Frustration and Stroke Survivors: 5 Ways to Avoid It

Charles M. Schulz is gone now (he died in 2000), but his memory lives on in the characters he created in Peanuts, those lovable little ones who express honesty to a fault, sarcasm to the weak-minded, and the thoughts by illustration of that endearing dog, Snoopy. 

In one scene, Linus is obsessed that there is a Great Pumpkin who will appear on Halloween night and has Sally accompany him to the pumpkin patch. Linus passes out as  the shadow of Snoopy appears instead, rising slowly from the pumpkin patch. When Linus "comes to," Sally, out of frustration, goes into a maniacal rant about missing Halloween and all the candy. That's when she says, twice, "You blockhead!" (https://www.youtube.com/watch?v=7ushQ_mMSqw) 

I called people blockheads, too, before my stroke 6 years ago. Blockhead was sometimes followed by "Aaaargh!" But that's all. Now, that I don't have any filters after my stroke (http://stroketales.blogspot.com/2014/06/impulses-and-brain-aka-fuck-where-did.html), my words are a lot worse, like prick, shithead, and asshole. If what they did was really bad, I would say, "Fuck you" (but that only happened three times and in the first year after. I ended up feeling sorry for them).

I was frustrated, and still am. I realize that it's not going away any time soon--or ever.

From what I figured out in my post-stroke time with myself, frustration comes about whenever my goals aren't met. I have also decided that there are 2 types of frustration, which I call outie and innie. (Just like the belly button. I stole that from my mother). 

Outie frustration comes from causes that you can't do anything about, like standing in line at Walmart or getting stuck in traffic. Outie frustration is unavoidable. 

Innie frustration is about the disappointment that gets in the way when you can't achieve something you want, the kind of frustration that we can do something about. 

After 6 years, though I'm not done, I figured out 5 suggestions for avoiding my innie frustration, and I'll pass them on to you:

Problem: If I would phone any government agency and the person on the other end didn't understand me, or wasn't listening and had me repeat things, I'll start to get breathless and my throat becomes hoarse from saying it again--and again. And the more aggravated I get, I soon go into hyperventilation. 

Solution: I have friends, you have friends. Have them make the call with the phone on speaker so you can interject (unless you have a rotary phone and I'm simply not going there).

Problem: You have to open a can or jar, you're alone, and you can't.

Solution: Just go to Amazon.com and type these words into the search bar: "can opener with one hand" or "jar opener with one hand." You'd be amazed at the assortment. Holidays are coming. He-loooo!

Problem: You want to eat something, but there's no one home to make your meal.

Solution: Glad makes those Zip Lock bags now. Don't buy the slider bags. They're impossible to get open. Have someone cut up individual portions--sandwiched or whole meals--and place them one at a time inside the Zip Lock bags, placed in the refrigerator or freezer. You can take one out anytime independently and put it in a microwavable-safe container. Voila! A meal in minutes!

Problem: Take a look at your bathroom sink right now. Does it look similar to this? Do you have your toothbrush and toothpaste, cups to rinse your mouth after, your personal grooming tools, any lotions, towels, where they are unreachable? Mine resembled the pic on your right.

Solution: Organization is key. I re-organized the sink area with small containers, putting all my brushes, make-up and mirror (for guys, other grooming tools), lotions, and towels  separated within easy reach.

Problem: You are ready to go to bed and forgot your book in the living room. (If you wear an AFO, you really don't want to back there and get it). Instead, you turn on the TV or the Smartphone or the computer, which is a bad choice. A few years ago, the Chicago Times reported that neuroscientists have found light-sensitive cells in the eye that detect light, which contain a photopigment called melanopsin that is particularly sensitive to blue light. 

"Blue light alerts the brain and suppresses the melatonin, and shifts your body clock at the same time," said Harvard Medical School sleep researcher Steven Lockley. "Your brain is more alert now and thinks it's daytime because we have evolved to only see bright light during the day."

Solution: Reading before bed--good choice. If you don't have a night stand, you can pick up a standing lamp for cheap at places like Goodwill or thrift stores in your area.

And there you have it. Easy-peasy. Quick remedies. So come on. Get going. You don't want to be called a blockhead, do you?

If You Have Aides, 3 Things You Have to Remember About Acting Like Your Own Boss, aka YOU'RE in Charge!

It's so hard to deal with people. I had aides in New Jersey and had to find even more aides for my stroke care when I came to Pittsburgh. I called them personal assistants to give the job a more elevated status. It didn't help.

One was allegedly addicted to cocaine. One brought her boyfriend every time.  One told me I was discriminating against her when she couldn't lift my wheelchair anymore. One took her 2 whining children along.

One smoked wherever she went, even when there were "no smoking" signs posted. It was like a revolving door. I hired and then I fired. But what they all had in common was they needed money--my money. It took me a year to finally figure it out.

There are tons of aides, I later found out, through various websites. But the trick is finding great ones. You have work ahead of you as well. These 3 tips will help you find and keep the aides you want!

1. Establish your role from the start

Unless it's your wife or husband, they're your employees, not the other way around. They work for you. And as your employees, give them a fair chance of doing things their own way. Then, if you don't like the way things are done, speak up. That was the hardest part for me, realizing that they work for me. But once I did, that was the end of feeling like they were in charge. Plus, they're not mind readers. You have to tell them what you like and what you don't!

2. Appreciate your employees
 
When you're your own boss, you're dealing with people who, as a matter of fact, are sensitive souls. Say thank you a lot, but don't overdo it. I used to say "thank you" roughly 100 times a day. (I started counting because I knew I was doing it too much). Now, I say thank you for above-and-beyond activities, like opening a box of tissues when not asked to do so, anticipating my bad allergies, or complimenting them on a good suggestion.

3. Give employees the resources to do their jobs

Provide them a list when they come, on things you want to get done for the day. Always stock up on kitchen and bathroom wipes, the antiseptic kind, like Clorox or Lysol. Have something to dust your furniture, and even dry washcloths will do. Keep your vacuum in top-notch condition by showing the aides how it works, i.e. filter placement and emptying it to avoid clogging. 

When all is said and done, it's really up to you. 

Stroke Survivors Could Easily Handle a Power Nap. But Do They Want To?

Everyone feels tired at some point. But I fight napping. If I nap, even for 15 minutes, during the daytime, I'm hit with insomnia at night and go to sleep at 4am. It all started when I stayed up later and later to write this blog and other things.

Karl Doghramji, MD, Medical Director of the Sleep Disorders Center, Thomas Jefferson University, Philadelphia, reports, "The avoidance of naps has been proposed as a method of enhancing sleep continuity on the following night." 

Truer words were never uttered. When it comes to strokes specifically, The National Stroke Association (NSA) says that post-stroke fatigue, or PSF, affects as much as 70 percent of stroke survivors, especially in the early years. PSF happens without warning. PSF is not just feeling tired and wanting to take a nap. With PSF, you have to take a nap. 

The NSA identified 3 types of fatigue for stroke survivors:

Cognitive (like mental fatigue, difficulty focusing)
 
Physical (like function limitations, spasms, pain, muscular weakness, interrupted sleep)

Emotional (like crying and laughing at odd intervals, depression)

I encountered all of them. On the cognitive side, even six years later, I still have mental fatigue and usually rest once a day; just resting, not necessarily napping. I have all of the physical ones randomly. As for emotional fatigue, I am still, somehow, motivated, but I cried and laughed at the wrong times and places the first few years. And depression? I still have it, though rarely, but doesn't everybody?

The top 10 foods, according to the NSA, that can help ward off fatigue include:

1.   Walnuts
2.   Pumpkin seeds
3.   Quinoa
4.   Yogurt
5.   Whole grains
6.   Wheat bran cereal
7.   Red bell peppers
8.   Tea
9.   Watermelon
10. Dark chocolate (Watch your intake and your waistline!)

I tried all of those on the list, but I'm back to insomnia again. 

According to strokeassociation.org, survivors expend more-than-normal energy to do everything.

“You may have less energy than before because of sleeping poorly, not getting enough exercise, poor nutrition, or the side effects of medicine. You have as much energy as before, but you’re using it differently because of the effects of your stroke. Things like dressing, talking, or walking take a lot more effort. Changes in thinking and memory take more concentration. You have to stay 'on alert' all the time--and this takes energy,” says the association. 

So if you fight napping and still have trouble with Circadian rythym, where you wake up later and your days go until 4am, for example, try these methods coming from UCLA's Sleep Disorders Center:

• Poor sleep habits can also disrupt your sleep pattern. A sleep specialist can help you adjust your behavior to promote better sleep. Maybe you have sleep apnea.
• Bright light therapy may help shift the circadian system and reset the body's clock. Properly timed exposure to bright light can help advance or delay the sleep cycle. The television or computer, for example, may interfere with bedtime because of the bright lights. 
• Studies are exploring the use of melatonin supplements to treat circadian disorders. Melatonin is a natural hormone. Your body produces higher levels of it in the bloodstream at night. It is believed that melatonin helps signal your body to go to sleep. It may also play a role in resetting the biological clock. Talk to a doctor before taking melatonin. 

I want to join the world at 7am and go to bed at 11pm. But I'll conquer insomnia. It just takes time, the experts say, and that's the response I like the least.