And Some Days, It Does Not Pay to Get Out of Bed

For every other Saturday, my children and I have been cleaning and going through stuff here.  This has been going on for over a month now. The personality conflicts and head butts have driven me nuts. But they are my children and grandchildren. They are trying to help old mom. But some days,  it doesn't pay to get out of bed.

There's a lot of stress involved on my part. I'm dealing with grief. I'm deciding what to pitch. What to donate. What to keep. What to yard sale. And, who wants what. Some of these are trips down memory lane that send me through the time machine twenty, thirty and forty years ago before I can decide. Other decisions are simple- if I haven't seen or worn it in five years- it goes. Some things I have to juggle back and forth between keep, sell, and pitch.

It didn't come as any big surprise that my oldest daughter could be difficult when asked to do something she deemed unimportant like cleaning my bathroom. I can't clean my tub. I won't say can't, but more like it would cause me too much hardship and pain to do it. It takes kneeling, or bending over in my tub to do it in an upside down fashion. Tubs get mighty slippery when using water and cleansers. Last time I tried, I pulled down the shower curtain on my head to avoid falling. I raised a nice goose egg on my forehead for my effort. I had to asked my oldest grandson to put the curtain back up. God love him. He's so special that he hung it back in place backwards. The pretty side (not waterproof) was on the inside. Anyhow, my daughter thought it was a menial task that wasn't as exciting as breaking down the spare bedroom so she took FIVE HOURS to clean it. It really took an hour, but all the complaining and griping filled the rest of the time. She does much better when it's just her and me. But this time her younger sisters were here too.

So I also had three of my grandchildren here. I thought one of the two that were not cutting the grass would help me empty my lower kitchen cabinets. Once again, getting into these takes squatting, sitting on the floor, or basically standing on my head to get anything out of them. I haven't opened them in over three years. I had gone out and gotten boxes just for this occasion. That didn't happen. My granddaughter and my #3 grandson saw a spider and that's all it took. They refused to even walk into my kitchen again. They comforted themselves by texting and FaceBooking themselves for the duration.

My #2 and #3 daughters tried to help me in the kitchen. But that pulled them away from what they were doing...breaking down the bedroom set in the spare bedroom. My #2 daughter mentioned the last time she cleaned my kitchen and how she was disappointed that I had let it get in such a state again. That was my limit for frustration. I told them both to go back to what they were doing.

Yes, the kitchen was messy and I knew it. The last time one of my children had even done anything to my kitchen was THREE YEARS AGO! I hadn't been doing anything in my kitchen except to cook meals, wash dishes I'd use, wipe down the counters, etc. I was only caring for my husband and doing everything I could do for a year and a half. Nah, that was nothing at all. I was sitting on my butt waiting for someone else to do it. Maybe my husband could have done what I couldn't. Yeah, right!

About that time, my #3 grandson came running into the kitchen, "Grandma, Grandma! Your water heater is leaking and your whole garage is flooded!" I sent my son-in-law out to check it out. Just what I needed, I thought. All those boxes in the garage are now soaked. It turned out not to be my water heater but a backed up drain to my washer machine, but I didn't know that at the time.

I went into my office and tears of frustration began welling up as I plopped into my chair. It really irritates me that I cry when I get over frustrated and mad because I really should yell and scream. It was frustration because of the limits my strokes have imposed on me. If I hadn't had my stroke I could do all of this myself. If I hadn't had my stroke I wouldn't be exhausted all the time. If my husband had not have gotten sick and died, I'd be happy wherever we were. If, if, if instead of the reality I'm faced with. Anything is better than reality when I get like this. Calgon take me away! Wait, my oldest is still cleaning my bathroom. So I sat at my desk reaching for tissues. Eventually they all went off to their respective homes. I was left walking around empty boxes that I had hoped to fill. My house is a minefield of fall hazards now. But I'll continue on one day at a time.

Finally, the spare bedroom is almost empty. This will be the staging area for the yard sale. I've got an air cycle, my NordicTrack, my neck traction device that was used twice before my husband couldn't help me any more and some really great items in there already.

I'm paying my youngest daughter's way home. Gas and miscellaneous expenses from Texas for her to help me full-time. Her husband is still waiting for his transfer to Alabama to come through. Ya gotta loved the Army. She'll be bringing my two youngest grandsons with her. She's already arranged for child care while she helps me. She's a whirlwind when she gets started. Her ADD/OCD behavior defaults from her traumatic brain injury works in her favor with tasks like this. Besides I win all the way around because I get to see her and my youngest grandchildren. Even though they were just here for my husband's death and funeral, we didn't spend much time together (not in the way we wanted to).

So soon all of this will be over. I'll be able to close on my property in November liked I'd planned. I feel like I've been standing still with a two-thousand square ft house sitting on my shoulders. But after this I'll be moving forward again. Worst comes to worst I'll buy a small RV and live in it until my house is finished so I can put this house on the market. It shouldn't take the painters and carpet people to do their jobs. The house down the street sold last week after being on the market a month. This is a very desirable neighborhood.

I've had some static from my older grandchildren about selling this house. It's the only place they've known as grandma and grandpa's place. I understand. I really do, but things change. Life is not stagnant. I've got to do what is best for me. They are mid to older teenagers now. One day when they have lived more of their lives, they will understand too. Whatever income I have left will have to see me through the rest of my life be it five years or thirty. All their dreams of coming back to live in this house may change too in twenty years. There are no guarantees. Do today what you can because you may not have a tomorrow. Take enjoyment and hug it close.

Don't get me wrong. I'm thankful for my children and grandchildren so I don't have to do this by myself. But sometimes, I'd rather stay in bed than deal with any of them.

Sunday Stroke Survival: Power Naps

I used to take power naps like Einstein. I rarely slept more than four hours a night unless I was sick or drugged and I did it for thirty years!! During the day, I'd close my eyes and instantly fall into a dreamless sleep for twenty minutes and awake totally refreshed ready to take on the world again. I would burn the midnight oil often until 3 or 4 in the morning and get up for work the next morning. And then, repeat the process as I wrote and held down TWO full time jobs for decades. These are the classic power naps.

Since my stroke, that life is a distant memory. Mainly the chronic fatigue I feel. I now sleep six to eight hours a night when my body allows it. Spasticity has a weird sense of timing. The pain can cause even a heavy a sleeper to awaken in pain. I need those six hours at a minimum to feel rested. But just getting out of bed is a tiring struggle and it's just the beginning. How I managed all those months of waking every two to four hours to give my husband his morphine had to be God's grace upon me that I could still function. I depend on a two hour nap during the day to make it to bedtime. It was explained to me that I was burning through my energy in the recovery process and spasticity. What it amounted to was for every action I accomplish during the first four to six hours after rising used every ounce of energy I accumulated during the night's rest.

Now I literally pass out/doze off in exhaustion. I'll be sitting at the keyboard ignoring all the warning signs of my energy level reaching empty, and suddenly wake up a couple of hours later. It doesn't matter if I'm lying down or not, I'll nod off. Needless to say I work my driving times or running around times in the first four hours or after nap time. So my day can start at 5AM and can continue up to 10AM at the latest. It will be after 2PM before I can function outside the house in the public again.

These aren't power naps any more, or are they? Sort of. There's no definitive answers after a stroke. It's always, it depends. Before my stroke, my gas tank was filled full after a twenty minute nap. But now, I'm running half empty upon awakening after two hours of napping. I'm good until probably 6PM. Then I'll doze off in half a hour  for every two that I'm awake increments until I get my behind up and crawl into bed at 10. I have to stay awake until 10 because of my night medicines.

As much as I hate to admit it, part of this new energy cycle cannot totally be blamed totally on my stroke and an abundance of muscle relaxers, but age.  A few years ago I wrote a blog post about 60 being the new 2 because that's how I felt like my life was like post stroke. I still do! I often say, "I'm not a Spring chicken anymore or even a Fall hen." I also say, "I'm a tough old bird." All of these are true. If I was a chicken, I'm so old that even pressure cooking me for the maximum amount of time...I'd still be tough to chew (think-shoe leather). The fact is, I'm slowing down because my body is older. But I can still run circles around some of you! (wicked grin) You know who you are.

So now if I have to, I equate power naps as energy naps. I can't do without them. They are a MUST DO. Where as before I might skip them, now it's an everyday necessity just to get through a day. Even the little doze off periods in the evening are a fact of my daily life. Just like most, I have a honey-do list except I'm the honey that must do. If I don't go to the grocery store, I'm scrounging for something to eat. If I don't service my car, it'll stop running.

 My scheduling has been thrown out of whack with road trips and house down-sizing marathons on weekends with my children. But I'm coping with extra naps/doze off periods when they are taking items to Goodwill and Faithworks. Even if I just take a supervisory role, it's mentally taxing.  Sometimes that's worst than hard physical labor. Just separating 17 years of living in this house/40+ years worth of things into donate, sell, and I want rooms of the house means multiple trips down memory lane. This makes everything take twice as long to accomplish. Partly it helps and hurts my grief at the same time, but I realize no matter what I do, it will be this way. Yes, I did say rooms! Since I basically only use three (four if you count one bathroom) rooms of my house out of ten, there's space. I can't believe I had three Christmas trees in my attic!

Big furniture is going out of the door on each session which frees up more space, but I've filled them with bunny cages (grin). They have a room all to themselves now. But as much as I enjoy my animals, they too take a toll on my energy levels. But I have to say, it's taken SIX rabbits to equal the amount of care for energy expenditure that my husband took on a daily basis. The rabbits are part of my healing process. I give them love and get love in return from them. I'm relishing the fact that all this STUFF is leaving my life. Down-sizing has been a catharsis for me even though it is exhausting. So many things on my plate has been tiring also, but soon it will be over with. I figure by November or December tops, it will be done except trying to sell everything. If I thought this house 2,000 sq ft house was too big for me when it was full, it will seem cavernous when emptied. Then I'll know it will be time to move on.

In the mean time, power naps will be my saving grace to get me to the end of each day.

Nothing is impossible.

Sunday Stroke Survival~Tired to the Bone

Chronic fatigue is my added devil from my stroke. Paralysis being #1. All in all if I wasn't so tired all the time, I could actually do more towards recovery and a lot of other things. Compounding my stroke is a bum ticker which also causes fatigue.

I'll admit my fatigue is not as bad as when I had my first stroke almost two years ago, but it is still my Achilles heel in productivity. Just after my stroke, it was a hour long nap, at least, after two hours awake. After month post stroke it was an hour nap after three hours awake. I gradually progressed to five hours awake with one hour nap. All of that is with 6-8 hours of sleep at night.

My progress with wakefulness and energy was set back in December with another small stroke, but not bad. I was at four hours awake and one one hour nap. Thirty minute or twenty minute power naps are like nothing and don't help. Not like they used to. I used to be able to take a power nap, awake refreshed and conquer another eight hours of work. Now I'm back again up to six hours awake and a two hour nap. That almost two naps a day!

Of course, all the muscle relaxers don't help the situation. 80 mgs of Baclofen, 16 mgs of Zanaflex, and Valium, all work against me too. But I've been on those high doses since I got home from the rehab hospital so my body compensated for it. Also with the amount of high tone, spasticity, and Clonus I have eats those drugs up. The February Botox injections have worn off to where my arm is back in its 90 or greater degrees cocked up position, tight against my chest, and almost no possible extension of the fingers. The wrist doesn't move no matter how much Botox it gets. When I mentioned the amount of muscle relaxers I was on to my husband's social worker yesterday, her mouth dropped. She uttered, "And you are still awake!"  Obiviously. I was talking to her.

Having this fatigue and caring for my husband is a mad juggling act with medicines given every 4-6 hours. I push myself to stay awake often falling asleep at my desk and awakening with a start. I imagine the stress and these drug passes are weighing heavily on my fatigue issues too.

I have always looked at sleep as something I needed to do, but could do without. For decades I proved myself right by fully functioning on four hours of sleep a night. I always said, "There's time enough to sleep when I'm dead" and kept on pushing. Now, that's a long forgotten memory. Just when I need it most. A challenge at best.

I found eating kept me awake, but that only compounded my obesity problem. Knitting works, but the last couple of days I've found myself nodding off over my loom. Jerking awake causes nothing but more problems between the high tone, spasticity, and the Clonus. My leg will be bouncing up and down, and my arm will pull up tight against my chest almost to my chin. It takes almost thirty minutes to relax the arm enough to bring it down to a fairly comfortable 90 degrees.

Why is it that when you use one of your paralyzed limbs the other paralyzed limb's tone is affected too? If I walk, my arm tightens and draws up. When I stretch out my arm, my foot will arch more to the inside. It's like the puppeteer's strings are wrapped around each other. Doh! Confused neurons firing into the dead portion of the brain sends crossed messages. I answered my own question, but it doesn't make it any easier to accomplish anything. All of this extra action saps my energy too.

So how do I accomplish anything?

As I've said before, it's all about balancing. I've added tightrope walker to my master juggler status. Because with chronic fatigue, you walk a thin rope of energy and ability to do. There is a long list of things which HAVE to be done.

The Steps

• Know yourself
• Make a list
•  Break the HAVE TO DOS into manageable segments

Once again, I'm using me as an example.

I know me and have had enough practice with my available energy level to accomplish tasks. I also know how much energy I spend doing certain tasks. I use my heart as a monitor for energy expenditures. My heart will override its medicine to control the rate when I push too hard or expend to much energy. I can actually hear my heartbeat in my ears when it gets above 100. It's not hard to count your heartbeat when it's drumming in your ears. I have to sit and rest to get it below 100 because my cardiologist says it puts too much strain on my bad heart. I can see her frowning when I'm at 104 let alone at 150. I do what I have to do first upon waking up my brain so it will function properly.

My Honey-Do List for the week
*Fix breakfast
*Medicine passes
*A diaper change for him
* Feed, water, and love on the animals (rabbits, chickens, cats, Guinea pig, and and dogs) 2x day
*Empty the urinals (I have two so I don't have to do this but four times a day)
*Empty the bedside commode and wash it
Grocery shopping
Computer time-emails, blog, forums, games, etc.
Pick up medicines from the drugstore
Buy two skeins of yarn from WalMart
*Fix lunch or fly to get it
*Fix dinner or fly to get it
*Spend additional time with hubby
Work on Christmas presents (shawls, caps, and scarves)
Buy hubby some more pajama pants
*Check and refill humidifier on hubby's oxygen condenser
*Rehab exercise 2X a day
*Hospice schedule (CNA, nurses, social workers, clergy, volunteers, sitters)
Kill the swarm of fruit flies without spraying
Wash dishes
Vacuum the carpets
Clean the litter boxes for cats and rabbits 
The garden

All the things  marked with an asterisk have to be done daily and sometimes multiple times a day. All others are optional to a point. I look at my list and put numbers to prioritize the tasks and see what can be put off until the next day or next week. It's my front seat/backseat method in infinite detail.

The medicines he can take by himself are in a pillbox for the week. That way I know what I will run out of first for reordering and can tell his nurse when she comes. I never wait until the last minute to do this because she may have to get a prescription signed by the doctor first especially his morphine. Some, like his morphine, have to be measured and given to him.The same goes for my medicines.

Grocery shopping is a HUGE energy expenditure for me with bottled water and soda pop.  This is a one time event that leaves me wiped out for the day. Even with me riding around in the store on one of those scooters, if I can find one. I shop at Winn Dixie because it's an older, smaller store and it's close to the house. I asked the manager if I can use one of the bag boys to help me shop for the big items like Coke Zero (hubby's fav) or water. They load it into a big buggy and roll it up yo the front of the store until I'm ready to checkout. This helps a bunch! But still I'm juggling pennies to buy what I need as I go through the store.

My drugstore is CVS. It is conveniently located across the highway from Winn Dixie and it has a drive-in window. I can either drop off my medicine bottles before hitting the grocery store or call in my refills with a pick up time after I finish my shopping. This is a time  and energy saver. I don't have to park my car, go into the store, and walk to the back of the store to pick up my prescriptions. It's a one-two-thank you ma'am.

I've got this routine down to a science now. I can do this and be home before the CNA leaves. The real chore besides shopping for groceries is getting them inside and put away. Yes, I could lug each and every carton and bag inside, but I don't. I stick my prescriptions into my purse and open the door. I had Triston (#2 grandson) bring my little red wagon from the garden and park it by the front door. The first thing to come in after my purse and cane is the cold stuff for the refrigerator and freezer, and putting them away. After bringing this in my heart is drumming like a rock band, so I need to sit down for a while.

I still manhandle the 24- packs of water because otherwise it would be lift them into the wagon, tugging that weight up the ramp, and then unloading it into the house. That's too much. It's easier to pick one up and put it down several times up the ramp and into the stack of water bottles. Or like I've done the last two weeks in a row, wait until my daughter comes to bring them in. The heat or cold won't hurt them if they stay in the car.

Going to Wally World stresses me out, but it's a necessary evil at times. To give you an idea of how frequently I visit that store...6 times in almost 2 years. It's not a bad store, but it's HUGE! Most times no scooter is available which means walking. With the threat of pressure sores on my foot, that amount of walking is detrimental to my health. In variably, what I need is in the back of the store. So this particular store is a last resort for me. It's too hard to move around. Logistically, it is far easier to go to Family Dollar or Dollar General for most of what I need. AND forget about Target for the very same reason. They take up too much of my energy reserves. Nine times out of ten after a grocery shopping day or WalMart, I have to come home and take an extra nap just to make it to bedtime.

Yes, fatigue is s-o-o-o much fun. The idea of not getting up and putting clothes on at all is a pipe dream. I know many are juggling work and family, but I'm thankful I do not work or have any other family other than my hubby to take care of. I don't think I could do it. Yes, nothing is impossible with determination, BUT there are limits if I'm to do what needs to be done. Some have time limits and others do not. Some times are self imposed and others are not. I tend to have some wriggle room with the self-imposed times just in case I have to change his linens in between the CNA doing it. It's happening more and more. My poor daughter has had to wash all the blankets twice in a month because of them. I have three for his bed.

Having a fatigue problem is a royal pain when life gets in the way. But with knowing my limits, juggling tasks, and break it down into manageable segments, it is doable. Some days are worse than others but it is a constant element in my life. Challenges make life more interesting, with all the hats I wear, and things I face daily that I'll be never bored.

Nothing is impossible with determination.