255 ~ STTW hits 3 years – 1/2 ~

17/11/2020

Three years, countless hours, and my entire soul woven into 256 chapters. Unfortunately, posts have been rather inconsistent this year and I haven’t been able to write frequently due to my health being on a continous roller-coaster. From random in between days of doing work I am passionate about, to another day with unanticipated dramatic events unfolding…

01/10/2020

The clock had just signaled 12 AM bringing in Dysautonomia awareness month and my electrical system went from few days of slow malfunction into a sudden crisis mode…

Gastroparesis causes fluctuating levels of nausea on a daily basis but it’s generally managed with medication. Somehow, the nausea had been on an uprise for the past few weeks and I wasn’t able to take in the amount of food / mini meals my stomach usually tolerates.

I survived on dry crackers and no fluids for the first 2 days but by the third day

My body was at the peak of war

Anything orally caused an uproar

I was trapped in a bout of overpowering and intractable nausea that made it difficult to focus on anything else. Headphones with a soothing playlist and peppermint suckers to distract my mind from the unpleasantness.

One more attempt at anti-sickness medication but to no avail. A violent bout of vomiting began. Whatever little remnants had been in my stomach from the previous days was emptied out. No medication stayed down. Not even the anti-sickness meds. Nothing oral.

Back and forth from bed to the toilet, pillow to a sick dish, feeling knackered, I fell asleep during the early hours of the morning but was abruptly awoken few hours later with breathing difficulty and my heart jumping wildly.

I can’t shout for help or turn over from one side to another, let alone sit up

What’s happening

My Lifeline emergency button to the rescue. I hadn’t used the watch for a while so it stirred immediate panic.

Within seconds mom sprinted to the room alarmed, and realised I needed immediate intervention or else I’d soon be unresponsive. It was not a normal POTS syncope I am accustomed to having and the likeness of one that mostly resolves or restores normalcy by itself.

If it’s a POTS syncope, there are 3 main rules:

1) Someone will tilt my body to the side

2) Elevate legs to the highest it can go

3) Put salt under the tongue

My pulse rate then slows down and blood pressure is boosted. Trust me, I’ve walked with pulse rates at 175 and when I experienced cyanosis in hospital my pulse rate also jumped from 58 to 256

But.. This episode was completely different.

No exegeration whatsoever. I shouldn’t have to prove the severity of my condition and these crisis episodes to anyone like we’re often made to do. Sufficient for me was a witness watching over from above and a witness working in swift rational motion at my side…

It was the type of unconsciousness associated with extreme difficulty breathing and a heart that was not just pumping, but shaking around in a chaotic manner.

Mom rushed for monitors, and administered one dose of the cardiotonic pill. My pulse rate drummed at 233 and increased with harder thuds minute after minute with no signs of slowing down.

Breathe. It’s difficult to breathe. Help me breathe. Breathe. Breathe. It’s hard. Why is it so hard

Black, my surroundings are almost black. I’m dying. I think I’m dying. Pray. Black. I can’t seeeee

Mom studied medicine so although she didn’t continue until the end, she is well acquainted with medications and maintaining composure to act appropriately when I’m in danger.

Panic doesn’t obscure her mind, parental instinct comes to the fore and helps her ascertain I’m still in crisis mode; what appears to be or resembles V-Tach (Ventricular Tachycardia). She administers another dosage of the cardiotonic pill along with a strong dosage of sublingual magnesium, hopeful and fearful it might not be effective enough..

(Two cardiotonic pills per day is the maximum dosage prescribed for me. More can lead to internal bleeding. A decisive and alarming time since I don’t have a PCP who we can ring urgently or a hospital where I can be transfered to via an ambulance. Considering covid circumstances, we were also trying our best to avoid hospitals)

Alhamdulillah the second round of meds worked effectively into my system before I retched again and my heart rhythm slowly settled into its abnormally normal pattern over the next few hours while mom stayed at my side for observation thinking the likelihood of going into cardiac arrest was so high and frightening beyond words..

These complications are not very uncommon to Dysautonomia because certain types like mine involve acute respiratory failure or sudden cardiopulmonary arrest.

Hence, the crucial role of CPR (cardiopulmonary resuscitation). If a loved one has Dysautonomia, knowing this life saving technique is a requisite because cardiac arrest results from an electrical imbalance in the heart and Dysautonomia is everything to do with our body’s electrical system / activity.

We’re at particular risk of cardiac arrest during Gastroparesis flare-ups when vomiting becomes uncontrollable, electrolyte imbalances occur, dehydration sets in, ontop of isotonic hypovolemia and several other heart rhythm disorders I have stemming from Dys.

Never take the above situation for granted because a Dysautonomia body survives on fluids and electrolytes. When these 2 are ejected along with cardiovascular meds which are means of sustaining vital organ function, your body literally crashes!

I have no intravenous backup plan set accordingly in place when acute, temporarily oral failure occurs. The big question being: Intravenous saline and fluids are recommended as general symptom management on an intermittent basis for certain Dys cases, how then can the dire need for accessibility during a crisis still be denied?! The level of systematic failure is beyond comprehension but we will do what it takes to breakthrough!

Don’t underestimate the willpower of a fighter who’s efforts are coupled by fervent prayer…

أليس الله بكاف عبده

Even if perchance you go into crisis mode and the 2 dreaded words are shouted “Code Blue”

Forget not, your most-loving guardian, the taker and giver of life, one who is always with you

Two dreaded words

Swimming through these waves, many are isolating and unknown

But my beating heart knows, it doesn’t fight for survival alone

For its creator is omnipresent and fully aware, he hears, he sees

The myriad challenges attached to life with a complex disease