient I am, I went to see my primary care doctor as instructed at ED (reason below), and while talking to her sitting down, I felt like fainting, so they put me on the sick bed. My doctor decided there’s clearly something wrong if my “POTS” got this severe all of sudden, and sent me to ED. It was third time showing up at in a week, so they admitted me.
Over the course of that one week I was going in and out of the ED and the clinic, I progressed from being able to walk unassisted (I used mobility devices more due to pain, not weakness until then) to needing a cane full time for balance, and the day I was admitted, I couldn’t support myself with a cane, and resorted to my walker. I went from being house-bound but still spending several hours in the living room, to only a couple of hours (during which I made My M.E. Story 1), to mostly bed-bound. I started to experience shortness of breath from just sitting reclined on my bed.
I realized I was dealing with a viral reactivation on 19th when I noticed the “shingles” pain. That’s when I pressed the panic button (figuratively; thankfully I don’t get anxiety or pain attacks). I had 4 of those episodes since last October. Each time, my functionality dropped dramatically, and I never recovered back to the baseline prior to the viral episode. When the fourth episode of shingles was over, I was house-bound except for doctors’ appointments. I would occasionally go out for a quick grub with my husband, but that was it. So when I realized what was happening, I felt like I had to do something. I knew I’d keep getting worse for another couple of weeks, and saw where I was headed – severe M.E., completely bed-bound, 100% time.
I’ve always been an ambitious person. I was on track to achieve my dream since I was 11 or 12: becoming a scientist, teaching and researching at a world-class university. I was working towards a Ph.D. in geophysics at Stanford. Then M.E. happened. Everything came to a halt, and for a long time, I struggled with depression. My mood started to improve since last December thanks to finding the working anti-depressant finally. Once my depression was under control, I was determined to make it work and get my Ph.D. despite M.E. Then shingles #3 and #4 happened, and it was no longer possible for me to go to my lab to get any work done. So I went on the medical leave in April.
But I was the same driven person. Surely there were nights that I cried, feeling like the only dream I had all my life (after I grew out of wanting to be somebody because of a cool uniform) slipping away. But I wasn’t going to sit around at home playing video games until I’d get better. I quickly had many plans for time I’d spend at home during my leave. I had (still do) every intention of returning to school once I’d be able to work 50% time, and I projected my leave to end within a year. I had an ambitious plan that I am not going to reveal yet, that actually stirred up some passion inside me. I was going to make the best of my time away from school. It would involve working in front of my computer.
So when I saw the immediate path ahead of me, one leading to severe M.E. where I’d be stuck in the bed all day, I was desperate to find another way. I knew there wasn’t any well-established treatment option to make the viral reactivation disappear, but I also knew I would regret forever if I’d become bed-bound after doing nothing and waiting for it to pass after several weeks. I had to know I tried. So I went to the hospital hoping they would try something, anything, even if unproven, even if it carried a high risk.
During my stay at the hospital that lasted a little over a week, I went from being able to stand temporarily to use the bedside commode, to completely bed-bound, 100% time, severe M.E. I could tell I was getting worse day by day. And when I was pushed past my limit once, I crashed severely immediately. And I have not been able to sit up ever since.
It’s been three weeks since my first trip to the ED for IV fluid. In those three weeks, my goal regarding my health went from feeling better for the day, to overcoming a bad week, to sitting just a few hours per day (when I got admitted to the hospital), to now, getting up for a few minutes to take care of my own “business” (potty).
Three weeks ago, I was dead set on achieving the one dream I’ve always had, which was temporarily delayed. So I am surprised how quickly I became okay with the idea of being able to sit for a couple of hours each day. I will share more details about my hospital stay in other posts, but I had occasions that I felt I needed to appeal to doctors that I had a realistic objective about improvement with my M.E. symptoms. I told them “I am not asking to go back to where I was a month ago. All I want is to be able to sit for a couple hours a day, because I can make a career out of it.” And I meant it. Just like that, my life-long dream was put aside.
Please don’t get me wrong. I am not giving up and resigning to a life confined to my mattress. I still very much want to go back to school and keep studying the Earth’s deep interior structures. I even have a tattoo of the Earth with a cross-section on my foot. When I get well enough, I am going back to school.
But I also cannot keep chasing a dream that M.E. dictates I cannot do so. During these three weeks, I have experienced a life time. I became an infant again, wearing a diaper, with a baby monitor on my bedside. A baby learning how to turn, being spoon fed my pureed meal. But I was also fifty years into my future, shaking with a walker, crying when my urine spilled over my bed the very first time I had to use a bedpan, looking into nursing homes.
I felt my heart getting overwhelmed by the task it was doing the whole life and my breath dwindling. I was unable to speak about the extreme pain in my hip from the awkward angle of my leg because I couldn’t move. Every nerve ending of my body screaming. So painful and rough that I wished they would stop reminding me to breathe again.
Here I am, exactly where I was so afraid to be at heading to the hospital. I am still noticing some symptoms getting worse, but overall, it seems like I’ve hit the bottom of my functionality from this episode of viral reactivation. And now, I’m just glad that I have light electronic devices that keep me connected to the world. I can continue to speak up and write my thoughts all over the social media. And because it happened already, there is no more fear of becoming bed-bound. I think I will improve over time because I have a great team of people looking after my health, although I don’t know how much or how fast it’s going to happen.
For now, though, it seems like my life has taken a sharp turn in a very short time. I cannot work on the cool project I was planning on anymore until I can shed the word severe off the description of my M.E. So this blog that I started as a side project that would eventually help with the big one has taken the place of my creative outlet. Not seismology, not programming (hint hint). Just somewhere I can access from my phone and occasionally from my laptop.
Maybe the impact of being so ill has not hit me yet. It happened so quickly after all. To be honest, I am surprised how well I am handling the situation. For the first time, my husband and I discussed “if I can’t go back to school.” I thought I could see a clear path for my career through my entire life, and I was on it, but it’s all muddled now.
Maybe past three weeks were just a fluke and I would laugh at how dramatic I sound now. But there is no doubt now that M.E. changed my life completely these short weeks because the impact was not only on my physical body, but who I always have been. Somehow tears don’t come to me anymore that I may not be able to achieve the one career goal I always had. Maybe it was a roller coaster ride completing the circle of life, and I am ready for the next turn.