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...
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)
Nothing is impossible with determination.
Yes, Jo, the spoon theory has helped me understand others' fatigue. I have a friend who commits to doing just one outing a day. If she comes to visit me, she doesn't stop at the grocery store to pick up dinner on the way home even though she drives right by. That would be 2 outings and she knows she can't.
ReplyDeleteAlso, I'm all for minimizing personal care. I'm better about showering now, but I still often wear my clothes to bed because I just refuse to force myself to change my clothes into pajamas when I'm tired at the end of the day. Especially if I've got a T-shirt or sweats on. It's SO much easier to just crawl into bed.
Barb,
ReplyDeleteI agree. It's the same here with shorts and a t-shirt. After 14 months post stroke, my energy level has improved but not that much. I babysat my 22 month old grandson the other day and had to take a nap when he did. He wore us both out. While I wouldn't trade my time with him for the world, I paid for by less energy to start with for two days.
I was on one side of the heated debate...and yes, I fully get the fatigue issue and carefully choosing my activities to stay in my sweet spot. Borrowing spoons from another day is always a bad idea. I posted the spoon theory video awhile ago, it is a great explanation.
ReplyDeleteMy main take away from the heated debate was basically Amy's main point in her post. "If you don't have it, you don't get it!" Sadly, very true. This is my main remaining deficit, and it alone is disabling even though I can use both my arms and legs. I'm always hoping it improves, resolves....which it is better...but geez it is slow progress and I have a long way to go back to baseline. Until then, it's planned naps and carefully chosen activities/environments(no noise, commotion, bright lights, etc.).
I forgot...I had left side neglect at first too. Very strange. My clock looked similar to the one in the picture, except all the numbers were on one side. I knew there were 12 but couldn't arrange them properly. Mine went 1-12 with the 1 @ the 12 spot and 12 @ the 6 spot. They would also not allow me to get up alone...I would cut all corners short and bang my left side constantly. It was strange, but much better now. I still burn myself regularly when cooking, I grab hot things with my left hand without thinking most of the time. Amazing I can drive ok...kinda scary actually.
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ReplyDeleteElizabeth, I remember well. I've got a long way to go also. (sigh) We'll get there. It still amazes me how the same type of stroke in the same area affects different people differently. People don't often think of noise and lights as taxing but they are.
Yes, lights, noise, chaos, everything that requires "attention" drains precious energy. It's been a slow learning curve for me on ways to best conserve/utilize my all too limited energy reserves....as exceeding my limits sets me back for days or more.
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DeleteYour post has be thinking of a lot of things. I have a lab test coming up that could result in me finding out I have an incurable medical issue and it's great to read about those like you who live with your condition instead of being conquered by it. Very inspiring.
ReplyDeleteElizabeth,
ReplyDeleteI'm luckier than most. I installed room darkening drapes in my bedroom because of my husband's condition. Some of his pain is migraine type headaches because of the tumors in his brain, before my stroke. Because I'm an empty nester, I don't have children running around the house so I can maintain quiet. It's like the sensory deprivation I used with my youngest when she was over stimulated. Now it works for me too.
What a trial a stroke can be Jo. It's good to hear how you carry on your fight! (Via Jeremy BeingRetro.com)
ReplyDeleteThanks Maurice.
ReplyDeleteHi Jo .. I've never heard of the spoon theory before - but it's an interesting way to describe exhaustion in illness and the stamina available.
ReplyDeleteMy mother had left sided neglect - she was bed ridden and could do very little .. but the reading aspect always fascinated me, and her head on one side - so we needed to be that side, if we could. It eased, but not fully ..
Interesting to read the way it affects you ... thanks for sharing with us ..
Glad the mini challenge of this week has eased off .. not something you need happening .. Hilary
Hi Jo! Before anything else, I have to thank you for 'attending' the Blog Blitz event the other day at my site. Your words are inspiring to me. It's also amazing to know that there is someone else out there who understands exactly what I have felt during those beginning months after the stroke. It was traumatizing for me to have to shift out of the role of care giver, and into the role of care recipient. If memory serves me correctly, I think I was here for your Blitz as well. I think I even commented on a couple of your posts. My short term memory isn't the greatest anymore. But I have since followed your blog, added you as a contact and into my circle. So there. :)
ReplyDeleteBTW, I will take you up on your offer of resources. I will be emailing you tomorrow most likely. I have a lot of thank yous to do today! LOL.
PS- This was a great blog post. Lily
Hilary- I'm glad too!
ReplyDeleteLily- it was my pleasure! Waiting for the email.