Simply put, there is no choice
Finding empathy and understanding
It is often only when a friend is sick with a really bad bug for a few days that they begin to question how I manage being forcibly stuck in bed. Simply put, there is no choice. I think one of the most frustrating things is having time but not having the physical or mental means to do anything with it. It is not just frustrating, or boring, it is simply cruel. You’re trapped in every sense of the word.
If I were to forgo talking about the physical suffering for now and just focus on the mental, cognitive difficulties I might perhaps be able to open you up to a whole other world of unfair injustice. We are so often sentenced to these lives behind four walls, in darkened rooms, physically unable to do anything about it and you would think that it would at the very least give us the option to use our minds to the nth degree. We’ve all the time in the world after all, right? But it just doesn’t work like that.
With chronic illness comes a whole host of symptoms and for me (as for many), with my M.E comes cognitive dysfunction, often described by patients as brain fog; because that is the constant state, a foggy-like brain. At the best of times it is that your mind is foggy and a bit forgetful, at the worst you have no idea what’s going on, you can be a danger to yourself, it causes fatigue induced dyslexia, memory loss and speech problems, just to name a few symptoms.
A cruel aspect of M.E
This is without talking about the impact that mental exertion can have on someone with M.E. For me simple conversations can cause me to crash, for my heart rate to sore and my blood pressure plummet and my speech to begin to slur. My words constantly become entangled and my memory recall a laughing stock. A least my loved ones and I can and do laugh, you have to! TV and reading can do the same, it is an overwhelming of the senses that for some reason causes our bodies to begin to shut down. For Post Exertional Malaise (PEM) to become a factor, migraines to set in and nausea to overwhelm me.
My loss of self
I’m lucky, so I’ve been told, it hurts when it comes from those closest to me. For how I long to have an ounce of the ability, the energy others have: the lives they lead. I discussed this here on my instagram support page @myillnessmythoughts and the response was overwhelming. When comments of this nature are made I don’t believe it’s meant out of malice (not always), purely a lack of understanding, of thought of what’s being said. Perhaps it’s only when you’ve lost everything that you truly learn the greatest things; a better appreciation of everything and a deeper compassion for others.
So I have all the time in the world. Somedays I feel the weight of that pushing down, crushing me, others I feel another wasted decade of my life passing me by.
Or I can choose to fill it with love
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