I am often asked why does it take “so long” to get started or complete an order, or why does the customer have to place it a good period of time in advance if required on a specific date / deadline…
Another notion also needs to be abolished.
The notion that chronically people lay in bed the whole day, have all the time in the world or do nothing else.
Rest is necessary! Extra is required after going out or doing tasks. Not doing anything will lead to deconditioning. Balance is vital.
So before I give you a glimpse into an overall day with my illnesses.. There are 2 keypoints to concentrate on here:
1) Energy levels
(battery analogy)
2) Time constraints
(fitting in all the treatments we need to do, as well as “live portions of life”)
Our energies are limited and thus have to be counted, protected, reserved and spent carefully.
Cut out toxicity as far as you can ❌
(Found a cute pic to illustrate my message)
We have to be conscious and vigilant of the things or people that are only a source of draining our battery life and don’t provide any sort of recharging (upliftment)
This includes:
⚠️ Company
(doesn’t imply to being in someone’s presence only. Online time counts as well)
Be cautious of the friends or people you keep and let in your circle. If you feel more deflated and your mood spirals low in someone’s company, it should send a message.
Your heart will sense and steer you in the correct direction. This one clicks / This one doesn’t / This one is shady.
If you’re a highly intuitive person you will just know!
Alhamdulillah I didn’t go out in search of friends who can understand or click with me. Instead, the director of the waves tossed each one to me in mysterious ways.
We speak the same soul language even in silence. When no one else around can figure out my lack of speech / noise.. They are able to interpret the cries or signal hidden in silence.
(Spend a lot of time. Not allll your time)
⚠️ Time utilized on social media / online platforms..
I don’t follow pages or people that hold no current relevance in my life. Example, normal people’s food recipes etc. Exit all such groups.
I’m also selective with regards to chronic illness accounts and the information I obtain therefrom. I choose ones that are truly worth all my time.
On the Instagram highlight category, I’ve added a section titled: “My fav accounts”.. There’s a combination of other fighters, Dr’s, psychologists etc
Being mindful of the time I generally spend on the phone and take frequent, little, periodic breaks between each post, chapter, or chat etc
When spending quality time with family or visitors I put the phone on airplane mode or leave it aside on silent. (It stays on silent most of the time)
While among people, I only use it if necessary – expecting an urgent message or need to confirm plans of something etc. A matter that requires an immediate response and cannot be delayed.
It was the noble practice of Prophet Muhammad (peace and stations be upon him), if someone spoke to him or vice versa, he not only turned his face towards the person, but turned his entire blessed body to give the person full attention.
In the fast paced and advanced era we live in, these ethics surrounding social conduct are dissipating, & often becomes a major cause of conflict in the home or workplace.
Of course if someone is spending longer time or sleeping over at my home, I cannot chat for long periods due to my cardiopulmonary condition, so either I stop talking and listen to the person, or we converse by means of writing on a mini white board, text each other, sit in silence, or catch up on phone things.
No offence is taken because there’s understanding involved.
But if a person doesn’t have a medical condition that restricts speaking, being glued to the screen unnecessarily and staying muted while in the presence of another, forgetting they seek your company, can come across as hurtful. The person might feel their presence does not hold much importance.
All these fine points can either make or break a relationship.
Character has so many different branches…
⚠️ Improve the usage of energy efficiently..
Example, if you can shop online, it’s a lot easier than having to go out every single time to the store, although I do enjoy some retail therapy from time to time 😝 If clothing is needed, some things need to be fitted on while in store.
⚠️ React / respond to the type of remarks / comments / that are only worth your time.
Let the snide ones just be..
Entrust it over to the Almighty.
(On the other hand, if we cannot manage responding to the good ones, it doesn’t mean it’s not worth our time. We are most likely not managing to keep up)
You cannot control everyone’s mindset or alter their perceptions if they’re committed to misunderstanding your situation or point of view.
Do your best. Leave the rest.
⚠️ Work and service to humanity..
Please remember to first charge your battery to the maximum level possible, so you can give off your best performance. If your body has been neglected and fatigued as a result of giving away all your energy to others, your mental state of health will decline. The mind will not be able think clear & function well enough. Frustration & agitation will set in.
If you try to give off without taking care of yourself in between, resentment might also step in & a task you were doing with a pure intention can become spoilt.
(I don’t type posts when I’m utterly exhausted because it’ll be just a bunch of incoherent gibberish lol)
Our days are nothing alike the ordinary person, and although each persons intensity of Dysautonomia is different.. We cannot be equated or expected to function and give off the same amount of work time like a normal individual.
A sense of self worth = self care = physical and mental health..
The mind and body are in continuous communication. This type of connection cannot be detached. What affects one, inevitably impacts the other…
Be smart and selective..
Prioritize..
Don’t deplete your precious energy in matters of no real benefit..
Make your time and energy an investment.
Even if that means taking the extra nap or rest you require! Switching off everything to unplug or simply doing what needs to be done for you….
Just like any machine or car needs consistent maintenance… How then can we think or expect any less of this uniquely fashioned body…
(Here are 2 posts that were published in relation to similar aspects of balance, boundaries, self care, and a brief rundown of my day at that stage)
https://kayborninmay.wordpress.com/2019/04/06/142-balance-and-pace/
https://kayborninmay.wordpress.com/2019/05/02/151-nourish-flourish-accomplish/
Swimming Through The Waves 