Being a rare voice ambassador who’s living for 5 years with Dysautonomia, although my neurologist is on the further end of South Africa, I am extremely grateful for having recieved the main diagnosis along with some of its other comorbid ones at around two years after the onset of my symptoms – instead of the average 6 year torturous wait!
Speaking now from a different angle – there is one point I’d like to add on which many concur with me:
Although only meant with good intent, it’s preferred not to try and press hard motivation of becoming well or being cured ‘soon’, because our bodies follow a different pattern from ‘get well soon’. So too much of indefinite assurance appears hollow and doesn’t do much good other than add more pressure and confusion to their mental turmoil.
Please don’t misinterpret this implication.
I have an unshakeable conviction in the miraculous power of كن فيكون – “be and it will be”
But sometimes we pray for one thing (example a cure) while there might be an entirely different plan penned out for us.
So it doesn’t mean the person’s personal level of faith is defective or they’re not supplicating strong enough, hence these are the reasons for them not becoming well. These are honestly some dim-witted notions.
On a more realistic note; based on the underlying root, source, or origin such as genetics etc, the majority of us with Dysautonomia can testify that this condition doesn’t simply settle soon or dissappear overnight.
Like I’ve repeatedly mentioned in the past, for me, the only option going forward was to adapt and build a new foundation of normal.
So what each patient wants to hear will most likely differ, but I know many alike myself would’ve like to be told or feel it appropriate to assure a new, muddled, or frazzled patient with words along the following lines:
“You might have to live with this illness lifelong or not. Humans can predict – but fate can contradict. If it becomes the first of the two possibilities, figuring how to swim through the waves is very challenging during the initial stages. But as time goes by, once a network of support is formed, once you find a sincere crew and are able to relate with others online…
You are now on a slow but steady track of progress in understanding your body.. Symptoms will stay, remain the same, improve, reduce, or progress, but the pieces will fit and to counterbalance everything becomes easier!
In the assuasive words of Dr Glen Cook:
“Hope is not lost”
Once the grieving phase of loss is over and suitable medical guidance is recieved, management techniques improve, thereby balancing symptoms under more effective control. We gain a stronger hold which empowers us to seek out newfangled opportunities and invent a satisfying purposeful life.
Owning a new normal is accomplished once we are rescued from the muddiness and have people to guide us along the process of managing each bodily systems overlapping dysfunction.
Then only can one proclaim with full confidence: “I’ve got dys and I can do it”
Im order to build the foundation of our new normal, we require the correct materials and tools. We have to put our hands on whatever resources are available to our advantage and educate ourselves as much as we possibly can. The learning aspect is ageless.
Medical school doesn’t educate its pupils regarding the sciences of autonomics. It’s a systematic failure. So the responsibility falls on us to initiate a much needed change of approach if we wish to see a revolution of development whereby experts are trained to identify these illnesses for what they are.
I quote a few appreciated words by Dr Howard Snapper:
“Do not underestimate the patient. The patient is not making up these symptoms. Sometimes it is anxiety, but anxiety is the less common of causes.”
“You have to have patience doing what you do“
Fighting for awareness has become our #Mission #Vision #Action
Until the last of the waves on my ocean…
The main reason of beginning with the above is to emphasize the importance of reading and listening to a load of invaluable resources attached below.
Patients please listen to the interviews conducted and take notes if possible. It will aid you to advocate for yourself on an advanced academic level.
Drs in whichever field you belong or specialize, I trust you have pledged sincere allegiance to the hippocratic oath, and thereby appeal that you enlighten yourselves too because this information is not reserved to neurologists. Remember; patients with autonomic dysfunction require an interdisciplinary team.
A byword:
“Eh, we like to collect em all” 😂😂
YOUTUBE CHANNELS:
Please subscribe. Watch the latest weekly interviews and seminars uploaded on
The Dysautonomia Project
Dysautonomia International
RESEARCH ORGANIZATIONS AND CLINICS:
We keep ourselves up to date with the two above and also have:
Dysautonomia clinic Williamsville New York
Dysautonomia Advocacy Foundation
Dysautonomia Support Network
I AM ACQUAINTED WITH THE FOLLOWING EXTRAORDINARY EXPERTS IN AUTONOMIC MEDICINE:
Dr David S. Goldstein
Dr David Robertson
Dr Charles R. Thompson
Dr Glen Cook
Dr Satish Raj
Dr Kamal Chemali
Dr Howard Snapper
Dr Brent Goodman
Dr Paola Sandroni
BOOKS:
The Dysautonomia Project book like I mentioned in chapter 235
https://kayborninmay.wordpress.com/2020/06/05/235-a-detailed-visual-of-the-invisible-2-2/
is available in SA via @takealotcom.
I am thrilled beyond words to see the latest developments with the aforementioned top-notch experts. Links are included below with hope these resources will be embraced, treasured, and circulated.
Thank you to all the pioneers for your collective efforts in making the information accessible to all. Thank you for granting us a platform! Thank you for the unwavering stand in furthering research! Thank you for the brilliant collaborations!
It means more than words can string together. In a country that is very far from your scholarly level I am deeply moved by the insightful discussions.
Ultimately, our aim is one. To ease this lifelong battle for patients and their loved ones, as well as enable them to succeed their attempts at living beyond the parameters of a multi-systemic and complex condition, on which there is widespread global ignorance.
May the Almighty accept, protect, and preserve our efforts. May our mission continue the ripple effects of change for all who are suffering. Aameen 💙
Swimming Through The Waves 