I strongly suspect, people who do not know either chronic pain or disability rarely understand the difficulties of living with either, nor should they, and so you know, chronic pain is a disability at least from my viewpoint.
I live with both an unseen and a near-invisible disability, one is pain and it is the major one, the one that stopped me from working and throw me into the life of a jobless disabled person. The other is less problematic, mostly because the human spirit and mind can adapt to a lot so I adapted to live with an extreme weakness to my right arm and near-complete loss of any coherent use of my right hand and anything past the forearm really.
Seldom do I complain and even less are the days when I had enough, but this has changed of late. I do not know if it is the perpetual grinding of pain or the stupidity of people or the over-eagerness of close ones to help, but I am sure of my current and more regular “I’ve had enough” state of being.
When I am in pain over a certain threshold I become very withdrawn but also very short-tempered, so I usually dive into one of two types of activities. The first is a mindless succession of instructions to achieve something, LEGO building is ideal though it does nothing for the pain, it relieves the brain’s attention to it. The other is overwhelming the brain to the extent that it can no longer give any attention to the pain, it usually takes me two simultaneous activities to achieve such a state, a state that oddly resembles meditation.
But this post is not about my pain mitigation techniques, though I should do one some times in the future.
Today’s post is aimed at these kind souls that think they are helping by relieving us of some shores, for example sorting my draws. It looks neater, but I can not find anything anymore. Let’s not even mention, “let me help you to find what you are looking for”, even knowing the heart of that person is in the right place if I am battling both my pain and my complete lack of movement at that point, rage is all you are going to get.
Pain does that, irrational thought and rage, and possibly self petty for the fact that you used to be able to do this in your sleep.
It is often difficult to impossible to explain, there are moments in which I can rationalise everything down to, “I am not right in my mind right now, let it go” and there are moments where all I can muster is “I am tired of this, I’ve had enough” with all the rage that comes with it.
Of late, the latter seems the order of the day, today is no different but I live in the hope that tomorrow will be better.
All of this to explain to the “unaffected” and “healthy” that sometimes, don’t try to understand us, we don’t either. When we are like that, stay out of our way and let it pass. And I am certain it is not easy to watch, you may be surprised to know that we, the affected, are bystanders too, when the pain takes over we may as well be someone else because I can assure you we are not in complete control of our actions.