I will try to explain this difference in hopes of informing those whom have loved ones with chronic illness/ailments/disability of some form. In doing so, I hope I can truly express how time is experienced for all people who live in this "chronic instability timezone".
For those who were suddenly struck with the woes of illness, whereas before you seemed to be lively, active, and pretty much perfectly "normal". The lifestyle, the people, the energy and time it takes to do ordinary things is completely affected by the illness. Instinctively, you will want to fight this harsh truth and remain the person you once thought people viewed you as, or, the person you've always viewed yourself as. I have been here and I am freely claiming I am OVER THAT. No one wants to admit that something as simple and routine as taking a shower, has went from only needing 5-10 minutes to at best 35 minutes. It is depressing to realize you cannot do the average healthcare for yourself within what is considered "normal" timing anymore.
I HAVE FOUND THAT THE BEST WAY OVER THIS WEAKENING REALIZATION IS, ACKNOWLEDGEMENT AND SURRENDER. With a compassionate heart I mean acknowledgement by yourself first, your loved ones and friends second; It is okay that you no longer have the capacity to live your life on the structured timing of society. I had to be honest and kind with myself ( i.e. no self-criticism, no self-shaming, no self-blame, etc.) about my capabilities within a given amount of time to even ease the feeling of depression and anxiety from not being "on time". Then comes that surrender part, sounds like a defeated term to use, right? NO. I mean surrender to the urge to tell people: "That is not enough time for me", "That is not a good time of the day for me", "I won't be able to make it there by that time", "I DON'T KNOW IF I CAN COMMIT TO THAT TIMING". There should be no need to explain why to people who truly care for you and deserve to be involved in your healing process/your everyday/your life; Unfortunately, some people truly just do not understand why. You seem like the same person they have always known and you look unaffected by your illness at "present time", so why wouldn't you be able to do as you once did before. I will try my best to explain for those whom are having trouble expressing this to others (link them to this source if you like 🤷🏽♀️).
How you see me now, may not be how I would seem later. As a person with an unpredictable disease, I can assure you that I may be able to seem perfectly normal for one moment; Literally, the next moment I could be completely unrecognizably disoriented. This can be without any known trigger to myself or others. Currently, if I smell the scent of a cigarette (i.e. someone actively smoking, someone's clothes smell like it, etc.) I become so disoriented I loose control of my legs, my awareness of where my body is, my vision gets blurry, I'm super tingly all over and it becomes difficult to breathe. This is very debilitating because it happens so suddenly, even by a cigarette smoker just walking pass me. Please don't judge a person's level of possible disablement on how you see them "usually" or at one given moment.
I am not in full conscious control of my body. Just think if you were not in full control of your body, would it not upset you for people to expect you to do things at the "normal pace". Of course everyone has Will Power, but, we have to carefully choose how much energy we are willing to exert into a task at the expense of having little to no energy for the following hour(s)-days. Yes, I can quickly run into a few stores and purchase a few things but it never fails that I am completely depleted of my energy when I get home. Sometimes I don't have the energy to bring the bags in from the car, or put food away in the kitchen (😮💨 "forget this ish, just let it melt"), I cannot walk straight, I cannot change out of my dirty outside clothes, or the ultimate overdo-it result I am fatigued for the next two or three days! Imagine that happening to you and all you did was get gas, six small grocery bags of food, and picked up medicine from your pharmacy.
Trying to fit into society's timing, causes me anxiety and stress. The main things known to cause flare up in illnesses, is the common daily issue for everyone. So anyone should be able to relate to this feeling, but, whereas your result is a crumby mood, ours is a physical restraint.
The list could go on and more personal even. But for the sake of saving you from having to listen to me talk about my lack of bowel movements, acid reflux/gassy reflex, insomnia, difficulty holding a toothbrush to clean my teeth, or the lack of strength to bathe myself
LETS JUST AGREE TO UNDERSTAND WHY.
If You have made it to the end of this rant, Thank you for truly attempting to understand the difficult life of another. If you are the person with that difficult life, understand that you have nothing to be ashamed of, embarrassed of, or sad about; Accept and acknowledge this is how things are for you now. This doesn't change your destination, you just have to pick a different route now. The 12 hour clock is a self-limiting belief system; So what if you're up at 3am cooking, doing laundry, taking a bath, or eating a meal? Honestly, it's your life, your experience, are you not going to utilize your energy you suddenly have available at 3am because society dictates people should be sleep? Live by your own body's timing, don't squander the chance to get something done because it's not the "norm". FORGET THAT! I DO WHAT I CAN, WHEN I CAN BECAUSE I NEVER KNOW WHEN I MAY GET THE ENERGY TO DO SO AGAIN!
