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.
Pillows
by, Kerry Ryan-Kuhn
Pillows behind my neck
Pillows beneath my arms and thighs
Pillows brought in with me
…when I go out to dine
Pillows strewn on the sofa
Pillows slewn across the bed
Pillows holding up my life
…my life with chronic illness
Can anyone else relate to this guy? I’m laying here supported by what seems a million, trillion, zillion, pillows. If I move from bed to sofa, or sofa to bed, they have to come too. We even keep a couple pillows in our truck cab. My husband hates it because he has to help me move the pillows from sofa to bed or from bed to sofa. (I think its also a known fact that a whole lot of men hate pillows (especially decorative ones)… even if they have nothing to do with holding their partner up.)
Today, I’m supposed to be resting and doing nothing else but resting on all these pillows. Its an extra weak muscle day, a neck needs support day and vision blurry day. I was trying hard not to get on the computer, crochet, do anything that requires my eyesight, flexion of my neck, or use of my respiratory muscles.
I got so bored that I did everything I’m not supposed to do. I wrote the silly poem, set up this silly picture, and wrote this silly post. Thank goodness I kept from singing a silly song (which uses respiratory muscles and gets me into breathing trouble. This would be followed by being in trouble with my husband because he would have to get me all set up on pillows in a whole different configuration).
Do you have “pillow mania” 
If so, mild, moderate or severe
Before I get to escalators and elevators, here’s a big stretching hug around all of you for your caring and support. Its a wonderful feeling and a comfort when you’re going through tough stuff, to log into your blog and find your friends have stopped by to let you know they care. You affirm my feelings and have helped me to feel safe sharing all the colors on the colorwheel. So, now in that safety and comfort I want to share some fun stuff from yesterday afternoon (orange!).
I was able to go with my daughter to exchange her prom dress for one that fit. Joy! As you all know, excursions, as such, become equal to a day spent at Disneyland or Disneyworld when we were kids. My daughter and I ended up having a couple laughter opportunities that made it all the better. I want to share one of them, in case it makes you smile and because remembering it makes me giggle.
As you guys all know by now I have chemical sensitivities severely and the mall is like walking into a toxic chemical cloud. We have to be quite strategic as to how we navigate through it, in order to avoid the places that have been doused with the most perfume and cologne. My daughter and I picked an enterance of less toxicity, but without an elevator nearby. (I use a walker so normally we use elevators).
I had this brilliant idea that we could carry the walker up the escalator. I held my daughter’s Starbuck’s cup in my right hand, the hand that works well. She grabbed on to the front of my walker, thinking I’d grab on to the back. I couldn’t because my left arm and hand with their neurological struggles couldn’t grab the walker and my right hand holding the coffee couldn’t grab the railing of the escalator. The walker rolled backwards into me. I watched my daughter try to run down the escalator stairs to “save me”. This didn’t work (if anyone has tried this, you know why), so she rode up the escalator and down the other side, while I moved myself and my walker to let other shoppers, who were wondering what the heck we were doing, on to the escalator.
We devised a smarter plan. This time she folded up my walker and carried the cumbersome thing herself. I held her Starbucks cup (ceramic or we would have thrown it out) with my left side and used my right arm and hand to hold on to the railing. We made it, and had a lot of fun laughing at ourselves on the way to the dress section. I think we should take escalators over elevators more often.
Its Friday. (I’m definitely out of the “time warp” as I know what day it is today). I’m still shaky following my test results. I appreciate that I can write that without self-judgment. Life is shaky…right now we are on a rotating planet which is circling a star which is burning hydrogen into helium (did I get that right?) The chances of being born are astronomically slim…being here is a “wow”. Are you wondering how that relates to anything? I’m not certain, but somehow in this brain of mine, it connects, and reminds me to take myself and life a whole lot less seriously.
Here’s to the simple joys and the little things that go a muck and make us laugh. Wishing you a weekend of being able to do something or a few things or maybe even many things that make you smile.
….and Happy Birthday Mom!
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.
Right now, I am wearing a pair of light blue flannel pj pants, an old white hoodie and one of my hubby’s white t-shirt’s, which hangs out from under the sweatshirt. On my feet are a pair of fuzzy- wuzzy grey and white striped socks. I’m wearing one cute thing–my favorite hoop earrings. I’m not wearing a bra. Lately when I’m feeling crashed and flattened, I find that locating a bra, putting it on, hooking it in front, then twisting it around and putting my arms in the straps, demands more energy than I have… so, ha!…I’m looking flattened too!
How about you? Right this minute…what are you wearing?
When I was little I remember my parents getting a call to a “come as you are party”. This gave me the “whatcha wearing now?” idea. You were supposed to wear to the party whatever you were wearing when you answered the phone and received the invite…your robe, boxers and slippers, gardening overalls etc…
Since a good lot of us are at least some of the time homebound and bedridden. Since often getting to our showers and wardrobes can use up more energy than we have some days, I thought I’d throw this question in a post now and then, cause I think we probably have some fun and unusual answers…
(Posting photos would be all the more fun, but I’m not that brave…)
Writing with a brain that thoughts are plodding through like rain boots in mud is not easy. I woke this morning thinking my brain was not up for stringing words together. When rain storms roll in and roll in and don’t stop rolling in, (like they have been here in the NW), my body and brain can not handle the pressure changes and my function level drops to low lows. I’m a bit like our lawn right now-soggy. I’m soggy in brain and body.
I thought I could handle a quick check in on my blog for new comments and found that Dominique at 4 Walls With a View, had indeed left a comment and a perfect one for this particularly slow morn. She nominated my blog for an award. Thank you Dominique! In so doing, she also has given me something I think this brain can handle writing about today…receiving the award requires writing ten things about yourself that you think their readers might not know. So, I will go plodding through my mind in search of ten things about me…
-According to the NY Times approximately 12% of the population actually like fruit cake. I am in that 12 %.
-I was a lifeguard in my late teens/early twenties. Though I never saved a life and spent most of my time collecting ultra-violet rays and hoping I was looking cute in my red suit, I was so proud of myself for earning that lifeguard certificate. I had to “save” a two hundred pound dude who was laying at the bottom of the 11 foot swimming pool. This included lifting him out of the pool, with not a scratch on him. Way back then I was a little thing, 115 pounds, and I felt like one strong, little woman.
-I started out a nursing major in college. I switched majors the day before I was scheduled to do my first catheter on a guy. (My what a wimp was I!)
-Way back when, I sang so much that I drove everyone around me nuts…that is until I was on a stage…ie. at our county fair when I stood beside my guitar teacher ready to sing back up to his lead (Gordon Lightfoot-”I can see her lying there in her satin dress…”) or when I played the part of Angelique in “The Imaginary Invalid” which included a small singing solo… NO SOUND BEYOND A WHISPER could I produce. Consequently I wasn’t given many solo ops after that. (Due to a Neuromuscular condition-Probable Myasthenia Gravis, I can no longer sing. My lesson, don’t let your nerves stop ya from doing what you love!)
-I like liverwurst a lot. If it wasn’t full of nitrates and fat, I would eat a liverwurst sandwich everyday.
-I am dotted with “purple things”. They are genetic benign little tumors (”glomus tumors” officially, they grow off blood vessels and wrap around nerves). Thankfully you can’t see them unless at close range and most are in areas like the inside of my arm where they are hard to see. They are so rare, that once when I went to a foot surgeon to have one removed from my toe, the doc. called everyone in his office to see it.
-I used to be known as “The Mosaic Lady” at local thrift stores, because I would go in weekly and buy used ceramic plates to bust up and turn into art. My weak muscles have stopped me from mosaicing, but I still love that title.
-I have to write lists to remind myself about anything I need to do. CFS makes the short memory much shorter. But, I have a freakish long term memory in which I can remember every phone number and minute details about people and events from when I was a kid. Just yesterday my husband was trying to remember the name of the wife of a friend of his family that he hasn’t see in over twenty years and that I’ve never met, but must of heard of years ago, because her name came right out of my mouth. Recently I reminded my mom what my dad’s exact salary was in the early ’70’s–I had overheard them talking about it–I would have been about ten at the time. Hmmm….I guess I’m freakishly nosey too.
-During a college summer break I worked as a camp counselor, sleeping under the stars on a quarter inch pad each night. Some nights I awoke to racoons standing beside me, just staring at me.
-I who won’t watch a horror movie, love to read Stephen King’s books.
-I watch the Bachelor…even though I think it is staged, shallow and cheesy.
That was so darn much fun…you know why? Because it was all about me…how humbling to be human…and though I try to be above such things as “all about me”, I’m so not.
This is a new blogger award…I probably should be disqualified because I’ve been around awhile, but since I seem to be in an “all about me” space, I accept it with gratitude. My nominations are two new blogs…started, or at least discovered and added to my blog list this past year. (Dominiques’s blog 4 Walls and a View is an awesome new blog!) Kudos to all my favorite bloggers who I didn’t nominate. I hope you know you make this journey with ME/CFS easier and a heck of a lot more fun…and I know you understand the limits this illness puts on a CFS brain. This soggy brain of mine has fuel remaining just for nominating two new blogs today…
Tired of me
Readers, feel free to share 10 things about you in the comment section. It’s fun…let yourself be all about you!
“Yocadita” is an acronym I just made up. It stands for the part of me that incessantly yells, “You can do it anyway!”
My “yocadita” has been good to me. She has enriched my life abundantly, giving me confidence and perseverance. She has helped me reach goals and dreams and to surmount adversity. She is also one tough adversary, especially now that I truly physically and often cognitively can’t possibly, without severe negative consequences to my health, “Do it anyway”.
This week my “yocadita” is full of energy. She is yelling through her megaphone from behind the sofa like a super duper, rah-rah cheerleader. This is what she’s chanting that “I can do anyway”, this week.
–You can still be the mom who comes in and helps after your grandbaby is born. You can fill your son and daughter in-law’s freezer full of casseroles. You can get to stores and collect the baby items they haven’t been able to get (they both work and it is looking like the baby is going to show up early). You can get to their apartment a couple mornings a week and help however you can. So what if you are homebound or your arms are too weak to fold your own laundry, somehow you’ll find a way to get to their place and fold theirs. You can do it anyway!
–You can keep up in the online world, blogging, facebooking and emailing. Stay connected Kerry, keep up to date on research and advocating for chronic illness. Keep on writing your creative stuff. Don’t let the subsequent worsening of your illness, that the cognitive exertion causes stop you. You can do it anyway!
–You can look slim and fit. Don’t let the fact that you can’t exercise or move much stop you. Take out the yoga mat, climb the stairs at least three times today. Maybe this time it won’t flatten you for weeks. You can do it anyway!
Wow, writing that felt good…and hey, its quiet, no yelling coming from behind the sofa. I think she’s even slinked out of the room. I want to add her as a post category and out her whenever I need to. Yeah! I used “want” because truth is I might be too exhausted to do that today and then I might forget to do it tomorrow and the day after and so on.
My “yocadita” would have said I “will” add her as a post category. Outing her is working for me…reality is winning! Writing this post has used a good part of the daily trickle of energy that CFS allots me and I still have to copy and paste it into my blog. I’m tired, really tired…no casserole making today…perhaps if I can I will get that load of towels waiting on the laundry room floor into the washer, but if I’m too exhausted, I’m not going to do it anyway.
The Smile Makers
by, Shel Silverstein
The grungy, grumpy, grouchy Giant
Grew tired of his frowny pout
And hired me and Lee to lift
The corners of his crumblin’ mouth
That was last year—and we’ve been here
Sweatin’, strainin’, all the while.
Sometimes it sure can be hard work
To make somebody smile.
Just love this Grumpy Giant’s want for a smile and proactively doing something about it by hiring guys to help him. And, can’t help but admire “me and Lee” for working hard to give him one. We are all smilemakers and smileneeders.
“Grumpy, Grouchy, Giant” had to hire smilemakers. Before the economy came to a halt I think a good lot of us hired smile makers (big screen tvs, fly in the sky vacations, shop til we drop etc…) A perk of these tough financial times is finding free smile makers again…
Anyone want to share a freebee to a smile?
A couple of mine:
-My favorite- I just love hanging out with my family talking and laughing, whether it’s in the family room or the backyard or a nearby park.
- When I’m alone- watching critters in the backyard…there’s always something going on… crow and squirrel fight, Smokie our cat and squirrel chase, sparrow meeting at the top of the spruce, complete with head hancho (on the tip top) and branches of the organization below. There were sparrows who kept trying to knock the President off the top and take the position for themselves, and sparrows who seemed as content as can be on the branches below. Yep, always a free smile give away in the backyard.
When someone invites me for an outing, I feel like I imagine a dog feels when it’s owner grabs the leash for a walk or takes him along for a ride in the car. You know that look on a dog‘s face when he has his head out the window and his ears are flapping in the wind? He looks like he’s in a state of bliss. I think I understand how he feels.
Early this afternoon my hubby (who works from home) took a break and came downstairs. He looked at me sitting on the couch where I’ve been parked for most of the week, and declared,” We’ve got to get you out of here”.
If I had a tail it would have been wagging. I put some lipstick on my neglected face, slipped on my tennies and grabbed a bottle of water. We set out in the car for a nearby park with a path that takes us to the river. On the way there, just a few minutes from our house, we noticed what looked like a new road pointing directly towards the river. We followed it and sure enough it ended right at the water… so close you could almost drive straight into it…and not even five minutes from our house. Love that.
We set out on the walking path that wanders with the water, our eyes soaking in the new found scenery. How green everything is this time of year, the grass, the leaves, even the river water.
I can take a walk along the river because not only do I have an awesome partner to get me there, but I have a cool walker. It has a seat and a basket that holds my water bottle. It rolls real even and keeps me steady. So we walked and I rolled. We were so engrossed in watching the high river water, the beaver blemished trees, that we went a bit further than I should be walking.
We turned around, and that’s when the raindrops started to fall. Big, plump, cool (but not cold), raindrops. They soaked into our hair, our clothes and rolled down the panes of our glasses. If I coulda danced I woulda.
I’m back on our cozy couch now, hair damp, but feeling warm and content. (Hmmm…bet this is how a dog feels after a “ears flapping in the wind” ride).
Envision this, there’s a middle age woman (me) with CFS and exercise intolerance that accompanies it. She tries hard to get in any movement she can–it is hard to keep one’s weight down and body healthy and fit when you can’t aerobically exercise (she’s a bit vain, which is an understatement).
So, she steps on her treadmill whenever she can, setting it to ultimate SLOW and walks at a turtle pace. She’s worked herself up to ten minutes these past couple weeks without flaring herself up and she’s feeling pretty good about it.
One night this week, just before going to bed , she decides to get some more movement in. She’s exhausted, but her husband’s in the room. She knows if her legs stop while she’s on the treadmill, her husband can help her from treadmill to bed. If she was alone she wouldn’t do it…
Sure enough about eight minutes into her walk, her legs slow down to near stopping. She’s having a hard time making them keep up even with the slowest setting on the treadmill. Her arms are too weak to raise to the “turn off” button. She calls to her hubby, “Babe, I’ve gotta stop. Can you help me off of here”.
He comes running knowing that when her muscles stop, they stop quick…which means his having to drag or carry her weight to bed…grueling! He sees the button which slides to the right to turn the treadmill on or speed it up. The button is so far to the left, set so slow, that it confuses him…
He slides the button quickly to the right, kicking the treadmill into full speed. The vain, exercise intolerant, wife goes flying off the end of the treadmill. The hubby who is not exercise intolerant and in excellent physical conditional reaches for her as she shouts “Are you _____trying to kill me!” (Blank not a word I use unless in a sudden dangerous situation which is out of my control).
Mid-way between treadmill and floor, nimble hubby grabs her and saves her from the fall. And, that’s why I choose to do stupid things, like walk on the treadmill when my body can’t hack it, only when my hubby is around!
Made for a good healthy laugh for both of us…but wouldn’t recommend trying this at home–(smiley face-if I had access to icons).
