Sunday Stroke Survival ~ One Side Neglect- The Twist and Fatigue

Jo Murphey
The Murphey Saga

Sunday, September 22, 2013

Just after my stroke, I was made aware of one side neglect. This came about when wheeling myself from therapy back to my room and I pinned my arm between the wheelchair and the wall.

Now I am luckier than most. I lost sensation in just a few places.Yes, I can finally say this and mean it. My right side of my face still feels like there is Novocaine still injected in it, the outer portion of my thigh still has no feeling, and the bowel/bladder perception is still gone, but I am luckier than most who survive a stroke that have lost it all.

A PT assistant extricated my arm from its pinned position and placed it on my lap saying, "This is your baby and you've got to take care of it." The problem was not that I didn't know it was there because it hurt when I crunched it. I just couldn't move it out of the way. Plus the wheelchair wasn't balanced for one sided locomotion. I've since learned how to make it go where I want it to go. Yes, I will still run into things like door jambs with my affected side but that's more of a balance issue than not perceiving it's there.

I'm lucky because I don't have the standard one side neglect that most stroke survivors have. Mine is twisted. My neglected side is my functioning side. While my personal care of my affected side is top notch, my poor functioning side is hurting bad mainly because I can't reach all areas. My elbows are rough and Lord help me if I get an itch on that side.

With an itch, I become a bear in the woods looking for a tree...

Or a contortionist...

Or maybe the person creating a new dance move.

Now applying lotion to various spots on the right unaffected side of my body has the same challenges. Yeah, yeah, I've seen those lotion applicators in the adaptability stores but some spots you just aren't going to reach with those things.

It's trial and error, and an adventure in personal care at best. It's best left when I have abundant energy because the movements you have to make will zap all your energy stores. Personally, I have more pressing needs that have to be attended to like shopping for groceries, administering injections of pain killers into my hubby's dwindling muscle derriere, and cooking. You know, living life to it's fullest given limited energy stores.

Shaving, scratch the itch, toe nail clipping, lotion applications, and other necessary tasks are now delegated to others. I willingly will pay for others to do these things for me. Or on occasion, delegated to an unlucky family member. I may forgo the occasional shower for hitting all the pits with a washcloth, or have hairy pits and rough skin, or may just do without knowing I need extra energy for the trials of the day like doctor appointments. All the things I can't do without expending limited limited energy resources to spend them on thing I really want to do.

I choose how I spend my twelve spoons of energy a day. Haven't heard of the spoon theory of energy? There have been heated discussions over on Amy's blog about post stroke fatigue so I thought I'd share this.

Although Christine speaks about Lupus, it applies to post stroke energy levels. Watch this for an idea of what it's like living with post-stroke fatigue and choosing wisely...


Standard YouTube License @ Christine Miserandino

Nothing is impossible with determination.

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Sunday Stroke Survival ~ 

One Side Neglect- The Twist and Fatigue

in The Murphey Saga