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.
- Know yourself
- Make a list
- Break the HAVE TO DOS into manageable segments
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
*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
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
Vacuum the carpets
Clean the litter boxes for cats and rabbits
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.
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.
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.