On hubby's research he thought we needed a heart rate monitor to more accurately record around moments of tachycardia, orthostatic intolerance, intense fatigue, moments after doing basic things to see what the energy costs were. I admit I was somewhat interested. Not being great at pacing, I normally try to get through the necessary living tasks, e.g. make & eat food, drink ample water, bathroom and if I have a good day something on top of that, and then see where things end up. So it would be good to have more accurate readings, a better sense when I need to take breaks and how useful breaks are.
So after a couple weeks of taking readings at intervals and completing basic tasks I can officially say even simple resting daily tasks like making breakfast easily bring me over 130bpm (the maximum alert boundary where a beeping alert would sound). The first few days I was easily able to find when it would start beeping as making toast, feeding the cat, bathing, standing in a park, going to an appointment all would make the heart rate monitor go up above 140, even above 150. I would put it on, try to stabilize my hand for a clear reading see the pulse reading form regular bumps and the beeping alarm would be going. I made a joke because of the meme from Dragon Ball Z where one of the antagonists, Vegeta, exclaims the power level of another character, Goku, is over 9000, and I was regularly getting over 9000 beats per hour. But hubby is more distressed by the results. It is a clear indication of what is occurring, sitting & resting I am often over 110 bpm. Even standing meditating can easily bring the heart rate over 130 bpm. But evidence of this and the orthostatic issues are not a good sign for hubby. Hubby would exclaim "It is not like cricket, it is like golf".
I have started recording some readings when my hands are not as bad & the screen can be seen on the camera by taking a photo with my phone. There often is a weird issue where the monitor screen would not show on camera due the light & frequency so some moments I try to capture out of sunlight. If I did not have the photos the doctors would not believe me if I simply wrote it down or reported to them. A photo will also show the other screen readings including the oxygen readings. In fact the monitor will beep warning alerts so often that I am now used to the sound and it is just another part of the day. Hubby would be more used to me taking readings too if it was not for that "f'in beeping alarm". I take note of moments that when I go above 150 bpm I should sit down for a bit to bring the heart rate down otherwise the next day is awful. Having a hot drink helps as well, perhaps because it reduces mucus in the breathing paths & reduces the breathing chest pain a bit. Days after I got up above 170 bpm it took a while to recover. I was often hitting 160 bpm plus after even rest breaks or days after. My physical ability was shot, with orthostatic issues, fevers, headaches, breathing issues, stomach & bowel issues so it was already noticeable without the heart rate monitor telling me it was taking time to recover from a period of 170+ bpm.
Lesson learned take regular readings, walk with a cane, sit down to rest often and try to avoid staying at 160+ bpm even for a few minutes. I try to even just have a standing heart rate below 130 bpm, the mark of hubby's "infernal beeping alarm", but have not been successful in that yet, (poor hubby). As I said I don't mind the readings, I have known the orthostatic issues are a bit of a bugger when doing basic tasks and have felt my heart rate when meditating so the readings are nothing new to me. I take readings to provide data for the doctor but I am not fussed about them. Sure the alarm may bother hubby but it is what it is. After all you probably would not expect someone as calm as me to have heart rate readings like this but in the end they are a part of ME & tachycardia. I have managed to also find some of the other alert boundaries as well (by accident when they occur). I got a low blood oxygen reading a few times of 88 %SpO2, which set off the alarm but with further readings found the low blood oxygen alert beeping starts from 93 %SpO2 and under, (94+ %SpO2 has no alarm). However thankfully most of the readings show a blood oxygen level above 95 %SpO2 so just as well. I have also compared the readings against the heart rate monitor the doctors and hospitals use and they are pretty similar, (same method of measuring and pretty close to same readings except the pulse graphic can vary in the display format).
I am here living with ME, which produces worse physical condition with exercise and now have a heart rate monitor that often sounds its warning beeping alarm. At best I have to hope my heart in the end follows my head and calms down. I am seeing such a disconnect between them, which is curious but not uncommon for people with serious chronic illness so it is not a unique position. The issues with exercise though often are annoying, a punishment my body enforces on me even for going walking, yoga, & cardio. Where it brings on a flare that lasts for days, a goat to the groin, with immune, gut, neurological & further heart issues. The following days after are a crash and long term the results are worse... which makes this far more annoying than something like depression (where exercise, even graded therapy helps). Myself and hubby cannot medically improve our chronic diseases with exercise but we love going out and doing things none the less. I am now medically more affected by outings but there is still a level I try to push myself even when stuck at home. People who have a chronic illness or serious heart issues often cannot think themselves cured but some days mindfulness does help deal with the effects from the illness and light stretches & yoga help prevent muscle wasting.
Even writing this my heart rate has dropped from the 'making tea heart rate' of 130 bpm to the lying in bed rate of 105 bpm. A very good day indeed. Although strangely the very few times under 95 bpm I feel like I am passing out & very faint, it does not even drop this low when I am asleep most nights, so between 100-120 bpm is probably a good baseline for light writing & cognitive function, (at the moment for me). Many people can do light exercise, or even stand and their heart rate does not race or produce chest pains but in the end I need to play the cards I have been dealt this round. I guess I do need to take more rest breaks instead of pushing to try to do more basic life things but in the end I have to continue on a path to recovery which involves a level of effort to keep going. My life is like a calm pond already and any pebbles that are thrown my way just sink to the bottom with light ripples quickly returning to the pond's mirror stillness. The pebbles pass through me and they are simply a part of the bottom floor of life. It is good to have the record to present to medical professionals and it is a good measure that offers more medical evidence to search for a solution. However in the end it is just more cards to the pile, more pebbles in the pond. Get through this round and maybe the cards dealt in next round will be better.
An appropriate song for this, (in many ways)
On a warm summer's eve
On a train bound for nowhere
I met up with the gambler
We were both too tired to sleep
So we took turns a-starin'
Out the window at the darkness
The boredom overtook us,
And he began to speak
He said, "Son, I've made a life
Out of readin' people's faces
Knowin' what the cards were
By the way they held their eyes
So if you don't mind me sayin'
I can see you're out of aces
For a taste of your whiskey
I'll give you some advice"
So I handed him my bottle
And he drank down my last swallow
Then he bummed a cigarette
And asked me for a light
And the night got deathly quiet
And his faced lost all expression
He said, "If you're gonna play the game, boy
You gotta learn to play it right
You've got to know when to hold 'em
Know when to fold 'em
Know when to walk away
And know when to run
You never count your money
When you're sittin' at the table
There'll be time enough for countin'
When the dealin's done
Every gambler knows
That the secret to survivin'
Is knowin' what to throw away
And knowin' what to keep
'Cause every hand's a winner
And every hand's a loser
And the best that you can hope for is to die
in your sleep
And when he finished speakin'
He turned back toward the window
Crushed out his cigarette
And faded off to sleep
And somewhere in the darkness
The gambler he broke even
But in his final words
I found an ace that I could keep
You've got to know when to hold 'em
Know when to fold 'em
Know when to walk away
And know when to run
You never count your money
When you're sittin' at the table
There'll be time enough for countin'
When the dealin's done
You've got to know when to hold 'em (when to hold 'em)
Know when to fold 'em (when to fold 'em)
Know when to walk away
And know when to run
You never count your money
When you're sittin' at the table
There'll be time enough for countin'
When the dealin's done
You've got to know when to hold 'em
Know when to fold 'em
Know when to walk away
And know when to run
You never count your money
When you're sittin' at the table
There'll be time enough for countin'
When the dealin's done
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