My usable hours are slightly different compare to Sarah’s. The days I manage to stay awake after dawn and nap later, I have 3 usable hours..
Most days the afternoon barely counts. By the time I’m steady to move around on, it’s only about 3pm or past..
Days when the fluids and meds kick in earlier, are countable.
My nights have approximately 4-5 hours depending on random bouts of fog that coils around my brain in between.. Then i end up with less hours..
So in an estimated total of 7 minus hours, I have to fit in ALL the aforementioned tasks of self care + work…
By the evening i cannot wait to crash into bed… Sometimes, keeping my eyes open from 7pm onwards is one of the greatest tasks. More so, if i had a shower / appointment / went out somewhere / had company over.
Perhaps reading this 3 part series provides a better idea as to why orders take longer than a normal healthy persons business. Usually names dont take long if i have all the tools at hand. But the more detail, the longer it will take. For instance, if I have to compose a poem from scratch and then craft out. But customers testify that it’s totally worth their wait ❣️
Let’s not forget the days where my body crashes and refuses to do anything. Those include: Migraines or few days of being “on the go” in consequence. Sometimes im advised by my PT or chiro not to do writing or typing for a while so the nerves and muscles can relax…
Each day is a continuous fight between your mind & body. Having a list of tasks to do, and then finding peace with being able to accomplish a few.
If you find yourself experiencing rapid burn outs at frequent rates, your list plan most likely needs to be evaluated and prioritized again.
All good things take time, thought and effort to put the plan into action. A house is not built overnight. A rose doesn’t bud in one day. A child doesn’t walk from birth. There’s always a process of steps involved. Likewise, with writing, in the form of calligraphy or blogging.
I always remind customers to let me know a good time in advance if their order is due on a deadline. If the required time cannot be met, i give them options so undue stress is not added onto my body.
Writing is thoroughly enjoyed but there’s also a lot of “braining” involved so it can become exhausting…
The foremost principle is moderation. After one chapter is published, I take a brief break to replenish before resuming the next.
Usually my hands need the most break because typing for long periods puts extra strain on damaged nerves, and the electric-like shocks are triggered / exacerbated.
Dizziness / pre-syncope / angina overtakes without forewarning signs. These episodes strike at unforseen moments.
Chronic illness makes daily living unpredictable
It’s not that we as individuals by nature, are unreliable
I cannot promise to meet up somewhere or attend a function. I promise to try my best, but dont know what my body will decide on the actual day or time as much as my mind is willing to be present at the event.
So it’s always appreciated when we are included in an invite, but are not pressured to attend.
Recently an aunt invited for us lunch to meet family from abroad. But it happened to be during a major flare. So I really appreciated it when she phrased her invite with the following words:
You and mum are invited for lunch. If you feel well, msg “…….” and she will come fetch you
Choice of words truly matter when addressing or conversing with a loved one who has a chronic illness.
Its so crucial for healthy peers to realise that as much as we love and try to keep up with the lives of our near and dear ones. Its not always possible.
There’ll be times where we have sufficient energy and be fully up to date. And other times where it’s impossible.
Please know;
If we cancel or postpone plans
If we chat less or not at all
If we don’t respond
If we haven‘t checked in
If we “seem distant”
If we don’t show up somewhere
It’s NOT personal!
We’re not being rude
We’re not breaking relationships
We’re not being self centered
We’re not showing a “don’t care about you” attitude
In fact we think about you and care way more than people realise we do, but sometimes everything becomes a huge juggle. Especially chronically ill parents.
Our bodies are different and unique in their own sense. Personally. I cannot be hastened into doing anything because with my cardiopulmonary condition I become breathless quicker.
If someone rushes me, my nervous system automatically accelerates faster than it usually is, and pre-syncope / angina symptoms are triggered.
So family members and friends apply cautiousness, even when it comes to driving, breaking bad news, etc
Messages also tend to pile up – 10, 12 +-… At the moment my whatsapp is not so bad. Although, im pretty sure there are opened chats unanswered 🙈
Sometimes so many come in at once. I actually forget there’s messages that need a response because it falls down lower on the list.. I usually remind people to please “tinkle” if it requires an urgent response. I don’t answer calls but a ring or 2 serves the purpose.
With the remainder, I then scroll down and respond at my own pace.
Those who care to learn respect our boundaries & accept us irrespective of our limitations or abilities. They treasure us for who we are as individuals at heart. Pure love is not based solely on a person’s ability or lack thereof.
Chronically ill individuals have to work a lot on freeing themselves from guilt & blame for matters that are beyond control. We’re all doing the best we can.
Its okay if you’re an inconsistent friend
The ones who care wont make a relationship end
In order for various types of behaviors to be understood, its important that we make society aware of the impact a biological illness can have on your mental wellness, or even a psychologically induced illness (conversion disorder) for that matter.
But I think it’ll be best to elaborate more on this topic when discussing medical trauma at greater length in the Chronicles Of Survival…
Before we delve into the new series, there are long awaited logical answers I have finally recieved which necessitate a string of updates..
Swimming Through The Waves 