[ 04/04/2018 – WEDNESDAY ]
*Stares* from mom & dad
Me: Inquiring look?
They: You breathing extremely heavy???
*Wondering to myself*
Don’t usually feel like this. It’s true! Why am I breathing heavily with a Bipap device? This. Is. Weird!!!
Message to friends who recieve daily updates:
“Hey! Not much to say… But my heart’s struggling harder to pump… Im sitting with bipap on for over an hour, usually the fluid overload eases within 20 minutes max.
No exegeration whatsoever! Right now – honestly & truly feel like I could do with a type of cardiac pumping support machine.
It’s SO difficult to breathe!!
Tonight is weird. The word weird does not do a proper description but something is abnormal… Hope this passes”
*10 minutes later*
Body freezes! Lose focus – then black.
In the meantime dad attaches the oxygen pipe to the cpap pipe. Breathing then resumes an easier pattern. (We were advised to do this in certain instances)
Mom administers medication.
Regain my bearings slightly but utterly exhausted & somewhat disoriented.
In bed to sleep.
[ 05/04/2018 – THURSDAY ]
Begin with medication again. Go back to nap.
Check blood pressure? Staying low. Not going up. Meds again.
A while later.. no difference. Check blood pressure? Not going up enough.
No wonder I feel like this?!
Ate 2 dates, sucked (sidr) honey which is combined with black seed oil & drank Zam Zam..
Pressure raises!!!!! No longer dizzy.
Try to walk a few steps because I want to move around but any slight movement on days like today cause loads of symptoms to explode.
Being at peace requiring more sleep or simply resting the body a couple of hours more than an ordinary person was not something fun & attained immediately.. Initially it was difficult but i trained my mind to accept this fact.
During these times I direct my energies into other worthwhile beneficial pursuits.
Patience is tough at times but losing the rewards promised is worst.
Focusing on good activities that can be achieved whilst requiring extra bed rest makes time so fruitful that I’m actually grateful kismet brought me to these steps + tests to train & teach me different aspects of the broader picture in life.
Had it not been for these illnesses I would not have adventured on such a scope..
When the ocean darkens further..
When the ocean hauls you in deeper..
With gems which can only be found when hitting rock bottom.
I’ve never resurfaced empty handed.
[ 23:50 ]
Need the toilet. Switch on phone to see the time…
** WordPress notifications **
“Patient Worthy referrer.”
What??? I don’t recall attaching any such link??!
How did this get into the blog?
What’s going on??
Not making sense of my own thoughts.
Then a Messenger notification:
(Creative director of Dysautonomia Advocacy Foundation – DAF)
“I hope you are feeling better today…. May this bring a smile to your face!
Ainsley is the founder of DAF. She said “please pass on my prayers for healing & hope that her symptoms ease. Pass on my support & backbone as she writes”
(Patient worthy are DAFS partners)
Kara: I only supplied PW with the information you sent (when volunteering).
A hollywood writer who works with them wrote your story for you & the rest of us. So they sent it to me & I approved it.
Whilst opening the link;
Astonishment grips my eyes
A startling mesmerizing surprise
As realisation dawns!
NOT to have my story broadcasted everywhere!!!
NOT TO BOAST.
Only, the feeling of pure happiness to have my support system fortified by a dysautonomia advocacy foundation.
Making me feel less alone having a larger team of people out there believing, understanding, assisting & recognizing my condition when living in a province where you’re assumed & scoffed at to be a hypochondriac amongst all sorts of other names…
Besides the comfort & solace sought in my Lord knowing that I am in his sole care.
A post was thereby made out of the article which introduces me as a part of their patient members..
I did not request my story to be showcased. Never had I thought it would be featured somewhere!
Sheer kindness placed in the souls of Kara & her team as a surprise knowing my cardiac condition is deteriorating with the passing of time.
It would be the height of ingratitude not to acknowledge the sincere efforts & goodness shining from these golden souls.
I am extremely humbled & in total awe regarding the manner in which the following article was compiled & presented…
“Whoever cannot be grateful to mankind, cannot be thankful to his creator”
🔹Ainsley Glenn – Founding director of DAF
🔹Vanessa Matelski – @potsiespoons – fellow patient member
🔹Every member of the team
🔹& patient worthy…
I express heartfelt appreciation to each 1 of you who played a role in the compilation.
Thank you for accepting me to be a part of your wonderful team.
Words do no justice, but within me your voice of support “echoes” miles – beyond countries & continents.
Thank you so much for supporting this blog & spreading my experiences.
Thank you for unexpectedly cheering me on the hardest of days.
Thank you for making the battle easier.
It means more than just a lot!
Your efforts create unthought effects!!
Immense delight displayed itself on the faces of grand uncle’s & aunt’s who were here to share these priceless moments.
Last but not least, to all the sincere people out there who support me unconditionally…
The people who prompted the writing of this blog & journals…
The main source of medical info from USA who is there to assist at every urgent message…
Or just to hear & read lots of rantings sometimes 😂🙈
Family, friends (& past students) whichever part of the world you may be…
On behalf of myself, family & friends;
FOR BEING AT MY SIDE
BE IT HIGH, OR LOW TIDE!!
Peace, blessings, light & love ✨