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.
Being at the hospital was overwhelming. I couldn’t get enough sleep at night due to pain, and in the morning due to someone coming in to talk to me before I was ready to wake up. With my M.E. becoming more severe, I’ve found even just listening to a person talk to me is exhausting, especially when someone talks fast and/or loud. Talking to participate in a conversation is even more challenging with having to use my facial muscles and form sentences with worsening cognitive symptoms. And I had to do a lot of talking and listening.
Strong emotions also add to worsening M.E. symptoms. On that Friday afternoon, I had just talked to the infectious disease doctor who showed so much compassion and understood my struggles. She delivered Dr. Montoya’s recommendation for me that from his experience, patients with progression like mine only improved if they had really good sleep as much as possible, and were very careful to avoid any kind of exertions. She told me the hospital was not the best place to for that, and I agreed with her advice. After facing so many medical professionals ignorant about proper management of M.E. patients, talking to her was a huge relief, and more importantly, the validation of my words and effort after encountering so much doubt. It was difficult to suppress many kinds of emotions. So that afternoon, I was extremely exhausted, past the limit that my M.E. set, at the brink of my physical capacity.
My body demanded I lay still and give it some chance to recover. But I needed to pee. I called my nurse to use the bedside commode, and a few minutes later, she walked in with the resident (I will refer to her as Dr. R) and intern doctors on my primary care team. The resident doctor asked me to walk to the restroom instead of using the commode.
Things are pretty muggy, even more than usual for my tired brain. But I remember I clearly stated that I was not feeling well and I should not walk, that in fact I wasn’t even sure standing up to use the commode was a good idea but my bladder was really full, so I called for my nurse for assistance. My team was determined to discharge me that afternoon. She told me I’d need to walk to the bathroom at home, and asked me what I would do at home in this situation then. I tried to explain that at home I would never have spent hours talking to people and become so exhausted, so this situation would never come up. But she would not back off and let me just use the commode. She didn’t seem to understand or believe my words that walking to the bathroom at that moment would be harmful to my body. I felt like I had no choice in the matter but to walk.
I knew I wouldn’t feel well, but I did not have even the slightest idea of what was to come. I marched on several steps to the restroom, and with each step, I could feel my heart rate rising. Sitting on the toilet, I started experiencing what felt like more and more nerve ending on my body screaming. On my walk back to the bed, I started losing balance and nearly fell (my nurse and a doctor were by my side to make sure I didn’t). By the time I was on my bed, the scream spread to my whole body.
My body shut down.
Everything is even more fuzzier from this point. I will be as factual as I can and note if I can’t clearly remember the contents. I remember them examining me, hooking me back to the cardiac monitor. Excruciating pain. I did not have much control over movement or speech. I remember she asking me if I wanted to (or were ready to?) go home multiple times because I could not produce a clear audible or visual sign. I was trying to say yes, remembering what my conversation with the infectious disease doctor, and realizing the gravity of the ongoing situation because I was at the hospital. I remember still making effort to talk to Dr. R. I remember the word “refuse” coming from her and me telling her I didn’t appreciate how she repeatedly kept making me sound like I was not cooperating when I was just trying to protect my body (I had told PT/OT I couldn’t get up and do tasks they asked me to do when they came by because I knew my body wouldn’t tolerate). I forced myself to talk to her despite the difficulty. I remember beeping sounds alerting my heart rate spiking, or oxygen level dropping. My husband walking in sometime and me feeling relief at that moment, finally being able to stop expending so much non-existent energy to make audible sound to the continously talking doctor because she started to speak to him instead. More beeps, periods of time that felt like even moving my diaphragm was too much, beeps, someone telling me to take a deep breath, gasping for the air. And pain. Lots of pain.
I remember wishing they’d stop telling me to breathe as I felt my breath dwindling, just hoping for it to be over. I went to the hospital for a chance to escape the confinement of my bed, because I wanted to live. But that moment, I just wanted my suffering to end. I tasted what it’d be like to have very severe M.E. I was too weak to move, so I was practically paralyzed. I couldn’t speak. I was in pain but no way to express my discomfort. At that moment, I was trapped in my body.
I was thirsty and my mouth was drying, but I couldn’t ask for water for quite a while. When I got hungry later, all I could manage was some meal replacement drink that my husband was holding the bottle and the straw. Sucking on a straw never felt so difficult, but I had to try. When my bladder was full later, I whispered out the word pee, getting frustrated that I had to make the one syllable sound again because my husband couldn’t understand me right away.
Although my strength was gradually returning to me, I was still too weak to turn myself. My husband and a nurse worked together to move me onto a bedpan. When I was done, my urine spilled over, and my nurse said they needed to change the sheet. Then it hit me. I peed in the bed. I was crying quite a bit. It was not supposed to happen until I was over 80 with Altzheimer.
I was still very weak at night time. I remembered what Dr. R was telling my husband earlier and realized that I would need to do something similarly exerting again next day for OT/PT evaluation. I wasn’t sure how much I would be able to recover from another body shutdown. So I made an emotional phone call to my grandmother in Korea just in case I couldn’t speak again. I grew up in her house, and spent more time with her than anyone else in the world. I was naturally her favorite grandchild, her baby girl. It was important that I told her I loved her, even if that took a tremendous amount of effort. My husband called her and put her in speaker phone, and placed my cellphone by my side.
I don’t think she understands what kind of illness I am dealing with, and I like it that way. I think it’d be better for her not to know how bad M.E. can be. I’ve kept my parents fully informed -I need their help after all- but don’t know how much they have told my grandmother. But I think we have a mutual, unspoken agreement that it would be best not to burden her with all the details of this disease’s brutality; she’s already worried about me enough. So I could not dare to tell her I was calling her just in case it was the last time. She wanted to talk to me more, but I had to keep my call brief – with more emotional surge, it was increasingly difficult to speak coherently.
Next morning, I was woken up by the presence of my attending doctor. I was much improved than the night before, but definitely worse than the previous morning. I learned that my primary care team received the recommendation from Dr. Montoya and finally on the same page with me that I should be avoiding any kind of exertions. It was a bitter-sweet moment: a great relief, only wishing they had waited one more night to test me to go home.
Throughout the day, I found the new boundaries that M.E. set. No more walking. At least for the time being. Not just walking, but even just sitting. It was letting me know again what would happen if I, or someone, tried to bend its will. I recovered enough to turn myself and move my limbs, but my orthostatic intolerance was at a whole new level. I could not tolerate even a small amount of inclination just for a little while before I started to get sick(er). I made multiple plans to try to sit up and use the commode again, but I was crashing too frequently from just talking to a person or two. My attending doctor reduced the number of people who would be stopping by per day to conserve my energy, but I had already become too frail. So I never managed to sit up during rest of my hospital stay.
I had another episode of my body shutting down a few days later. It was triggered from simply turning my body while I was extremely exhausted. I coughed several times nonstop, and that was enough to send my body to paralysis. One of thoughts that went through my head amongst beeps, nasal cannula, and busy bodies around me was, “Only if people can see this. Nobody can say this is just fatigue or laziness. This is M.E.” There wouldn’t be a recording of it even if I have another episode – the situation is too dire to have someone hold up their phone. So I am showing with my words instead.
I cannot just fault a doctor for my 2′ by 6′ (60cm by 1.8m for international folks) prison cell on my mattress. The walk is a result of societal failure to recognize ME as a serious disease it is. I did ask Dr. R to be removed from my care team, but I also know she was doing what she thought was best for me. When medical schools do not even mention ME/CFS to their students, and enormous amount of misinformation about M.E. is floating out, it cannot be a fault of one doctor, but many. Patients with M.E. and their loved ones have been marching alone, neglected by the majority of the medical community, for too long.
I am very fortunate that I was staying at the home institution of Dr. Montoya, who everyone seemed to respect very much. Because of his great reputation, my team immediately took in his recommendation. The grave truth is, most hospitals do not have a Dr. Montoya and majority of M.E. patients are mistreated when they walk in with acute and/or urgent issues. Heck, even I had a hard time until his message arrived because doctors at the same hospital were not educated about M.E.
Would I be still standing if I didn’t walk that Friday afternoon? Honestly, I don’t know the answer to that. After all, I was waking up each morning feeling worse than the previous morning. For sure, it worsened my condition and at minimum, it accelerated the progression of M.E. But I know I could have arrived here eventually without any external trigger. And this is another reason I cannot just hate on one doctor. M.E. has been a tormenting, treacherous disease that likes to throw new surprises and challenges at me every time I thought I finally got the hang of it.
Earlier today, I attempted to sit up and stand again. I was better rested than usual, and I needed to know that I would be able to stand and walk again as soon as (if) my orthostatic issue improves after this period of exacerbation is over (My muscles shouldn’t have atrophied yet, but I was suspicious that I had a separate weakness issue with my legs). I held in the nausea and the feeling that I can only describe as life draining out of my head, and put my feet on the ground under the protection of my husband. With my legs shaking and my knees giving in, I quickly fell onto my bed. And then I crashed and slept for several hours and before I woke up to finish this piece of writing that I have been working on for several days. It seems I’m in a long haul of rehab until I can shed off the word severe from the description of my M.E. and walk again. I understand it’s not going to be a 100-yard sprint, or even a marathon, but something much longer that I need to walk slower, tread carefully. But I will get there, or at least keep on.