Lenkaland

Today I woke up thinking, I am not strong enough. I am done. I am done managing the tricky moments, done negotiating, done rationing my energy. Done worrying. Done working so dang hard just to feel like I can barely keep up. Done. Done. Done.

And the first few hours were tough. Winter has arrived, all pretty gloomy clouds and chilly temps. Heavy rain and indoor play.

And we are on Month 11 of unemployment for my husband. And he has his own story to carry. So when I shared mine, he said, well, you think that’s tough, let me tell you about the job market…

But I couldn’t be his rock today. Today I crumbled. Because I was not strong enough. Feeling sorry for myself? Yes. Am I allowed? Yes.

Not every day. Not even every hour of a tough day. But this is no easy twist of perspective, this journey with CMT. This is a long, demanding journey. And it wears me down.

I don’t even have a Mighty Lament these days. I am noticing again how, with the temps dropping, my energy is even more limited. And I notice how emotional, mental, and creative energies can sap my physical strength. That is more adjusting. Constant adjusting.

No, it’s just that… I am tired. The sunshine will return and I will be grateful for the skills that remain, and enjoy the quiet moments, and savor time with my wild children. And it will be sweeter for these tough days that test me, that strip my logic away, that push me to a place that could be called Despair.

Except that time doesn’t wait. And the world keeps turning whether I am strong or tired. And I find that I am stronger than I ever dreamed possible. I will rise up.

So I had an idea. A little escape. Because it can get stir-crazy in this CMT world. And it can be easy to turn to medications for escape. Except those can cause more trouble in the long term. So what can I do to make each day special? To remind myself of simple, fun, easy days?

Today I made peppermint hot cocoa with mini-marshmallows. Little things. Did I mention that we are broke? But, still, ways to escape. I will keep sharing them as I go along. Perhaps we can inspire each other. How do you escape chronic illness, of only for a few moments?

I feel better now. Stronger. Clearer. Capable again. I better drink this hot cocoa before it gets cold.

Oh, yesterday’s escape. Photos of raindrops sparkling. Photography gets me looking outside myself. Noticing the beauty all around.

Wishing you a joyful day!

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“I think we underestimated your neuropathy.”

My surgeon said this a week into my recovery last May. After the worst week ever. His words could be the story of my life.

It’s easy to underestimate my neuropathy. You can’t see it. You can’t measure it very well. Even I forget the many impacts of CMT. Lately, my CMT gets underestimated (by me most of all) when I get sick.

I don’t remember issues with getting sick in my twenties. I caught a cold. I got better.

In my late twenties, I developed bad allergies. I was diagnosed with asthma and given inhalers. In increments of a few years, I got my Chronic Bronchitis diagnosis and I started getting flu shots.

These days, I just can’t get better without serious interventions (antibiotics, days of downtime). I had hoped that the issues around my surgery (damaged spleen) were resolved, so my immune system would be back on track. I guess not. This cold sank in deep. Yesterday the doctor loaded me back up with inhalers and antibiotics. I feel a little better today. But I could rest a week. Doing nothing. Which says a lot for me, because ‘nothing’ is my most challenging activity.

I don’t have any research to connect CMT and challenges with illness, but it makes sense. A system that’s working its hardest just to get through the day would have a tough time allocating resources to fight a cold or flu virus.

And stress aggravates illness. I know that. I don’t need scientific proof (which is hard to quantify effects of stress on ourselves). I know that in my own reactions. And I am carrying long term, heavy stress. My husband is on month 11 of unemployment. The one possible ray-of-sunshine job opportunity disappeared. My boy is a busy three and a half year old with lots and lots of energy. My girl is navigating third grade with reading challenges. My class at school is fun-busy-learning.

I’m not getting a lot of downtime at all. And when I carve out the downtime, I feel guilty or overwhelmed.

So what do I do?

• First, stop beating myself up over it all. I get to feeling like I should be able to manage everything, like getting sick or tripping is part of my own bad decision-making, but I need to take a kinder approach. I do my very best. And I cannot always outsmart or manage the CMT. It is a rollar coaster and I cannot predict every turn.
• Do the ordinary things like take vitamins, get lots of sleep, eat well. Practice healthy habits.
• See the doctor earlier. I tell myself this every time, and every time I feel like I’m exaggerating my symptoms, so I wait for another week to pass and call when it gets really bad. Don’t go there.
• Downtime. Don’t feel guilty for downtime. (this is the toughest of all for me)
• Stay warm (as much as possible)
• Ask for help. This can be tricky because I don’t always know what I need for help. But I did call my mom on Sunday and asked her to take the kids for awhile. And my husband brought me chicken soup. Little help can make a big difference. And I know that I get proud sometimes, or I feel embarrassed, like I should be able to handle it all, but that does more damage in the long run. Help is a good thing.
• Say no. Or trim back on scheduling. Or, however to say it, slow down life. I tend to schedule my days through the winter just like summertime. When the reality is that winter demands a lot from me. And what is possible in summer- chores, social activities, and creative projects- may be too much for a winter day.
• Sleep.  Get enough.  More than enough. Sleep is wonderful.

A good place to start. The medicine is doing its magic and I feel the fog clearing. My main goal is to be mindful. Thoughtful. Respectful. I will not underestimate my journey. I also will not stop traveling on, experiencing and digging into the juicy stuff of life. Museums, parks, public spaces where germs thrive. I’ll bring antibacterial gel. I could put that on the list with washing hands. That feels like common sense.

I suppose as long as I’m teaching, and I have kids, I will be exposed to lots of germs. I’ll keep being careful. And hopeful.

And I won’t underestimate the big work that it takes. Just to be me.

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Always something

I visited the neurologist yesterday craft a winter-plan.  Winters are crazy-challenging for me.  ”Why haven’t you moved to Palm Springs, yet?” the receptionist teased me.  I am old before I’m forty .

Anyway, given our finances and the fact that I like this area, we aren’t moving just yet.  We are so underwater on our house (owing more than it’s worth) that it will be a long while before we can leave.  We’re the generation that bought in the boom and inherited the bust.  Then lost our jobs.

But we’re holding on.  That’s enough for now.

And I’m paying a ton of money each month for insurance, so I figure I should use it.  He did the basic tests- reflexes (none) and grip strength and resistance measurements.  Then he paid attention to my knee.  ”Does this hurt?”

A little.

“Hmm.  Well, it shouldn’t really.  What about-” He pushed my leg gently while holding my knee and a tweak of pain yanked at my muscles.  ”Ow!” I said in surprise.

“Not good,” he said. “That shouldn’t hurt.  Sorry about that.”

“It’s okay,” I said because it wasn’t that big of a deal.  ”What does it mean?”

“I’m worried that you may be damaging the cartilage in your knee.  The muscles aren’t strong enough.  We need to work on exercises.”

He suggested a few basic strength-building exercises.  And we chose a new medicine to try for the arthritis.  And I walked away, again holding this story that I need to weave into my days.  Because it doesn’t seem like that big of a deal.  But it could be a huge deal.  Strange how my stories change.  And I get used to an idea.  And when new information surfaces, when something like this happens, my whole world rocks on its foundation for awhile.

Because this time, I was okay with dealing with mess in my ankles and feet.  I’m even wearing the braces more.  I accept the decline from my shins down.  Same with my wrists and hands.  They are are fragile and fussy and I know how to care for them (mostly).

But not above that.  Not knees and elbows.  Not shoulders and hips.  Though I should know better.  Really.  Still, not fun to think about.

I’m no different really than a week ago (or am I?).  Just awareness and caution.  That’s the tricky part about degenerative conditions, though, because it can change that quickly.  And it can be a really big deal.

Hopefully that’s the most I need to worry for awhile.  :)

Because exercise is a lovely idea.  But if the nerves are fraying, exercise won’t accomplish much.  I have a story for that.  Tomorrow.  :)

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Episode 35 Show Notes

I reflect on CMT Awareness month and how I have more questions than ever about an ever-changing disorder.

I saw the Dolphin Tale movie with Anika and I share thoughts abut our reactions.

Then, the iPhone 4S for the disability community.  How well can it correct my many typos?  How useful is Siri, really?  And can a smart-phone make my life better, easier, healthier, and more connected?

Is that too much to ask?

Enjoy!

Oh, and an awesome poem by Cristal!  Mutants of the world, unite

My Dolphin Tale Post

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Looks like I might make this goal happen of writing every day this month.  I missed one for traveling, but still.  Pretty good!

As with all journeys, I am surprised by my discoveries along the way.  I assumed I could share my stories and answer questions.  And that’s fun.  But I’ve also found new friends and new questions.  Like yesterday, with this article.

Before, I liked reading “Does not affect life expectancy” on most CMT descriptions, like on the CMTA website (and I totally appreciate the CMTA, I’m not criticizing them) and on the National Institute of Neurological Disorders and Strokes (they use the rare instances clause).

Then I found this letter and it broke my heart.

Basically, the information is changing.  There are more and more stories about people with CMT having issues with their phrenic nerve (which controls the diaphragm) deteriorating, and then breathing becomes impaired.  Not dramatic, but less functioning (as with hands and feet).  So, especially at night, lying down, the body might not be circulating enough oxygen.  Clearing out toxins.  Sleeping well.

Symptoms of this include fatigue and morning headaches that fade and may feel like a hangover.

Yikes!

Check and check for me.  Now, I only get that way when I’ve been busy, when I work hard through the day.  I’ll wake up feeling worse than the night before.  Anyone who has read my posts for awhile has seen these Crash and Fatigue blog posts.

And I like to think that ‘very rare’ is definitely not me.  I can walk without braces.  I get the, “You look great!” comments.

And I’m sure that I’m breathing just fine (almost sure )  Just the day to day curiosity that gets me thinking.  When I was diagnosed, my scoliosis was not considered CMT-related.  Then they updated the data and scoliosis became part of the CMT fact-sheets.  Some say that scoliosis is rare and others say it’s common.  So am I ‘very rare’?  Should I worry about the ‘very rare’ symptoms?

I suppose where I am going with all my speculating is that it is hard to manage a disease that remains so mysterious.  And it’s hard to say, “Oh I expect to feel tired” vs. “Maybe I should investigate with specialists.”

I did call and make a neurology appointment.  But the appointment isn’t about breathing.  I need  a winter management plan.  The past few winters have really tested me and I’d like to be better prepared.

Oh, the other shift that I see in information is how CMT patients handle cold temperatures (and heat-stress).  My neurologist was really concerned about my cold feet last winter.  I use CosySole slippers at home, which help a lot!  But I can’t wear them everywhere.  So now my circulation is affected along with my nerves.  Huh?  Then I saw this article about strange Cold Stress Responses in People with CMT.

How do I hold all of these stories?

Most of the time, I ignore them.  It’s only because of this month that I starting paying attention to new articles, research, and developments.  I manage what I have on my plate today and figure I’ll get around to the rest when needed.  But what if I am missing a significant problem, as with the girl in respiratory distress?  What if I am causing long-term harm by being strong and tough and brave?

I don’t know.  I’ve learned enough from the internet that I don’t get alarmist.  I don’t panic.  But I do wonder . . .

curiouser and curiouser

there’s a theme- I live down the rabbit hole, where the world is topsy turvy and I am too big, or too small, or never quite fitting right

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Energy is in short supply.  We’re on weeks now of snow or rain or general clouds, and I learned I am a sun-girl.  The sun powers me up.  Or maybe it’s getting the kids outside that powers me up .  Regardless, this day-after-day tired got me thinking about my energy levels again.

I am weak.  Physically.  This is a fact.  All measurements show me off the charts in a bad way, under the bottom lines for my age.  So everyday tasks require greater effort, a push against strong waves that should only be mild currents.  That wears me out, I know.  But more than that is the tidal shifts in my energy levels, the ebbs and swells that fall and rise over an hour, a day, or over weeks.  I’m in a weeks-long slump right now.  Each morning I wake up tired.  I slog through most of the day with occasional bursts of energy.  I’m trying to figure out what influences these mercurial tides, but, beyond the weather, it’s hard to chart.

It’s hard to feel so out of control.  I try.  I rest.  I read.  I watch movies.  I’m even moderating mental/creative energy in the hopes that might relieve the physical exhaustion.  I force myself (and, yes, it needs enforcing) to watch tv or read without multi-tasking.  I don’t know.  Ian is little, but he’s getting better.  And March has a lot of work-stuff like report cards.  I have plenty of reasons when I look back over my activities.

But, still  . . . just tired.  And a big challenge is that I can’t make real plans when I feel like this.  I don’t want play-dates for my kids.  I don’t want to meet anyone for coffee.  I don’t want to record podcasts or connect with communities.  Because I never know how I’m going to feel from one hour to the next.  I may make plans while I’m feeling good that feel absurd within hours or minutes.  So I hunker down and wait for the sun .

And yet the ideas buzz inside my head.  I have photos to post, emails to answer, podcasts to record, stories to write, a novel to edit, 18 leprechauns to prep, a leprechaun book to write for the kids tomorrow, a post titled Does my Child have a Learning Disability?, a reflection to write about teaching this year to share with my school’s Governance Council on Friday, and a house to clean and children to care for and . . .

ok, tired is okay .  Sort of.  Where is that sun?

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Once upon a time, before the pain and fatigue, I loved winter.  I loved the frosty mornings.  I loved the indoor-ness of winter.  No crazy river-hikes or beach volleyball.  No dirt biking or mountain climbing.  Just books and friends and yummy food.

The past years changed all that.  Now I trudge through winter.  Counting the days to spring.  But, really, where does that leave me?  Slogging through half of the year.

So I turned the prism, shone the light in another direction.  What would I see?

1. hot chocolate with mini-marshmallows
2. sunshine on sparkling snow
3. fresh baked cookies
4. movie marathons and video-game binges (bonus: they do not waste a “beautiful day”)
5. snuggling under blankets
6. rain-washed forests
7. cozy pajamas, cozy socks, cosysoles
8. frost-dusted branches and fields
9. firesides
10. no one suggesting hikes or bike rides
11. long evenings in cozy houses with friends and red wine
12. snowflakes tumbling from a silent sky
13. winter sunshine (really, does it get more delicious than the petal-soft winter sun?)
14. falling asleep to rain patter
15. peppermint mochas
16. snow-laden trees
17. fun and funky hats
18. green hills and mountains (in summer here, the grass turns golden-brown)
19. dramatic humbling storms (without injuries, damages, or power outages )
20. travel in the off season (deserted beaches, short lines, easy parking!)
21. scent of rain-soaked air
22. frozen dewdrops
23. kids laughing as they sled down snowy slopes
24. not needing to wear (or buy!) sandals
25. clouds.  Piles of fluffy clouds or dark clouds or clouds shaped like dragons
26. that first sip of hot sweet coffee in the morning
27. the holidays.  Love those winter holidays all about hanging out indoors and eating yummy foods
28. winter birds.  Around here, quick little juncos
29. wonderful escapist books (best by a fireside, snuggled under cozy blankets, with a peppermint mocha
30. And then in the last days of winter, those brave-green shoots pushing out of the cold-dark dirt.  And this earth that seems barren is not dead at all.  It is resting.  It is quietly gathering energy as it welcomed last summer’s song of blossoms and leaves, took it all unquestioning, and transformed it into a thousand possible new songs, new energy for new singing, a thousand possible bloomings.  And this lost time, this chill-winter-time, is a sleeping of seasons.  The downtime is beautiful too.  The only ever-lasting thing is change.

Yes, I still adore winter

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Yesterday was not a good day for smart-me.  I like to share my good moments, but I must share the stumbles, too, to keep things authentic.  So we have lovely weather, a breath of spring in January, and I was sitting outside with Ian playing on his bike.  The sun was glorious.  And I thought, that cabin of the kids is in a bad spot.  Oh, look, no weeds in winter, maybe I can shove it closer to the swing set.

It’s taller than me, plastic, but heavy.  My test shove worked.  I kept shoving and tugging it to a better spot.  Ha, look at me, strong and capable!

Then we walked towards the house and the path was covered by broken roses.  The roses are wild, having been neglected since I was pregant with Ian.  The November snow cracked and snapped them.  It’s only a few feet of path, I thought, the kids need to ride their bikes.  Easy to clear.  I had a surge of energy.  I like to take advantage of those energy-surges.

I get the big foot long clippers that turn out to be terrible-dull.  I have to twist and yank many of the branches loose.  And my little task turns into a huge pile of thorny, brittle stalks.  And the weather is making the roses bud again- tiny leaves and new growth.  No, no, no, not until I tame you .

Anyway, I pile it into the Yard-Waste-Bin, even the giant chunk of thorny wood that was an entire stalk dead at the roots.  Drag that bin back into place beside the house.

And it felt good.  Powerful.  Who has health challenges now?  Ha, not me!  I can do anything!

I’ll even rest a couple of hours to recover.  Mighty me

Ha.  Ouch.  Paying today.  Muscles in my arms are angry-sore.  Feet siren-loud-ache. And everywhere is a crushing-tired.  Standing is heavy work.  Dumb, dumb, dumb.

Again, it isn’t what I can do with CMT.  It’s what I should do.

Always less than I want to do.  A battle of will and ability,  Limitations I must create and respect before I bad things happen.

Ian found me.  Another day

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Today was another doctor appointment.  Another round of antibiotics for a cold that has settled into me for a longer stay.  And it’s been over a month since my last bout of antibiotics, so I was glad for that.  But we also talked pain medication and how winter affects me and I left the doctor’s office holding so many questions.  What do I do?

And I tumbled around answers all afternoon and evening.  I’m not very fun these days.  I’m irritable, tired, and fussy.  I’m fine, really, but I’m fraying at the seams.  I find myself losing words, obvious words like when that movie star’s name is right on the tip of your tongue, but this time the words are homework, or jacket, or laundry. I’m sleepy all day and then awake at night.  I try to limit projects.  I actually walked out of a craft store with nothing, nothing new to make.  That was huge.  I have no time.  And I know life is very demanding right now.  Ian is two.  Active, endless-energy until we melt down in wailing fits two.  Lovely two .  I knew this would be hard.

And I remember the words from five years ago about conserving energy and making long term decisions that will keep me healthier longer.

I wish for answers.  Someone to say, this medicine, this treatment, this course of action will make all the difference.

These degenerative conditions are so tricky.  Especially when we have bills to pay.  Meals to cook.  Houses to clean.  Life doesn’t stop for us.

And tired is finding me fast .  So this thinking was the inspiration for the quick poem.  About how we stand on this path and we look for advice from our doctors, our friends, our family.  But really we are standing on this path alone and we have to make the best decisions for ourselves.  That takes a heck-of-a-lot of courage.  And strength.

I’m so glad that we have each other.  We really are creating a garden online with our stories.  Reaching out and sharing what matters.  We are amazing

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Instead of chasing, I should have found an underwater picture .

My zero-inbox plan lasted one day.  I have 97 emails to go through from the past four days- yikes!  Clutter in every corner of the house.  We are winning the Christmas tree marathon.  Ours is standing proud, blinking colored lights in the window .  A lingering cold pesters me with constant headaches.  All in all, back to the routines .  Ian’s bedtime routine is gone, speaking of routines.  So it’s harder than ever to get to the computer to write.  But I need this creative space, even for the rough edges, especially the rough edges, because I am reminded of balance here.

On the positive side of life, I am editing Dirt, Lord of All Things Dark and Mysterious to publish indie-style.  Kindle and Pubit for Nook right now are my plans.  A friend is going through it for errors and my Mom agreed to help (yay Mom) so that’s all happening backstage.  Kids at school are practicing Peter Pan.  Another crazy escapade, but they are so excited and happy so it’s worth the effort .  I’m considering publishing the script indie-style for schools everywhere because it really is a fun production.

I managed to take and edit Christmas Dress photos, so those are at the end of the post.

Busy as ever.  But I must keep finding my way here.  My rock.  Last winter inspired me to start this blog and those stormy skies are overhead again.  Cold, cold, cold.  Fussy.  Does fatigue make us feel colder?  I wonder . . .

Anyway, kiddos are getting restless in the bath.  Five minutes.  Over

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