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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The other day as we were tucking into bed, my girl said,

“You know, Mom, I understand kids with challenges. I understand how they are. I get confused sometimes. And I know I shouldn’t be confused. I know it’s not that hard. But I can’t help it.”

And my heart cracked. She has Auditory Processing Disorder and she works very hard decoding words. Reading is an arduous journey. My mind spun for an appropriate answer as she looked my way and smiled.

“But that’s okay,” she said. “I’m okay with that. We’re all different. We all think different. And other kids have a hard time with other stuff. And we all have our gifts, too. Everyone has gifts. We just enjoy what we are.”

My heart cracked again for a very different reason. I am so proud of her. So excited to see the world through her eyes. Where opportunity means more than limitations. Sweep away the negativity. Sweep away the shame and disappointment. Celebrate today. Celebrate now.

Here is a classic gift from Anika. She made this for my classroom. Later that night, she was reading and saw the word ‘new’. We sounded it out together. ‘Wait,’ she said. ‘Is that really how you spell it? Because then I did it wrong.”

Not wrong. Just right. Happy Now Year

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So happy to be home. I love traveling, love the adventures, but I also love returning home. I know this place. I don’t bump into corners (as often). I get my routines and quiet(er) times. I am safe here.

And, at the same time, I just want to get away. I’m reminded of all my challenges here. Piles to sort, laundry to fold, crafty supplies to organize. It’s so easy to feel inadequate. Especially because the fun takes energy and I come home needing to recharge.

We used to get help around the house, when my husband was employed. We are going on month ten of unemployment. And he does a lot around here with the big stuff- vacuuming and scrubbing.

I just feel like I should be able to help more, get more done, faster.

The frustrations are not unique to me, or even unique to my situation. Yes, I have a few aggravating factors. And they could overshadow these days together. I could go into a frenzy of cleaning and snipping at my family to pick up more, now, faster.

Or I could breathe deep. Give small doses of time and energy. Take breaks. My knee is still sensitive. It will be fine. I’m careful anyway.

Relax. Enjoy vacation instead of using vacation for housework. Trust the stuff in corners will find homes eventually. Laugh. Give myself room to be me, not an idealized version of me.

That would be a huge gift. To let less be enough.

I won’t get everything done and that has to be okay. Because it won’t get done whether I’m mad or gentle. I don’t get to choose how much energy I will have in the morning, or how I will feel tomorrow. I do get to choose how I treat myself along the way. Tomorrow, I will choose kindness. Sounds sweet

After all, happy moms make for happy families.

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Hopefully it’s now big deal, but in all of these colorful sunshine images, I had to say that I almost fell today. My knee is still tweaked. The sand is tricky enough, all soft and uneven. Then I stepped on driftwood that twisted my foot forward so I stressed my ankle and yanked my knee. I didn’t fall, but I may have been better off if I had gone down because maybe the tendons wouldn’t
have over-stretched. I am doing my best with rest and hopefully it will be ship-shape in a couple of days. But, sheesh, I was sure enjoying my day at the beach before that.
Like I said, hopefully it’s nothing more than a reminder. Step careful

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I get this question a lot, especially around the holidays.  I’ve made seventeen fairies with my students (like the photograph) and ten fairy kits and eight sewn ornaments and now I’m working on eight more angels and three custom fairies.  How is it possible?

• It isn’t.  Not every day.  I have break-downs and melt-downs and it’s a constant balancing act.  I hit the wall and get frustrated, then sort myself out and try with a new plan.
• I am lucky.  This may sound strange, since this is a list of compensation strategies.  But my nerve conduction test showed that I have good nerves alongside the damaged nerves.  So even though I am weak and prone to injury, I still have my fine motor skills (mostly, the little faces are getting more frustrating)
• I am living short-term.  I cannot do this every year.  Probably not even next year.  I don’t know what I will change, but I know I must change.  This pace is not sustainable.
• Lots of coffee.
• Braces for both hands.  I switch back and forth between my right and left hand braces (feels too strange to use both at once ).  They are carpal-tunnel braces available at any drugstore.  My custom brace broke (too much activity, I suppose
• I get defiant.  Oh, fingers going numb, well then, I’ll make four more crafts, just to show who is in charge here.  I do not recommend this strategy.  I know who is charge long-term, and it isn’t me
• I take more Aleve.
• I have help.  At school, my teacher-friends helped children sew the hats.  Other friends and family help entertain my kids.  They all support me 100% (though many say that I shouldn’t do so much).
• I live with the consequences.  I hold the pain and numbness with the understanding that I earned it.
• I let other things go.  We’re eating simple, and the piles are piling up.  But I’ll get to them.  One day
• I switch between activities.  A lot.  I will sew a little, then type, then play with the kids, then sew a little more . . . you get the idea.  My hand therapist said that the repetitive motion is the biggest danger.  So skipping from activity to activity is actually helping strengthen different muscle groups, right?  Or is it just causing more fatigue in different areas?
• I have an end-date.  This week, it’s Friday.  The Fairy Shop will close its doors.  School will have Winter Break.  And I will turn my attention to my family again.  So I hope those days of strict no-crafting will allow for healing.
• I love what I do.  Really, this is what makes it all possible.  I love each and every one of these little treasures.  And I feel so fortunate that I get to bring this magic into the world.  That magic is bigger than the pain and numbness and fatigue.  That’s what drives me, inspires me, motivates me.  I appreciate the fact that I can make them now, so I will.

Off to make more magic

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Why is it that when I hurt, I get angry?  Snarling at the world, dark skies angry.  I think because it triggers all that fear about future limitations, as well as triggering all the frustration with my current limitations.  I bang at the walls that seem to be closing in on me.

I can’t type much tonight.  I have to rest my hand.  It is really really tough for me to rest my hands.  I do not like being still on a regular day, but today I was going to prep angels to sew with Firefly (forget that plan).  I hope to make Christmas Fairies with my Dragonfly class later in the week.  I have ornaments to make.  Craft kits to assemble.  I do not have room for pain.

Pain makes it’s own room.  Settle in for awhile.  Last time this lasted a day or two.  I was good about the resting.  This time hurts more.  It keeps tweaking at me.  Notice, notice, notice.

I notice.

I’m angry.

Deep breaths.

We had a great Saint Mikulas celebration tonight.  He knocked on the windows and left treats for the kids.  A candle for me.

Off to rest these hands.

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My friends can guess this story already by looking at the stairway. The picture says a thousand words

Now, the moment began, not at the top to these stairs, but much earlier in the day. Actually, last night. Ian has an ear infection with a fever so he didn’t sleep well and I gave him medicine at 1:30am. Then up at 6:30am to teach. Rushing home as soon as I could to give him comforting. And I was the empty shell on the shore, tired beyond tired.

This is Nutcracker weekend, so I got Anika dinner and dressed in her mouse costume. We live across the street and parking is rough with the show so I walked the half-block, then across the parking lot. And then. Then the stairs. Oh, and Ian couldn’t stand me leaving, so he tagged along. Not feeling well but determined not to be left behind. The dressing rooms were down these stairs, down the hall, down another few stairs . . .

I just couldn’t muster the energy. We went into the theater lobby with the bustle of pre-show organizing. We checked in with her dance teacher. “They go around and down to the dressing rooms,” she said, already turning her attention.

I took a quick breath. Be brave. Be strong. Because in this moment, it’s easiest to say thank you. And walk the stairs. And deal with the fallout. Instead of calling attention to myself and my story. She barely knows me. “Actually,” I said. “Is there anyone that could walk her down? A group of mice she can join?”

She glanced at me, that glance that feels like it measures me against my words. Wonders how I could be so lazy (my interpretation, I guess).

I stammered, because I do that when I need clear words the most. “I just, it’s hard for me-”

“We don’t have any runners and-”. She still had that quizzical gaze, which I felt as “really?”

“Nevermind,” I said. “I bet one of her friends will be here soon.”

And that was a solution. Anika walked down with a friend. Luckily she’s very independent. And she knows her mom.

Ian and I trudged on home. I tried to rest. I walked down the stairs to pick Anika up, after all.

But the hard place was the moment of speaking needs vs. staying quiet. There is no winning answer. I speak up and I feel guilty. Or I stay quiet and I ache. Especially when challenges are not obvious, speaking up makes waves in what seems to be smooth water. I like to be smooth water. But each chance that I have to make waves is a chance to educate, and to take care of myself. And that’s important modeling for my kids, too. To see that we can be true to ourselves and help each other out along the way.

We all have our stairways. But maybe we don’t have to climb ever single stair alone. Maybe we can skip a few .

PS My feet and legs are still mad mad mad at me … Even with my brave intentions . Oh well, I tried

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I am usually a holiday girl. I bought a tree with my allowance when I was a kid to keep in my room. Five years ago, I hung two strings of lights along the gutters all by myself. Climbing that ladder twenty times was no small feat. I even love wrapping presents. I used to wrap them for my entire family. I decorated and baked and crafted and bought Christmas music.

This year is different. This year, I dug in my heels even against Thanksgiving. This year, the holidays don’t sound sparkly and fun. They sound like work.

It’s the same thing that happened to traveling earlier. I’m sure it’s not just me. I mean, the rest of the year is challenging enough. We’re managing our families, finances, symptoms, lives. And now, just when that was overwhelming enough, have more! Gifts, decorations, events. Evening activities. Traveling. Lots and lots of expectations.

And I see, all over again, how it’s easier to say ‘yes’ and deal the with consequences, instead of saying ‘no’ and explaining why. Especially with invisible challenges, it’s so hard to set healthy limits. Especially when the limits change day to day.

So my goal this week is to get another podcast recorded. I miss our community. I’m trying to revive my frozen holiday spirit. I love this time of year. This apathy isn’t me at all.

I am searching for solutions. I have a few ideas. I am closing orders of custom fairies on December 3. Hard to say no, but I want my family time, too. I will also not craft a thousand gifts. This one is hard for me. But I was good- I bought a few things on Etsy that I could have made myself. Little steps . And … I don’t know yet. I’m trying to think of more.

I’ll let you know as I discover them. I need to take care of myself, too. Oh, I’m trying to buy local and crafty (etsy) so I won’t be walking through big stores.

Small choices that will hopefully add up to magic

I miss the magic

After all, how could I possibly disappoint her? She’s all excited for her Nutcracker show this week. Photos of that adventure tomorrow.

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iMainGoXP By Portable Sound Laboratories
Ultra-Portable iPad stereo speaker case
by Giovanni

The Good:
It’s a solid case with 4 speakers and internal rechargeable battery that works with with iPad and iPad2. Great design in this price range make the iMainGoXP a great way to enjoy watching movies on your iPad at home or on the road with the internal 6hr rechargeable battery. The speakers are best suited for movie watching as the stereo surround effects create a nice personal space of cinema enjoyment.

The Bad:
The sound quality is good at lower levels but the midrange tones quickly disappear at higher volumes when listening to music, making this speaker case best suited for movie watching. Slightly hard to open locking tabs make the case hard to open at first but does loosen up with use. The case cover is a fingerprint magnet but only really noticeable up close

The Verdict:
A good value at $119 with solid build quality and good sound, turning your iPad into a personal movie theatre. I wouldn’t recommend this case to an audiophile expecting “big sound to fill a room” as this case is not intended to compete in that market. The case is best used as an accessory to enhance the multimedia experience of your iPad when traveling, in the car, or at home.

Design and features:
At first glance this case reminds me of the portable DVD players made popular a few years back. The size is fairly comparable to a slightly thicker 10” netbook. Once you manage to pull the 2 locking tabs which I found to be very tight even for me, it opens to show the speakers and iPad. I can see how a person with limited hand strength would definitely have a problem opening the case but I did notice the tabs did loosen with use. Inside you will find 4 1½”  speakers and tuned bass ports. The case includes  a snap on cradle for the iPad2 or skip it if you have the original iPad.  One added feature which I didn’t explore were the two headphone jacks for private movie screening or in the car. The included internal rechargeable battery adds just a little bit of weight. A wall charger is included.  The case also includes a sturdy easel type stand lets you prop your iPad on a table at various viewing angles.  Overall design of this product is better than expected in this price range.

Performance:
I can’t stress enough that this speaker system performs really well in this price range. Other iPad speaker cases in this category were lacking key elements like an internal battery and looked more like add on speakers mounted to a lightweight case. It’s very obvious that this speaker case system was intended for movie watching and not so much for music at higher sound levels. The stereo separation is very audible and the tuned bass ports help the small speakers deliver bigger sound, but this effect is not as noticeable when listening to music. Performance is just okay when playing music at higher levels as the mids are absent and the music sounds flat, but not enough to be unacceptable, just a limitation of the size of the speakers. Battery life did come close to 6 hrs at a comfortable listening volume making this a nice travel speaker case for your iPad.

Find the Portable Speakers on Amazon here.

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