Thursday's Tumbles and Stumbles: The Raccoon Mask and Seeing Red

Well I really did it this time. It was an epic stumble and almost tumble if there had been more space. It could almost be categorized under the results of sleep deprivation or not walking will under the influence of medication.

Have you ever sleepily made your way into the bathroom in the middle of the night and dozed when you did your business? I think we all have at one time or other. Have you ever momentarily forgotten how you got somewhere? A brain fart moment? Has medication ever hit your system harder than you expected? Okay, now you have the set up for this week's stumble.

I awoke sitting on the commode. Did I have to pee or was I done? How did I get here? My AFO was on correctly, so I must have been awake long enough to do it. I find I had already finished the chore that I went to the bathroom for. I try to  push forward to rise and my legs don't want to cooperate. "Okay Jo, get it together.  There is a comfortable bed waiting for you. Alley Oop."
I manage to stand and both legs feel like they are made of Jello. I reach forward for the towel rack for support. The beauty of having a 5x7 bathroom. My hand misses the mark.

I pitch forward, more like stumble. The bridge of my nose smashes into the ceramic towel rack and my head pile drives into the wall behind it. Imagine cartoon stars circling my head. If I thought I was dreaming earlier, I was wide awake now, by God. I grabbed the hand towel which was conveniently catching the blood and held it to my nose. I sat back down on the toilet seat and leaned my head back. Ah, the joys of all the muscle relaxers and blood thinners I'm on.

Now the normal procedure for stopping blood flow from the nose is to put pressure near the bridge of the nose, but I wasn't touching it. It hurt too bad. I balanced the towel under my nose and reached for the cold water tap. There's one thing good about having a deep well for water. It's always cold. I put the washcloth under the tap and then wrung it out. I replaced the hand towel with the cold washcloth. I seemed to sit there forever waiting for the blood to stop, but it was more like five minutes.

Finally, the blood stopped.  I got myself cleaned up and wobbled off to bed. I awoke again a few hours later to give my husband his morphine  and went back to sleep thinking I had dreamed it all except from the pain radiating from the small goose egg on my forehead. Back into bed for a few more hours sleep as is my custom.

I awoke later to tiny paw taps and quick flicks of a rough tongue. My furry alarm clock, Lil Bit the cat, has no snooze button. She taps me with her paw and licks me until I get up. She'll wait while I don my sock and AFO always within a paw's and tongue's reach of me in case I doze off. She knows me too well. We have a regular morning routine now since my stroke.

I glanced at myself in the dresser mirror as I passed. Jerking back to stare at my reflection. I saw raccoon eyes and a bruised goose egg on the right side of my forehead. The battle trophies from the night before. Okay, so the circles around my eyes were more of a purplish-grey than black, but still a shocking sight upon waking. There was a definite knot on the bridge of my nose so I think I might have broken it. It's straight so I'm not going to worry the doctor with it. It's all tender to the touch and I'm suffering the after effects of old aged aches and pain throughout my body as I usually do after being hard on my body. The face will heal, but I wish it had improved my looks (as cute as a raccoon) instead of me looking like I'd gone a few rounds with a boxer. Or even had been able to say that I'd had a nose job instead of saying I got this from getting off the commode.

In other news...
I say this news report and saw red a week or so ago on CBS. The story was about a nasty note left on the vehicle of a handicapped person. You can find the news story here.  I've had a blog about handicapped parking before and I've even left messages for people who don't belong in them too. This was so cruel that I was seeing red after I viewed it. It never ceases to amaze me the cruelty of people. It was so disrespectful and down right mean spirited. It makes me want to throttle to writer with my cane!

How has your week been?

Thursday's Tumbles and Stumbles ~Stop Helping Me!

The stumble of the week is being a caregiver to a man with a caregiver/helping spirit. This has actually been going on for over a year now, but it almost made me loose my cool this week.

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As my husband becomes more debilitated and helpless, he continues in wanting to assist me and the hospice aides in his care. He'll struggle to change positions in the bed for better access for us while we are attending to him. This increases his pain levels and leaves him gasping for breath. Reminding me of a fish out of water. It would be funny if it wasn't so serious.

No, I don't want to disable him or hurt his ego, but things would go along so much smoother if he'd stop helping me or us.

He had an accident over Thanksgiving weekend not the spilling something or falling kind, but a bowel issue, of the runny kind. Now mind you, I only have one working hand, but I'm changing pull-ups on a 60+ year old man. He raises his bottom for me to slide a disposable pad underneath him. I was thankful for this even though I could have slid it under him without his help. I grab the wipes, scissors, and a clean pull-up from their bags and I'm ready for action.
Hubby:"What do you want me to do?"
Me: "Nothing. Just be still. I got this."
He grabs the bed rail and rolls. "Well, I could roll on by side."
Me: "No, roll back the way you were and stop trying to help me."
He lets go of the bed rail and flops on his back again. A brown stain appears underneath him.
I grab the scissors preparing to cut the sides of his pull-ups. "Don't move."
Hubby turns towards me, "Huh?"
I just manage to pull the scissor tips away from his belly as he turned. "Don't move!" and I show him the scissors. He nods and turns back onto back. The brown stain is now larger underneath him. I'm beginning to wonder if he really was easier to change a diaper on than my two-year old grandson. If this continued, I'd have to change his sheets too.

I cut the sides of the pull-ups and lower the front half.
He lifts his rear end up before I'm ready. The back portion of the pull-up clings to his buttocks for a moment and then flips mess side down onto the bed.  It was then I noticed it was only half on the pad. The other half landed on his sheets. Just as I had suspected each time he had raised and lowered his rear end, the waste was creeping up over the waist line of his pull-up. Now, both sides had mess on it. I'll have to bathe him to get it all off of him.

I let out an aggravated groan. Now I'd have to change his sheets too. I threw a blanket at him to cover up. "This mess will take a bath to clean up."
Hubby: "Okay."
I returned with a basin of warm water and soap. He had pulled his bedside table next to the bed to make it easier on me."It's warm so it shouldn't be so bad."
I pulled on the bedside table so there would be enough room for me to get close to him for the washing part. It resisted. I pulled harder. The table tilted and the bath water slid off the table. When it hit the floor, the splash upwards soaked my jeans and my shirt. Now I'm cursing under my breath as I pick up the empty basin. "Don't touch the table again."

I cleared it from the bed power cord and positioned it where I needed it. Now not only did I have to clean him up, change his sheets, but I had to change clothes too.
Once I returned with more warm soapy water, I bathed him clean. This time he didn't move unless I asked him to. I pulled the soiled pad out to cover the messy pull-up and put clean pull-ups on him. Changed the sheets before he even realized it.
Hubby: "Do you want to help me into a chair while you change the bed?"
Me: "It's done."
I picked up the soiled bedding and put them into the hamper, changed my clothes, and plopped into the chair by his bed exhausted.
Hubby: "I'm sorry, honey. I was just trying to help."
Me: "Babe, I love you, but please stop helping me!"

Sunday Stroke Survivor ~ Inappropriate or Overkill Emotions

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I've talked about my inappropriate responses on this blog for over a year. It has a name that I haven't discussed yet. It's called Psuedobulbar Affect (PBA). You may have seen recent television commercials about it recently. Now you are meeting someone afflicted with it. It's not depression.

It's a side effects of my stroke. No, I'm not crazy for laughing for no apparent reason, or bursting into torrential sobs at someone saying "boo," or going ballistic with rage when you drop a pin. I just can't help myself and I have no control over it either. No I'm not exaggerating or taking an author's license.

Some of you may remember the blog about the one and only wedding I officiated since my stroke. For those who didn't get a chance to read it, it's here. Since my stroke, you won't find me without a box of tissues and my incontinence pads for this very reason.

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Everyone has something that tickles their funny bone. That's normal within the confines of the situation. People tear up at commercials or movies. That's normal too. Everyone has an instance where anger explodes for a just cause. That's normal too. What I'm talking about is no control and no outward event which triggers this response.

I can start crying for no apparent reason or laugh outrageously over something sad. Even if it is as image that I saw on television months ago of one of those starving children. All it takes is the picture to flutter through in my mind. The same thing goes with laughter and anger, or any emotional response. It is beyond appropriate to the extreme. I can laugh until I can't breathe and pee my pants. We used to joke about one of our daughters who would get so tickled that she always ran from the room saying, "I gotta pee!" Well I can't run nor have significant control of my bladder so I'll pee my panties.

My family and friends look at me with concern and ask if I'm okay. My usual response is an attempted nod of my head and a wave of my hand until I finally get control back. It can last several seconds or several minutes. That's why most of the events I go to revolve around family. I rarely go places surrounded by strangers because they will not understand what is going on. But I'm lucky, I have a huge family.

If it happens in public, I always have family or friends who will talk me down off the ledge. They will laughingly tell the truth to strangers, "She's okay. She's brain damaged." It gets some strange looks and people will sidle away with questionable looks and hope it's not catching. By the same token, I burst into tears at The Olive Garden one night because they ran out of what I wanted. It was like someone had told me my favorite dog had died. The poor waitress. Luckily that particular episode didn't last too long.

• Embarrassing? Oh yes! 
• Will it scar me for life? Nope because I realize it is part of my stroke affects me and not really me. It's no stranger than my AFO, cane, the way my arm won't move, or the way I speak. Although I will admit it is disconcerting to others. 
• Stand out in a crowd? Yep, I sure do more than my physical impairments. But then, I've always considered myself as a unique being in a crowd of dull people anyhow.
• Isn't there anything that can be done to fix this? Nope there isn't a cure. All they can do is prescribe drugs to ease the response. It doesn't stop it from happening. It's how my brain functions since the stroke.

Say hello to the new, and glorious me after a stroke. I was on Cymbalta before my stroke because of Fibromyalgia. Not depression. Now it seems that this same drug is used for PBA sufferers. It helps me keep control of my emotional outburst but not stop them entirely. There are many new drug therapies also. Welcome to my post stroke roller coaster- it's either a riot of laughter, crying in bucket loads, or exploding in indignant rage, but it's still me!

I refuse to hide under a rock.
I refuse to die.
I refuse to give up trying to be better.
I refuse to be ashamed of myself because of my circumstances.
Won't you join me?

Nothing is impossible with determination.

Sunday Stroke Survivor ~ Grief- Anger

For today it's part two of the grief series that deals with anger. You know that emotion where there's this devil on your shoulder poking you until it overrides the angel whispering in your ear.

After a stroke or a death of a loved one, your emotions are raw and exposed for all to see. But with strokes sometimes comes the added bonus of inappropriate responses like I suffer from. I can explode in anger or break down in hysterical tears, or laugh myself sick at the drop of the hat. That is understandable to all that know it is part of my injured brain being over stimulated, but with strangers that's another story. My medication goes a long way in suppressing these but all bets are off id I'm under stress like the one wedding I officiated at or with coping with my husband's recent downhill health turn.

Besides this with the grief of loss, you become angry at everything. The dog barks. The cat meows too loud. The kids drop a cotton ball on the floor. Someone whispers "boo." Or nothing at all. It can turn you into a screaming meme. It's all part of your grieving process. It's also one that will revisit you periodically in years to come. Grief doesn't end, but it does lessen over time. You learn to cope better the farther you get from the incident. You won't stop missing what was lost ever, but adapting to your new reality.

You are walking down the hall and the toe of your shoes hits the floor wrong. The cat runs
between your legs and causes you to fall. You end up hitting your arm or leg for not catching you. "Stupid! Useless things! Why did this happen to me." You lash out at the first available thing. You aren't really angry at that person or thing, it's just handily available. In the short term this can be tolerated with open communication lines, but the long term is a different story.

What you are actually angry at is the loss. The fact that your comfortable circumstances are forever changed and changed drastically. There's the crux of the matter and if you are honest with yourself.  You will see the truth in the matter. It hurts your ego. Your life is changed from comfort to uncertain. Your future is changed irrevocably. What you thought about yourself has changed.

People do not like change. People don't like adapting.  For both of these statements I'll add ...unless they have to. That is exactly what happened to you. You had to make a change not by choice of want to or need, but had to. It's easy to blame someone or something as the cause for this change. But ultimately it is only your resistance to change that causes anger.

So how do you break this cycle? What do you do with a child in the middle of a temper tantrum? Well, you examine the cause. Can you change what causes these outbursts? Absolutely! Granted you can't physically bring back what you lost. No one can. No matter how much we beg and plead our case. It happened. It's real.

Now some coping skills to deal with your anger issues during grief.

• Take a minute to breathe and think before you act or in this case act out.
• Examine to root of your anger and the real cause. Are you angry at yourself or something else.
• Does the person you are directing your anger towards really deserve it. Part of your mind will say yes but to the extreme you want in to take it?
• Realize that the anger you feel may be justified but gauge an appropriate response.

The fact is you are not a two-year old who can't express what they need. Well, I take that last statement back in aphasia affected stroke recovery patients because they can't not fully express their needs. With aphasia, the difficulty is with communicating your needs and expressing what you are angry about.

I find the more upset I get; the more problems I have expressing myself. It becomes a vicious cycle if I let it. Instead, I'll hold up a finger to pause what is going on. I'll follow it with my version of "Be right back." I'll walk away or take a couple  seconds to gain control of myself.  A prime example of breathe and take a moment. Just because I'm a minister and have in depth knowledge of this process doesn't mean I don't struggle with this. I do. I'm only human and not Divine. That being said, there are ways to communicate your needs without speaking even if your partner has to play twenty questions, or extreme facial expressions.

If your first impression is anger don't give in to the emotion. If you need to absolutely vent your rage, do so in a pillow. Those around you will greatly appreciate it. It also saves money for all the things you didn't break. A mad at the world attitude gains you nothing but is self-feeding and perpetuating.  Make all around you aware that it's not them but you before you vent to broach any misunderstandings.

Again face the root for your anger. It's how you are adjusting to change with all the frustrations it brings. Deal with the anger and vent if you really need to. Be cautious though of lapsing back into the guilt trip discussed last week. If you have lapses be the first to apologize to those around you. Even a dog will wag its tail in response. It's time to put your big boy panties and move on.

Don't expect knowledge to be an instance cure. There is none. Yes, you will relapse into this stage many times during the coming month and years to come. Accept it. Be forewarned that this might happen again and be on your guard. You know the warning signs better than anyone else.

So what are you really angry about? Isn't it all about you? Isn't it resisting or adapting to changes?