Managing my rare disease isn’t just a science, it’s an art!
And this is the final part of my techniques
< THIRTEEN >
Were my second discovery after entering the chronic sphere as a complete foreigner
Though, with the alternation of tides I then became a foreigner to normality lol..
In terms of gaining knowledge regarding a suspected or confirmed illness, joining groups I felt comfortable in helped me survive.
And shoot ammunition via world class training. Lol
Depending on the type of group, apart from local groups (there is only 1 South African dysautonomia group)..
I benefited from interacting on international groups because there are people from any country imagined. All these experiences collected & discussed on a broader level enlightened me regarding basic principles majority of which, Gauteng “specialists” are unaware.
I’ve always been gunned down with “oh so you googled it”
No Sir / Madam! I’ve learnt it first hand from those who know every trick in the field itself.
Support groups assisted me to understand everything my confirmed illnesses involve.. Definement of:
4) unheard of.
The quizzical, dumbfounded stares recieved in return of asking questions “a patient shouldn’t simply know” & some they themselves do not know, would amuse me.
If you’re new & thinking of joining, here are a few tips:
Every group has set rules. No one is allowed to promote medications, cures etc.
We’re allowed to discuss the effects of meds, pros & cons, rant away feeling safe & unjudged..
Investigate the type you’re in. Sometimes bickering of opinions may ensue but administrators do a good job at handling it.
Stay away from debative discussions, no one needs to seek additional negativity.
Become proactive in the beneficial ones.
Politely withdraw from any felt unsuitable after joining.
Set usage limits.
Offer advice where possible.
Seek opinions when confused.
When pursuing treatments / medication, always consult from those in the same (similar) condition prior to finalizing a decision. Goodness will then be the only result (even if bad occurs in the process)
(and praying for guidance)
After wandering aimlessly like a lost lamb in confusion unsure in which direction I’m heading or should head…
Support groups were not just magical revivals, but a life saver for my physical & emotional health. The friendships that evolved therefrom converted any bitterness into sweetness.
< FOURTEEN >
Find a suitable passion that gives you motivation
I cannot agree more with the quote below, knowing the evolvement of my divertion onto new means of attaining such a meaningful life.
We don’t look back, instead we focus ahead.
As they say: Different strokes for different folks
✒️ Calligraphy is my therapy.
No pictures posted here but if you’d like to see or order, kindly contact me privately.
An inherent passion indicated previously in 6 chapters. It did not materialize when I desired, but when my lord knew was perfect!
Effort from my side also played a major rule. If my creator allowed me to sit back & sorrowfully watch life swiftly advancing, there would be no lemonade for myself to drink, neither extra to share.
An added keypoint is: We are all blessed different.
Feed your own uniqueness & give yourself credit for every accomplishment.
There is no time for competition!
Beautifully said by a sincere & dear friend regarding art but a general life rule:
< FOURTEEN >
This point was inspired by Kara La France 💖💙
Creating / keeping a happy space
About four years ago I did a book the artists way with a Facebook live. And the woman who wrote the book, talks about surrounding yourself with the things that bring you joy, images of your past which included images of yourself and your art.
So I’m working on making the room colorful. It is surrounded by my nieces art. Currently only the seven-year-old sent me are on the regular. And I find myself collecting colorful pretty things by other artists. It’s quite an inspiring space when clean lol
A splash or added dash of color creates a vibrant ambience.
I’ve created happy spots in my room (according to my situation)
Lamely joked with a friend 3 weeks back saying: As you get “hug in a mug”, I have a mini office in a bedroom. Lol.
If someone has an extra spare room that could be transformed into an idea as this, keeping it seperate is great.
Create sunshine, rainbows & stars where there aren’t ☀️⭐🌈 in a room you’re confined.
According to means.
It can be achieved with cost efficient methods.
I have a section in my cupboard where I stuck all the letters & cards given, each one noteworthy even if it’s not “fancy”.
(On a hilarious note my little niece followed the lead by sticking papers of her grade R school art inside her cupboard doors & amusingly stuck them with saliva when her prestik finished. Lolllllll.)
Beautiful memories of the troops who reinforce us to shoot.
Whilst discussing this with a friend, she found an image 👇
** The lights hung here are a warm glow.. Not LED that is unsuitable for people with migraines & photophobia – light sensitivity..
Other ideas are “Pin It Boards”. Attaching uplifiting quotes that could serve as reminders.
Sometimes when we’re too accustomed to looking at something, the message becomes immune so a change is good – as in a different quote every few days, but repetition has a stronger effect.
Basically, see what works for you.
< FIFTEEN >
Aromatherapy perfume rollers, diffusers & burners.
Aromatherapy contains a vast array of healing properties.
Burners are cosy in winter. Diffusers are best in summer because it cools the air whilst rejuvenating the mind & body. Also a safer option with kids.
Place one in your bedroom, office or workspace… I move it around from the places I spend most of my time or another spot of retreat to unwind.
My aromatherapist blends euphoric perfumes.
Mentioned about her here
Normal “chemical” perfumes, no matter the name brand or price tag, can never compare.
These 3 bottles:
1) Rose – a scent that wafts through the nose like a freshly bathed cuddly baby lol
3) Spring time
I carry them in my handbag when moving around to roll on anytime if need be.
There is another wonderful lady who has a business titled millennioilrollers
She has a vast selection of individual blends or kits for all issues, be it sleeping, calming or emergency.
But trust me. These oils work in a fantabulous manner without exegeration!!! Befittingly categorized under the term Magical revivals.
An example from her collection is an intriguing anxiety blend. Calmness in a bottle.
Give it a shot if possible!
The wavelengths of adaptive & tackling mechanisms differ from one individual to another
On a final note note I hereby conclude the composition of a list describing how I punch with an iron fist, from 31 months of a quest for my new calling…
(If I recall or discover additional points to add on in the future, another chapter will be created. God willing.)
Whatever I was afforded the opportunity to achieve, stemmed from the moments I drearingly forced myself to fly in whichever direction the wind steered, despite brief declines of enthusiasm...
Yes! There were times where I was demotivated (& I remind others, there is no need to feel bad for feeling as such)
There were times where I scram with induced raging anger & hands thrown up in the air, that “I give up fighting for required recognition of treatment management”
Momentarily I did because exhaustion had swiveled rock bottom, killing my spirit. But deep within I knew
I would, as always, once again
Rebuild & regain momentum.
The best option chosen.
May the Magical Revival series boost at least 1 persons will for survival
Although difficult, the higher we are made to climb, the better from ourselves & the world we will find 💎