Episode 64: Still Truckin' On, Part Deux -- Some Days, Not So Much

If I sounded as if I'm highly productive in life in Episode 63, this episode is the reality check.

I've been in bed, mostly asleep, for the past several days. That's the joy of chronic disease. On top of the hypersomnolence, lack of motivation is a serious aspect of my condition and, as medical research has demonstrated, a part of most if not all neurodegenerative diseases.

I watched an interview with Linda Ronstadt on YouTube the other day.  She was diagnosed with Parkinson's Disease (PD) a year or so ago and, sadly, can no longer sing at all. She says her attempts sound like shouting, if they can be qualified at all. So sad. What a songbird she was.

Ronstadt also mentions severe lack of motivation as an aspect of PD, which my quick PubMed/MEDLINE search confirmed. Lack of motivation--exclusive of depression--is also found in Alzheimer's, MS, and other neurodegenerative diseases. Since I know I have some sort of neurodegenerative disease but don't yet know exactly which one, this confirms what I've known all along--this damned lack of motivation isn't because I'm lazy or depressed.

I generally don't feel sad, though I have occasions when I do, particularly when my energy is utterly zapped. But I don't stay in that state for long; before long, hope and happiness and productivity return.

Medical science has concluded that this "apathy"--lack of motivation, not necessarily lack of caring--is not due to psychological stress (though surely that adds to it) but is part and parcel of living with neurodegenerative disease.

The technical explanation for apathy in neurodegenerative conditions is explained in Behavioral Neurology of Movement Disorders, Volume 96, edited by Anderson, Weiner, and Long, "Across diagnostic groups, apathy is related to functional disturbance of the anterior cingulum, an area with reciprocal connections with limbic and frontal cortices and basal ganglia structures" (2005).

Our brain's white matter (as opposed to gray matter) is made of connective fibers that "transmit information among neurons within or across different brain regions" (Neuroscience Research Australia). My latest MRI shows far too many white matter lesions in my brain, which correspond to the disconnect there among the regions responsible for motivation.

In other words, the parts of my brain responsible for motivation just ain't talking to each other anymore. The chain is broken. I'm fighting not some personal failing but the dysfunction of my brain. This is a fight to the death.

As my previous episode made clear, I hope, when I am both mentally and physically able to do so, I keep myself productive. Most of that time is spent baking, sewing, or embroidering--quiet activities I've always enjoyed. I'd like to spend more time reading and writing, but unfortunately I spend an inordinate amount of time on the Internet browsing topics I enjoy, a time suck that can be done comfortably in bed while propped up on pillows.

I'd also like to spend more time hanging out with friends, and hiking, and going dancing, and a lot of other activities I used to regularly enjoy.

But in my days of "down time," even the Internet doesn't call me. Lying in bed and staring at the wall is sufficient, if mentally uncomfortable because I really hate doing that, on those days.

And so I fight those times, when I'm able to. When I can't, I submit. And hope I can fight through it another day.

I'm planning to take a class this fall, as I'm very close to a PhD as far as coursework goes. I don't know if I have it in me for the long haul, which will include getting re-certified in a foreign language, a major book reading list and oral exams on the readings, and, of course, the dissertation.

And I can't manage more than one class per semester, hardly a full-time load. But if I'm able to do so, I'd like to keep going. Deadlines imposed on me are helpful, or at least used to be. I've lost my ability to meet some of my deadlines. It's difficult anymore to be a "self-starter." But I do force myself most days.

Then there are days like the last three, when I've been able to do nothing more than lie in bed or on the couch. Yesterday, my diet consisted of one pack of Ramen noodles and, much later, a Stoeffer's Cheddar Potato Bake frozen dinner. Not enough to keep body and soul alive, that's for sure, but I not only didn't feel like fixing anything, I didn't really feel like eating anything.

Oh, I drank a good bit of ginger ale, too--all this sleeping is leaving me dehydrated, as my pee unclearly shows. I've become addicted to ginger ale--at least it beats my old addiction to Pepsi, since there's no caffeine in it. I know the purists will tell me the sugar is what's making me so sluggish, but, hey, I need some pleasure in life.

Speaking of pleasure, I've figured out that if I manage to actually have sex (an increasingly rare occurrence these sad days), I sleep pretty solidly for a couple of days afterwards.  Two weeks ago, after a fiesta, I slept for 31 hours straight; last week, after similar rapturous activity, 24 hours straight. As I've discussed before, my stamina is so bad that sex is now leaving me weak and out of breath almost before we start.

And, obviously, for quite a while in the afterglow.

But we must truck on.

We must not give up on life.

So, most days I force myself. No, not to have sex every day--though Honey and I went at it, often multiple times a day, for the first five years of our relationship. Hey, maybe that's what wore me the hell out!

Anyway, most days I force myself to do something productive. And, perhaps, like with sex, when I finish doing that productive thing, my body goes into recovery mode. Which means sleep. And lethargy. And total lack of motivation. As I describe it to Honey: "I'm in total slug mode."

I don't want to be there. It's not a pleasant place to be. But when there, nothing pulls me from the fugue. Nothing compels me to become vertical rather than horizontal.

Fortunately, to date, this state is temporary. Eventually, perhaps when my body finally feels as rested as it can be, I do turn to something productive. Eventually, I'm even in the mood to have sex.

The best possible thing for a person with chronic disease is a partner who is understanding. Honey knows this is out of my control, and he is as patient as a saint. Of course, I turn him over to his cyber girlfriend(s) when I'm in this state--and, frankly, I'm grateful for their standing in. Or lying in.

But not all of us have the gift that, somehow, the Universe has bestowed upon me in the form of a nurturing, loving, patient partner. Therefore, I recommend a fine article, "Brain Fatigue 101" (including that caused by neurodegenerative disease), by Linda J. Dobberstein. I especially like her recommendations for easing that fatigue, many of which involve communing with nature. I find a day in my woods and gardens does much, perhaps more than anything else, to relieve the exhaustion and "apathy" I feel far too frequently.

What we need today is more time spent in nature, even when very sick. I can't think of anything that eases the mind and soul better than that.

I might brag about my accomplishments, but make no mistake about it: I'm using every bit of energy in my body just to get through my bad days. I've had no greater challenge in life than staying positive and productive in the face of chronic disease.

And I know exactly what I need right now: a day in my woods.

Episode 63: Still Truckin' On -- Pursuing Interests to Forget About Health Problems

I'm tired of discussing health problems on The Mary Dell Show. I never intended it to be all about my declining health, but that issue has dominated my life and thoughts for the past couple of years, so I've defaulted to that topic.

Problems continue, including an ambulance ride to the Emergency Department earlier this month thanks to breathing, heart, and blood pressure problems and even more disturbing signs of losing my language abilities due the neurodegenerative stuff going on--but I'm BORED with all of that!

For now, I'm putting health problems out of mind by concentrating on hobbies and interests I've always had but haven't had much time to pursue. I still don't have a lot of time in any given day since I sleep an average of 15-17 hours in a 24-hour period, but I want to make my waking hours worthwhile whenever I feel up to it.

First is sewing. I learned to sew in eighth grade Home Ec at Rollingcrest Junior High School with Mrs. Poole. Mrs. Poole was a cool teacher who showed us how to do stuff and then would let us go at our machines while she worked on her own projects. First, though, she had shown us how to do our steps so well we could work fairly independently.

She let us talk about anything as long as we were working, and we quiet ones listened to the fascinating commentary of one girl who just loved to talk. I remember her saying how great the song "Benny and the Jets" was--a surprise in those days when our school was somewhat divided on racial lines, and this gal was black--and that Elton John would be on Soul Train. I remember thinking how cool all of that was. Meanwhile, Mrs. Poole worked on a big, fluffy, fringey white jacket. She was that good.

I then began making a lot of my own clothes. It was the Seventies, when peasant dresses and hippie clothes were popular and homemade clothes were valued. When I was nineteen, I made my wedding dress and four bridesmaids' dresses, and I stopped sewing for decades. I'd had quite enough, thank you.

"Paisley Callie"--Given to my Honey's
grandniece, with FUN "Paisley Jungle" 
fabric by Kaffe Fassett.

I loved my wedding dress pattern, from Vogue. And the part I loved most was the lace overlay to the bodice and the unlined lace sleeves with bell cuffs and tiny pearl buttons for closure. I'd asked my sister, a bona fide hippie in those days, to be my maid of honor and told her she could go out and find a dress she liked. She came back with a dress that shocked me a tad. I'd pictured some sort of frothy bridesmaid-y frock, but she'd found a navy-blue gingham halter dress with an embroidered collar.

A BEAUTIFUL dress.  A dress that would be exactly perfect for a wedding if I were having one today. But back then, a mere 19 years old and, at the time, rather a traditionalist, I was getting married in a very conservative church I'd given up all my sense to join. Halter dresses were a definite no-no. However, this was my wedding, and if my sister wanted to wear the dress, so be it.

I hadn't planned on bridesmaids, but my hubby-to-be had four younger sisters, and it seemed a shame NOT to include them as such. So I then had to seek out a pattern similar to my sister's dress, and I made them lighter-blue gingham dresses with eyelet collars. They also wore cute white floppy hats, though my sister wore just a flower in her hair.

Close-up of "Paisley Callie"

In the midst of making those dresses, I thought, "I'm going to look wrong with my long sleeves with everyone else in sleeveless halter dresses." I'd just finished my sleeves, with their pretty bell cuffs with lace-scalloped edges, though I hadn't yet added them to the bodice or sewed in the pearl buttons.

And then I thought, I can't use these sleeves. So I made facings and wore my dress sleeveless instead. It was lovely, but I did miss those sleeves! I still kind of do to this day, though the marriage is long, long over. I should have just put them on the dang dress! Silly, silly me.

Today, it seems, a resurgence in appreciation for homemade and handmade items has occurred. To assuage my blues over never having had a baby girl (though I wouldn't trade my two baby boys-now-men for anything!), I started making toddler dresses. Or baby dresses. Depending on whether or not a one-year-old is toddling, I guess. I chose that size because I love that time when babies are just learning to walk. And these little garments take a lot less time to whip up than a full-sized dress.

"Garden Frock" - with WONDERFUL
fabrics--I just wish I had the
names of the fabrics and designers, but
I don't. That top fabric is to die for,
but that was the last of it for me,
and I can't find it on the Internet.

Close-up of "Garden Frock. I ADORE the top fabric--
if you look close, you'll find bumblebees and dragonflies.

The amazing thing is that the machine I'm using is a little Kenmore my father gave me for Christmas in eighth or ninth grade. It's still running like a top, and I've only had it professionally cleaned once. Sewing makes me feel closer to my father. He enjoyed watching me lay out fabric and cut out pattern pieces, which I had to do on the living room carpeting to have a big enough space. Dad would sit in his chair in the evenings with his beer or martini and watch this process, my least favorite part of sewing. One Christmas, either before the sewing machine or that same year, Dad gave me a good set of sewing scissors. "I've watched you wrestle with those dull scissors all this time," he said, "and it's time you had a proper pair of scissors!"

What a good present. The best presents are those a person chooses based on a need they've seen in your life--and I'll never forget that thoughtfulness on Dad's part. And I learned immediately to value a good pair of scissors. It's all in having the right tools, and my dad, an engineer, understood that.

"Happy Flowers." This was so fun to make.
I also contrasted these fabrics on a purse
I made a few years ago--both are now
available on Esty at my shop,
Woodlands Cottage.

Every time I lay out and cut out my fabric, I think of my dad. It makes the process a lot less tedious. And every time I sew on that little Kenmore, I think of him. Yes, my mom liked my sewing, too--she was over the moon about an apron I made her for Christmas one year--but this is one area in which I know my dad was proud of me.

In my little town is Mountain City Traditional Arts (MCTA), a store that features the arts and crafts of local folk, mostly old-timey products such as quilts and dulcimers and crockery. Our university's Appalachian heritage program runs the store, and the person in charge is a friend who is a Sociology professor at the uni. She "liked" the photos of my dresses on Facebook, and I said I'd like to make some "old-timey" dresses out of ginghams and calicos, etc., as well as some bonnets and head kerchiefs to sell at the store, if she thought they would, and she replied, "I know they'd sell!"

And so I've been whipping up these fun little frocks and headgear for the past few weeks, trying to get some inventory together for my display. The store is on hiatus for a few weeks, so I have a little time.

"Cherry 'n' Checks." I adore cherries on baby
dresses, so when I saw this pink cotton homespun,
I knew it would be perfect for my traditional
arts line, and it is! This dress has plastic
cherry buttons, a crochet flower hem, and
a full slip. Currently on sale on Etsy at my
shop, Woodlands Cottage, but will be put
 in a local store when it re-opens.

So here are a few of my dresses for the traditional arts store. I used old-fashioned fabrics such as gingham and homespun, but I also updated them a bit for babies today. I think they're adorable, if I do say so myself! A few of these dresses were made before I thought of selling them at MCTA, so they are with more modern prints. I had put them on Etsy, but I think I'm going to send them all down to the store. Sewing is a "traditional art," no matter what the fabric!

Along the way, a brilliant idea occurred to me. Our town gets tourists due to a scenic train that stops here. Folks wander into town, and I'd imagine MCTA is one of the stores they "hit" most. But what if young parents forget to bring something to put on their babies' heads on a sunny day? Baby bonnets might just sell--but even better might be little head kerchiefs for tender little heads! So I've been working on both, and will also do kerchiefs for girls and women.

"Gingham Flowers." I am in love with these gingham-look buttons, and they finally arrived after I'd ordered them on E-Bay. I love
how they look on this little dress!

"Gingham Flowers"  I used an "old timey" gingham
updated with fun, fresh flowers.Tiny eyelet trim 
on hem and cute plastic gingham-look buttons.
Available on Etsy under Woodlands Cottage.

My model is a bunny that once belonged to
one of Honey's kids--I need to send the
kerchief to his niece to try on her new baby--
Gotta get the size right before churning these out!

However, posting the dresses to Facebook has left me indentured (in a good way) to two friends--one asked me to make her a garden party dress, which I'm in the midst of doing, and the other asked me to make dresses for her six-year-old nieces. Tomorrow, she and I will go to the fabric store to pick out patterns and fabrics--SO much fun! And the other friend picked the most fun, fabulous peacock fabric--I'll post a photo of that and hopefully a photo of the dress, with her in it, preferably, when it's done!

I've missed working on my toddler dresses, to be honest--but I want to do this other work as well. I've never had to adapt a pattern because my body was always "off the rack"--tall and slim. (Alas, the slim part is not so true anymore.) Sewing patterns were made for me. But this is a skill I've wanted to develop, and I appreciate my friend's giving me the opportunity to do so without a lot of pressure going with it. I'd planned to charge her $20 for my labor (dirt cheap, I might say)--but I've decided to just give her the dress. Buying the patterns and fabric is not cheap these days, and I'd brought a 20 percent off coupon that had expired the day before, so we couldn't use it. I'll just let her be my walking advertisement--IF it turns out!

Kerchiefs are traditional Appalachian headgear,
but I've updated the concept with some fun fabrics.
Each kerchief will have contrasting/coordinating
fabrics and will be reversible.

And traditional bonnets, of course! These are ALMOST done.
I'll probably turn out a few of these with fun fabrics, as well ...

A decade or so ago, I made dresses for my nieces. They both loved to play dress up and become characters in their books, and they were going through the Little House on the Prairie" series, so I made my older niece a prairie dress and bonnet. I then followed up with a colonial dress and bonnet for my younger niece. Aren't they adorable? [photo to come]

Many moons ago, I'd also made a prairie dress for one of my ex-husband's sisters, long before the wedding, actually. She wanted to learn to sew. She was about 11, and we made a pretty prairie dress she wore for a play. She later gave me the dress, so I'll post a photo here soon!

I also made both nieces nightgowns with matching ones for their American Girl dolls. A friend told me I should think about making doll dresses as well as the toddler dresses--though American Girls are really for an older set.

I decided to do a line of "Appalachian Girl" doll dresses to sell at MCTA, and I will put on the sales tag that I'll make a matching girl's dress if contacted. I researched American Girls and was sad to see that Kirstin, the prairie girl doll, had been discontinued. Boo! But that doesn't mean little girls can't imagine their dolls as girls living long ago on the prairie or in these Appalachian Mountains.

I've been doing a lot of crafts lately, but, with my blazing ADHD, I've had trouble finishing products. But I'm turning out baby dresses lickety split!  A few years ago, I did a line of purses that sold in a local arts gallery until it closed. I was proudest when a gallery owner from out of state purchased one of my embroidered purses. I'll post some photos of the purses, too. I came up with a fabric version of Van Gogh's Starry Night I'm particularly in love with. It used to be in a number of Etsy treasuries, but I'm no longer sure I want to sell it, so I don't have it on Etsy anymore. I have a few still hanging around, literally. I need to get those on Etsy one of these days.

So, I AM staying positive and being productive despite the daily trials of chronic illness--being short of breath and being hypersomnolent, among other fun symptoms.

But I've also decided I need to exercise my brain, since it's decline is the scariest part of all my symptoms. I've always had a good mind, and I don't want to lose it entirely. So I reapplied to my alma mater where I'd completed a Master's Degree in English and had completed a number of classes toward my PhD.

And guess what?  I've been readmitted, and I may only have three more classes to take to finish my coursework!  I was amazed I am that close, so it would be dumb not to finish it. I'll never have the stamina to teach full-time again, but even if I'm unable to teach a class or two in person I should be able to teach online. And having the PhD instead of just the Master's will really help in getting those jobs. I'd hate to lose all that I learned in the field until now.

I'm hoping exercising the brain will prolong its integrity and no do the opposite. If I can't handle the course work anymore, I'll give it up--but I do have to try.

So, there IS hope after being diagnosed with chronic disease, even neurodegenerative disease, and there's no reason to wallow (any more than you have to, and, yes, I do wallow when I have to). I try to get something productive done every day, and even if it's a small thing, I count it as a job well done.