I’ve alluded to the topic of “living beyond” in many chapters before
However, due to enqueries, it is necessary to elaborate a little more
Those who know me already know my interests and the about routine I created.. According to my condition ths routine changes from time to time.
If you’ve read the Magical Revival series, some of the points mentioned therein are a fundamental part of my daily lifestyle. A few were incorporated and implemented after I was assisted in getting certain symptoms, just about manageable.
Chronic bodies are unpredictable & within nanoseconds to minutes, there can be an emergency or flare happening.
It is not possible to adhere to a structured routine every single day. Many topple off the calender but to be productive I plan out reminders per week. Whichever activity falls back is then rescheduled forward again.
In a different mode of living, my days are actually full!
Little by little, devise a scheme for your goals
Then trust the one who ultimately controls
Despite the challenges of our bodies physically and mentally, it’s recommended to do something different than the usual tasks.
Distractions also help especially when in pain. Albeit, it depends what type of pain as well. Pain usually intensifies at night so it can disrupt the bodys entire cycle and routine. Sometimes in the mornings we’re barely able to keep an eye open for long.
But for the times I am able to function in the morning, I do not sleep away after the morning prayer (before sunrise).
The hashtag #wakeupwednesday was inspired by @nhhpulmonaryrehab SA. We were requested to share our morning routines as a means of inspiration to one another..
Unless disrupted by other bodily issues or circumstances I commence by:
1) Awakening before sunrise to pray 🌄
2) Drink Talbinah (related in chapter 135)
3) Open blinds / curtains (and windows in summer – unless migraine)
4) Gratitude, meditation, recitals from a holy book 🧘♀️
5) Morning meds, diuretics etc.. 💊
6) A slow walk outside at my own pace for approximately 10 minutes depending on my body🚶♀️I try to push for maximum movement even if it means dragging my feet until my heart and lungs yell at their highest pitch, then I’m compelled to stop.
7) Journal work 📚 Participating in documentation of Dysautonomia cases
8) Set of stretches & exercises 💪
9) Snooze for +- 2 / 3 hours depending on how my night went.. 😴
10) Awake before 1pm & continue the to-do list on my calender… As daily activities are set and split 🗒️ by estimating my battery usage & rest duration between each chore.
Each morning we have an option:
1) To sleep beyond the required time and continue dreaming, or
2) Awake and work towards the fulfillment of those aspirations.
One of my aspirations is to see a firm foundation of awareness being built among society.
Although it’s often necessary to absorb ourselves additionally into a field of work, to attain certain results. Balance is important to ensure we don’t burn out completely.
As you move about and “race”
Please don’t forget to pace
Where I’ve been recently and where I am now.. Is not where I was in the beginning.
As time passes, the more knowledge we gain regarding our illnesses and the more help we recieve from healthcare professionals, the easier it is for us to strategize and manage ourselves.
Though some days… The most I am able to do is just breathe. I know it is my body’s way of communicating and saying.. Something is wrong. Perhaps you need to slow down. Perhaps you need to unplug. Perhaps something needs to be changed or added.
I search for ways to save on energy and time. For instance; I no longer shower in the morning because it is so taxing on my heart. The remainder of the day passes by in a blur. Dizzy. Breathless. Angina pain & disoriented from poor circulation.
My showers have been swopped to the evening so I can get into bed immediately thereafter and sleep away / rest. Time construction is vital. I am firm about leaving aside anyone or anything not worth my precious and limited energy.
And as the Almighty has promised – He does not place a weight upon us more than we can bear. I am in awe and humbled at his mercy of the many examples pertaining to this. One among them is not having the responsibility of a household. For my circumstances it is easier to cope.
I quoted this differently in chapter 114:
Each person is assigned a different type of battle
Proportionate to the strength within us to handle
Deep admiration to the moms and dads out there with chronic illness 🙌
Nonetheless, we need to reconsider the sentiments we share, and the values we instill or try to preach to people who are ill.
Despite my body being restricted and slow
I have been put where vibrancy can still flow
A fulfilling life continues
Just in different avenues
And on this note, today I conclude with an all time favorite message from a fellow warrior who’s story always entranced me.
A description from the derivative of her namesake; light – Claire Wineland
“We cannot keep teaching people who are sick that they need to be healthy before they can live their lives”
“Understanding the challenges you face with your illness, and then planning a life despite them. May be one of the healthiest decisions you will ever make”
– Lisa Copen
Your ability to adapt in unpleasant situations is the most powerful skill you can develop, specially when things go wrong or you’ve been treated unfairly.
– Arius Soltanfar
Living a life that you can be proud of is something you can control.
– Claire Wineland
We miss you 🌺🌷