Tuesday, January 27, 2015

Redefining Disability Project ~ Post #15

If you see this picture it must be Tuesday again.
Question #14
Describe your baseline, or an average day.
My average day has been upended by being a caregiver. I beg to question why be average when being Abby normal and excelling is so much fun?I excel at being Abby Normal. But that aside, I'll continue.
Awaking in the morning normally coincides with my bladder being full like it is for most people. Except when I first wake up, I don't realize that my bladder is full. It takes movement for the sensation of a full bladder to register. It's one area where I have a sensory deficit from my stroke.

I clamp down on my peritoneal muscles and reach for my brace. I'll don the knee high socks I have to wear with it, position it correctly, fasten all four velcro straps and then put on my shoe. Repeat the process with my left leg sans the AFO. I'll swing myself into an upright position and drop my legs to the floor. My mattress sits a little over my hip height.

And then, finally then, can I make my way the twenty steps to the bathroom willing myself not to pee all over myself. It doesn't always work. Accidents happen. When an accident happens I've got to strip my clothes off including my AFO and clean myself, my AFO, and shoes before putting them back on. This in itself is pretty average because it happens more times than not. Now I wear pull-ups at night. Less early morning fuss and muss.

I'll get dressed one handed. I've done away with standard zippers and buttons because elastic waist pants are so much easier. Baggy t-shirts replaced the button down front clergy shirts I used to wear. Most times I go around without a bra on. I mean, who am I trying to impress? I rarely conform to the norm at least by US standards. I find it is much easier to get dressed lying in the bed instead of sitting on the side of it. My leg while not technically paralyzed has a mind of its own with the spasticity. My doctor tested the knee reflex action by tapping it with his rubber hammer and it bounced all over the place like one of those little rubber balls on speed. It took three minutes to stop because he wanted to see how long it lasted. In colder weather, it's baggy sweatshirts.
I'll say my morning prayers and praise Him for the day ahead. Because any day above ground is a blessing.

I'll grab a plastic spoon and a cup of yogurt from the refrigerator to serve as breakfast. Sometimes I'll eat grits or oatmeal, but that's simple enough with a microwave. Feeding myself has never been an issue. I've always gotten food into my mouth as my girth will attest to. A quick clean up too...just toss it into the trash. The grits or oatmeal may mean washing a coffee cup. I take my handful of meds (all 8 of them).

Cute when they are this size
I'll tend to my critters next. The puppies (full grown German Shepherds) are fed. The cats have been loved on and fed. The lot goes outside to get from under my feet while I tend to the others. I'll give the Angora bunnies their attention while I spot clean their 56x42x56 inch cage and they'll get to hop around the family room while I tend to the rest. They are really going to hate downsizing with the new additions planned this year. Stray bunny pellets and hay are swept up and put in their litter box. This is emptied weekly. Yes, they are litter box trained bunnies. Next comes the Guinea pig, Bella. Her cage is cleaned, she's loved on, and fed. Choice morsels of Dandelion greens are fed to her by hand. I'll call for the boys, the rabbits, and they'll jump back into their cage ready to eat. Yes, I trained them to do this also. I'll leave them a pile of Dandelion greens in their cage too. Yes, I spoil my babies.

Then, I'll go outside for the rest of the daily chores. I have a year around garden. My climate is mild only freezing a couple of days a winter. I'll cut lettuce leaves and pull weeds, water each plant while I talk to them. The leaves and weeds go into the composter which I turn diligently every day. If I don't take care of my garden-my garden doesn't take care of me.

I'll do my physical and occupational therapy twice a day. This involves thirty to forty-five  minutes of concentrated effort on my part. After almost three years post stroke, I still do them. They are essential to my recovery.

I'll play games on my computer. It's not really playing. The games help rebuild some parts of my damaged brain like sequencing, numbers forwards and backwards, finding words, and even color definition. Right after my stroke I couldn't distinguish between green and blue. It's cognitive therapy. It might be fun and games to someone else, but to me it's work.

I write this blog and answer the slew of emails I get each day to rebuild my spelling, vocabulary, and context. I still will have to write it in advance to correct it several times before you read it. But very slowly, it is getting easier to write. It is still going to take time to get it right again.

Sounds like anybody's normal day doesn't it? Except I work twice as hard to have a normal day or have it appear normal. 
I suffer from chronic fatigue since my stroke and have PBA. When my brain gets tired from too much input the body follows close behind. Too many people talking at once even if it's just two people is exhausting trying to keep up with what they are saying. After washing a few dishes in the sink, I'll need twenty minutes just to recoup some energy. With the PBA, I can cry because the wind is blowing, or fly into a fit of anger because the paper got wrinkled. It's a fine edged sword of emotions that I can do little to control. I do have a miniscule amount of control over these things now, but it's been almost three years in the making.

My day revolves around a clock ticking down from the time I awake. Between medication and fatigue, each task takes twice as long and uses twice as much energy as it did before my strokes. Absolutely nothing is faster.
<stepping up on my soap box to finish>
An average day? What's an average anything? Take a look at the yin-yang ----> You see that black line between the yellow picture and the blue? That's average. Somewhere in between the good and the bad. Bad things happen on good days and good things happen on bad days. The line is thin. There's no such thing as average. It's about balancing.

Every day could be a good day or a bad day depending on which side of the line you are viewing it from. After all the average line is thin by comparison to the two halves. Not everything that happens during a day is bad nor is it good. 
Normal? Average? My question is why choose? What is average for me might be different than your average day. Disability and limitations aside. Everyone has something that disabled them. Some more visible than others. Every day is how you view it. Why be average when you can take each day as it comes to the best of your ability. Make it your day. Your way. The best is all you can do. Why be ordinary when you could be extraordinary?


  1. Dear Jo, I have a very easy "average" day. I see that you don't like the word "average," but I interpret it to mean "typical." The major difference between yours and mine is that I have a fully functioning spouse, who brings me coffee in bed in the morning, and tends to the dog, along with every other household chore that challenges me. For example, I CAN do the laundry, but he insists on doing it. Things I'm "allowed" to do are vacuuming downstairs, cooking, making our bed, going to grocery store, loading and unloading the dishwasher, dusting, picking up, and keeping the counters clear (Tom insists they stay absolutely clear). All easy one-handed, and I don't do them all in one day.

  2. Barb, I can only dream of days like that, but I don't envy you. You deserve it all.

  3. I don't know how you do what you do either. You are amazing.

  4. Rebecca, I do because I have to. Didn't you do the same to keep your independent lifestyle?

  5. When I think of "forced recovery" it looks like this. I hope that recovery is one of the many benefits that you will reap as a reward for all your hard, beautiful work. Care giving is the most precious gift that we can give.. I know u know that, but it is beautiful to read about/watch. Thank you for sharing and leading by example. :)


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