骨髄移植後PERM再発 vs 改善途中 + 白衣の天使

PERM再発
5/2021-6/2021

reduced tidal volume (restrictive respiratory failure)
the constant tightness around the chest and abdomen.
It‘s clear that the amount I can breath both in and out is a hundreth of what is was, just days ago.

every motion triggers an apnea involving whole body spasm. Legs extend, feet extend, arms flex snd hands clench. the back arches, while the abs and front chest wall clench in. The trunk is simultaneously doing both sit ups, bench curles? (gym machine where people train their chest wall and upper arm), 背屈, the body slightly twisting towards the stronger side, or the side the spasm is triggered stronger.

the inability to move, the back soar from a predecubitus (bed sore), but asking the nurses to turn the body... right, my body... causes me to stop breathing...

it’s certainly EASIER to bare the pain.
I’m fully aware of the risks of getting an open pressure wound. It’ll likely get infected, the infection can easily spread to the entire body with heavy immunosuppression.

cognitively, I know I must move. if I can’t even move a milimeter, i need to hit the nurse-call touch sensor. call someone snd have this body rolled.

hitting the sensor is a trigger. neck motion? I stop breathing for a while. A knock on the door when entering, even a person simply entering... hyperkplexia, exaggerated startle, again stop breathing...

the nurse realizes that something is wrong. i cant speak. she starts guessing. i can’t even nod...

she realizes that maybe I’m not breathing, looks at the SpO2 monitor.
I know, that’s also a problem, but that’s not the reason why I called...

Eventually, the spasm slowly eases. I’m still motionless for the most part, but can sqeeze a short wisper out.

She can’t hear me... She didn’t notice I spoke. She tries guessing... eventually, bingo! yes! i nod for yes!

please turn me!
and yes! exactly. I was having trouble breathing.

the body is in constant contraction. i feel my muscles pulling my left shoulder out of its socket... it keeps pulling, stays in place for a while, semi- dislocated.

if i want to call for help, i must move. motion will trigger a whole body spasm. that’ll most likely pop my shoulder right out. on the other hand, if I bare this, motionlessly as possible, the constant contraction is slowly pulling my joint out. It’s agonizing in slow motion. I need to choose. apnea plus dislocation? or just slow dislocation?

slow dislocation seems like the better option. it might even be easier to snap back the joint in place.

I’m drenched in sweat, with my temperature fluctuating between 37.4-37.9C. (spikes of 39C at times)

No infecction, just unable to fully regulate my temperature. Of course, the muscles... ALL of the skeletal muscles of the body simultaneously contracting causes the body temperature rise, too.

“Drenched in sweat.”
This doesn’t begin to describe it. around my waste, the sheets are drenched, as if I urinated. the head, the pillow, the shoulders, the PJs I’m in are as wet as I took a shower in it. The bed sheets, like walking out of the sea and lying straight on it. I ask to change.

eyes, well, the eye lids do not open, especially on the left. The left is clenched shut, the right frequently blinking.

Technically, blink may not be accurate. the eye rolls out ward, then as this pull occurs, the eye lid forces itself shut. This couldn’t be a better exxample on how to illustrate that the oculomotor nerve ( CN III) inervates both the (!!! muscle) for eye (adduction? check terminology) and eyelid.

Nystagmus, the eye moving involuntary eye flickering. Double vision is the term, but things are more than duplicated. The motion is sickening, at times making it hard to know what I’m seeing. Letters are impossible to read with both eyes open, neither eye focusing on the same point. The visual field shakes, but at least with one eye closed, objects are seen in singular, not fantom pleural.

My lips are trembling, the (miken/ forehead) wrincled. Facial muscles are also twitching and tight, contracted. Perhaps depicting the torment from within. Is this an internal struggle? My body turned against me. The senses are felt. They come from the body, not an external stimulus. Yet The mind is free to travel or ignore. if our minds are who we are, our body too is a foreign object. A familiar object, yet external, nonetheless.

The teeth clench. Muscles tight. The motion to open the mouth is extremely limited. Chewing triggers a spasm, the teeth clench, and the wave of muscle contraction wipes across the whole body. I stop breathing, the back arches, while the abs curl. The nails dig in to the palm, the legs extend. Unable to breathe, there’sconly one way out. Relax (meditate) and wait till the contraction subsides. The key is to relax, let the miind travel elsewhere, go somewhere, the mountain or the sea.

The body consumes the oxygen in the blood, produce a bunch of CO2. The body flames up, sweat bursting out.

The chest still continues to expel the air in the lungs, while making sure the entry of air is forbidden.

Minutes pass. The body reaches its threashold. The mind starts to give in to the strong urge to take avbreath in. The mind allows the concept of not being able to breath, using up all the oxygen, accumulating all the CO2, allowing what the body is feeling to reach the mind.

Breathe, breathe, breathe.
wait! make sure not to take a deep breath, when the body stops cramping!

The O2 SAT drops. The body demands oxygen, the mind forcedly attempts to shut down instinct. The agony the bidy feels reaches the mind.

I tell myself to relax, so I use as little oxygen as possible. Simultaneously, I can’t stop myself from thinking “breathe! breathe, already”

I take a breath, finally. The chest wall is restricted, but the diaphragmn contracts, too. Though shallow, it’s the deeoest breath this body can take.

My mind is rushing, trying to limit the speed of inhalation, the depth of inhalation. Taking a breath, as instict wishes is yet another trigger.            

Muscle movement is a trigger. The respiratory system functions because of the (largest muscle?) in the boday. The Diaphragmn, the chest wall, back muscles, and those between the ribs ( intercostal muscles). There are all the accessory muscles that help this system. The largest muscle mass, vital to life. Of course the symptoms are strongest. Everything else, I can afford to chose motionless, imobility. I can’t choose to stop breathing and survive.

I can choose to sacrifice all motion, even gravity on my body. But I must breathe. I must breathe, even if that very motion causes me to teemporarily stop breathing. I must breathe, even if the fatigue accelerates the restriction of the tidal volume (the amount of air inhaled and exhaled with each breath). I must breathe, even if the act of breathing hastens death. I can’t choose, I can’t compensate. The less I can breathe with one breath, the more frequently I must take small breaths. I still must go on breathing, even when it hurts to breathe, even if I know I will suffer more later. I have to breathe.

my tongue is also a bulk of muscle. this too, naturally gets affected. Still, when I can’t chew, I can smash soft food between my tongue and palate. Food makes our body. The only way we can get better, reduce the risk of complications such as infections, is through consuming nutrition. There are plenty of food sustitutes. When unable to eat, they are vital for life. These products can keep our bodies maintain vital signs (heart rate, respiration, temperature) These products can help us maintain the body to stay alive.

Still, the human body evolved on food. As long as it is possible, I am driven to eat. Yes, the taste is wonderful. However, this was also the one act I had control over. I could choise to eat, to choose to try to keep this body from decaying. This was the one act that allowed me to choose: health, life over desth. Eating was the one thing I could choose, do, to try to stay alive.

I couldn’t thank enough all the nurses who patiently fed me. They were patient and nice. We even had delightful conversations at times. Othertimes, I was too out of breathe to say a word. I had numerous times when I became out of breath, after the food was in my mouth, needed to catch my breath. I stop breathing while trying to process the food to something I can swallow. I also got out of breath, even if I didn’t stop breathing in the process. I got out of breath, just swallowing the small portion of food that fir through the narrow slit between my teeth.

I took longer than an hour to eat, maybe closer to two per meal. This is several times longer than other patients.

Under COVID regulations, family are forbidden to visit. They, the nurses, had to feed me. Without rushing me, showing any negative emotions, they patiently and kindly fed me bit by bit.

Their grace was the reason I could even choose life. I could choose to consume nutrition, delicious food that made me happy.

In a day filled with torture, I was given the chance to feel happy. I was given the opportunity to excercise my free will. Eat. I could fight to live, because of their grace. For this, amongst all the other caring accts, I am eternally grateful.

I am alive, because God sent angels to me, angels in white cloathing called nurses. They are wonderful people and the reason why I’m alive today.