My husband went into the kitchen to get me two Naproxen Sodium tablets this morning. (My neck and its problems have flared.) My daughter was in the kitchen emptying the dishwasher. They started talking. As my husband’s attention focused on their conversation, the tablets in his hand, that were suppose to end up in my stomach, ended up in his. Oops! Thank goodness he wasn’t holding two of my prescription tablets. He probably wouldn’t have made it to work and would have needed some care himself.
This has got me thinking of more “hazards” and sometimes amusing changes that my husband faces living with and caring for me:
-Putting his back out having to lift chunky me off the floor
-When in a work phone meeting (he works from home) and I’m suddenly shot by severe pain, having my unsavory expletives fly out to his coworkers ears
-Waking up in the middle of the night near suffocation due to one of my abundance of support pillows falling on his face
-Jumping every time his cell phone rings thinking its me needing him to pick me up off the floor
-Morphing his nature from “typical guy” without a clue about “woman attire” to a rather metro-sexual fashion expert– learning from having to pick out my outfits when I can’t…this includes the right shoes to go with them and the correct garments to wear underneath.
-Being approached by single woman who think he’s a single man, because outside of home and attending events, he’s solo most the time. (Wait that one’s a hazard for me!)
I know how fortunate I am to have this guy to help me along this chronic illness journey. It can get pretty serious taking care of someone who is sick and sometimes it can be darn funny! Feel free to share your own stories. (If you are one of those tough cookies who are a care-giver to yourself…maybe you have a story about a hazard you’ve encountered in doing so.)
*Hey its almost the fourth of July. I’ll be tucked away in a nest of blankets in the quietest room in the house when the fireworks go off–our bathroom. I miss our dog who passed two years ago, as he couldn’t tolerate the fourth of July noises either and would hide away with me. Here’s to all of our CNS’s staying as soothed as possible this weekend and to feeling well enough to have some fun.
BEST MASK
by, Shel Silverstein
They just had a contest for scariest mask,
And I was the wild and daring one
Who won the contest for scariest mask–
And, (sob) I wasn’t even wearing one.
One of those days it is…so I picked up Shel Silverstein’s Falling Up and found this poem…it made me giggle…
Gosh, a giggle feels good…especially when we’re not.
There’s something to this poem that relates to being really sick…lets see if I can get my fuddled brain to make the connection. When you’re really sick, you don’t feel pretty and you don’t like to look in the mirror. People sometimes say “you look pale”, or “you don’t look so good”. Your hair usually looks funny. My daughter laughs when she notices the back of my head when I’m really sick, because my hair sticks up when I’ve been laying down for a long time. If you get up the courage to look in the mirror, you might notice, at least I do, half open eyes with dark circles around them and a puffy face. That’s the “scariest mask part”…
When you’re sick it is a whole lot harder to put on your social mask, let alone find it. It is hard to put on your favorite clothes, your power clothes, let alone launder them. It is hard to answer, when someone asks “how are you?… “I’m doing good”… and other socially acceptable things people are expected to say…so you might answer something honest and scary like “not so good”…and if you answer “I’m shivering with pain and really hungry because I don’t have enough energy to walk to the kitchen”, that’s really, really scary….so most of us never really say that even when its true. If we did…the person asking might think we are joking (like playing a “best mask” or best scary answer to “How are you?” game).
So, when we are feeling really sick we can’t wear masks…and sometimes when we’re really, really sick, we can look scary enough and vulnerable enough to win a “scary mask” contest when we’re not wearing one.
I love kids books because they are full of truth, like kids are…and like people who are feeling really, really sick can be.
I often organize my closet when I can’t sleep or creep quietly out to the family room to cuddle up on the couch with my laptop (which I’m doing right now). Since having Fibromyalgia/ ME/CFS, sleepless nights are a common part of life as they change the normal cycles of sleep.
Like a mouse I arose from my bed tonight, careful not to awake my sound to sleep hubby. We have a walk in closet that is off of our bathroom rather than our bedroom. I can turn on the closet light and work quietly without waking him. This week I’m in the midst of Spring Cleaning our closet. I just finished filling a laundry basket with clothes I no longer wear.
Most sleep difficult nights, I’m able to nod off sometime before dusk. When I wake and walk into my closet to dress, I enjoy finding it more organized than when I got into my pjs the night before. I enjoy it most when I forget that I was up working in the night; IT FEELS AS IF I PURPOSELY SET OUT TO SURPRISE MYSELF. (Imagine its similar to how the shoemaker must have felt in the “Elf and the Shoemaker” when on rising he finds the shoes he thought he’d toil over the following day, complete and lined up neatly in pairs.)
What do you do when sleep alludes you?
Here’s a “rerun” of a poem of mine which I posted months ago. It seems appropriate as my brain this past week is stuffed with so much CFS/FMS “fluff”, I’m surprised it isn’t coming out my ears. Maybe if it was, I could pull some out and find my brain!
A Hum or Two
by, Kerry Ryan-Kuhn
Pooh Bear has found me
Came knocking at my door,
Under the pretense of craving honey,
But I suspect there is more.
Perhaps he heard that I, too,
Have become of little brain,
And fluff between my ears
Is all that remains.
Between spoonfuls of honey
He offers me a hum or two,
And tells me that hums and poems
“Have to find you.”
And now finding myself
A poet left with little brain,
I wonder if in the fluff
The poetry remains.
For if poems and hums find Pooh–
And Pooh found me,
I might stop pining for my brain,
And let the fluff be.
This little poem came to me after working with my youngest daughter on an English project about AA Milne’s’, The World of Pooh. After I reread the book, I felt a bond with Pooh Bear, who talks of the “fluff between his ears” and being “a bear of little brain.” Through Winnie the Pooh, AA Milne demonstrates (without intending to) the cognitive struggles that often accompany neurological illness.
Unlike most of us humans struggling with cognitive challenges, Pooh accepts himself with humor and never a judgment. He likes who he is; “fluff between the ears” and all. He doesn’t let it stop him from hunting a Hefalump with Piglet, mooching honey off of Rabbit or cheering up Eeyore with a birthday present of a honey pot with a well-intended message misspelled beyond reading.
In the non-fiction world we live in, it isn’t easy being a human with a once reliable brain that is taken under siege by illness or injury. Simple words often can’t be found or the wrong word springs from one’s mouth instead, e.g. “Can you get the plates out of the computer please,” and “don’t forget to turn off the cupboard!”
Thinking, …oh boy what a feat thinking can be…to string sentences into meaning…the mental exertion can be truly exhausting. Memory is effected. What day is it? What month is it? Geez, sometimes even what year is it! Notes to oneself and lists become essential coping mechanisms.
When I hit the cognitive blips that I do countless times each day, I can feel frustrated and embarrassed. Sometimes though, I think of Winnie the Pooh who reminds me to lighten up, and laugh at my silly self.
Since having Chronic Fatigue Syndrome/Fibromyalgia, I feel like I’ve become a Meterologist. Those of you who have CFS/FMS or similar conditions, can you relate? Does your family ask you about the weather instead of consulting the local paper, online or television forecast? Or are they like my family; they know clouds, rain or a storm are moving in just by looking at you…because you don’t look so good.
I feel a low pressure front before clouds can be seen and without knowing what weather has been forecasted. My neurological system is most affected; my left side (that has weakened with my illness and lost some permanent coordination) becomes weak to paralysis and uncoordinated to uselessness. My brain hurts as if it is a balloon that won’t pop, being filled with water far past capacity. My cognitive processing slows as if my thoughts are moving through setting concrete. Words I want to use hide from me and words I don’t want to use take their place. I feel as if my IQ deflates like a tire with a leak. Often I can not stay awake. Pain flares. My eyelids swell to half mast. My face swells. I am not a pretty sight, nor in the best of moods.
For years I’ve searched online for correlations between barometric changes and the symptoms I experience, and found little. It has long been understood that weather changes affect Arthritis. Recently there is a growing awareness that barometric pressure changes can trigger migraines and asthma attacks…and thankfully, it is understood that it can trigger the pain aspect of Fibromyalgia as it does Arthritis.
Hopefully with understanding of CFS/FMS will come understanding of the correlating weather sensitivity many of experience. I sure don’t know the answers, but I find myself conjecturing when I’m “under the weather”. Perhaps barometric pressure changes cause inflammation of the brain and nerves as they do the joints in Arthritis. Perhaps those of us whose disease process was triggered by a neck injury affecting the spinal cord, experience inflammation in the area of injury, which inflames the nervous system. Medical research ultimately will reveal answers, but it’s going to take awhile. Meanwhile…
I hope by sharing our experiences with barometric pressure changes, we can learn more about this piece of CFS/FMS from each other. Do barometric pressure changes trigger your CFS/FMS symptoms and if so, how? If you are comfortable sharing just click on comments (or “read comments” below.)
