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Disability’s Rage

I am not always in possession of my own faculties and the resulting anger lashes out, mostly at my husband, whom I hope recognizes it is seldom personal.

I hate myself in these moments – not all of me – just the malfunctioning parts.

It happens when I overexert myself.  Systemic Exertion Intolerance Disease is the new name attributed to ME/CFS, and it is appropriate.  Even my brain suffers from exhaustion. th-2

I have been pushing myself extra hard lately – partly because I am tired of being tired, and partly because I have some things I need to get done – and the result for my brain is that it is losing ground.  I forget things, become confused easily, and cannot process information.

We have been prepping here for a yard sale.  That means making a lot of decisions.  Decisions involve executive functioning:  Is this object redundant? Can I see myself needing it down the road?  How much should I ask for it?  While these may seem like fairly straightforward questions, to the disabled mind they can be taxing.

Mid-afternoon my sister dropped by to help out.  Conversation was difficult as the words just would not come.  She took home a couple of things to try out in her own home.  Later, she texted me money for the items.

This is when it all fell apart.

I have never received money via texting before and my brain, instead of seeing a new learning opportunity, shut down.

“I can’t do this!” I bemoaned to my husband.  “Why would she do that to me?”

He tried to talk me through it.  My brain rebelled further.

“Can’t I just forward the text to you and you do it?”

“You can try, but I don’t think it works that way.”

Money, my panic was telling me, is suspended in space and you better hurry up and grab it!

th-1I tossed my phone aside, laid back and took some deep breaths.  It’s a technique I’ve learned when my muscles get in knots – better to breathe through the stress then try to conquer it.

Awareness of how to proceed floated to the surface.  I deposited the texted money to my account – not the right one – but I had received it, nevertheless.

My husband tried to talk to me about what I can do differently next time, but I hadn’t lost the combative edge yet.  He left me alone.

Sometimes, I just have to grasp the rage by the neck and wrestle it to the ground before it destroys us all.

“I got a lot done today,”  I said aloud.  “And I’m proud of myself for resolving that problem.”

“You’ve done very well,” my husband responded, re-entering the room.

I looked at this man, so brilliant and accomplished, and marvelled that he puts up with the lot of me.th-3

“I am happy, you know,” I tell him, “and excited about where our life is going.” I reach out a hand to him.

“I know you are,” he says taking my hand.  “I know you are.”

Neither of us speaks of concern or worry – it’s all been said before.  What if I never do get better?

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Categories: Chronic Illnes disability Health living with disability marriage ME/CFS relationship

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V.J. Knutson

Writer, avid reader, former educator, and proud grandmother, currently experiencing life through the lens of ME/CFS. Words are, and always have been, a lifeline. Some of the best adventures, I'm discovering, take place in the imagination.

9 replies

  1. ive been there, sort of. apropos to your post, another blogger just summed up in 15 paragraphs every trouble ive been having for my entire life. https://anonymouslyautistic.net/2016/10/10/world-mental-health-awareness-i-dont-want-awareness-i-want-acceptance/

    the part about spoons is good (and the part most relevant to your post i think.) when i read your posts, i often feel touched by them. they dont make me judge you, and they dont make me pity you. if i had to pick one word to describe the way it does feel, i might pick the word “love.” thats probably too strong a word, but other than that its probably a good fit.

    i always wish you well. i appreciate that youre here. i dont read all your posts– but i have read a handful or two, and i notice when they show in my reader. its probably the sincerity that does it. apart from the sincerity, the resolution of your posts is so high-definition. your life is carried so vividly into your posts, its almost like being there. that, plus the sincerity– i know the word, its “moved.”

    you share so beautifully, even the pain and regrets. and the beauty comes through, all of everything at once, and its as perfect as a story about a person suffering with a painful disease can be. believe it or not, i tend to avoid such personal stories, finding them disturbing or depressing. but for yours i feel only a kinship of some kind. youre stronger than i am– weaknesses and all. i admire your strength, and your weakness, and above all your candor. its not that i dont sympathize, on the contrary! i imagine its extremely difficult. thats why i always wish you the best.

    Liked by 1 person

    1. Bless you! I always felt that if I could inspire, I had purpose. I accept my life – the good and the bad – and writing helps me do that. I follow the blog you shared. Although she has different challenges, much of our experience is shared.

      Like

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