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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Apple Launches interactive Textbooks and jailbreaking: http://pinterest.com/rightclicktech/right-click-news-bytes-jan-week4/

*the link will stay active for 8 weeks after our air-date. Enjoy!

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This week was fun. A little quiet. I didn’t get out the fancy camera so these are all iPhone 4S photos. At this time, just seeing the flow of our days, one into the other, is plenty. More than enough. And we end this week with rain! Time for the rainbow umbrella, hurrah

P.S. I just read back a few posts and I didn’t include Reno in last week’s collection. So the top two of Ian are the same day. Sheesh, hard to keep track of it all. So a Reno image, to keep it fair

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I went to lunch with my mom. Ian fell asleep on my lap in the coffee-shop just as sweet-as-you-please. Which gave him lots of energy for shopping later

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Even quiet days are not so quiet.

We started with tents. I brought my camera in from the cold garage and the lense fogged in our warm house. The dreamy quality works for me. I love the interaction between Anika and Ian. She is such a sweet sister.






Then we made layered popsicles. Took serious patience to let each color freeze.

So we did Spin Art.

And baked cookies. Sort of. I love these simple cookies. Even better when they make it into the oven

I know, we shouldn’t eat raw dough, but we have to be a little wild sometimes. And they didn’t have much.

Then it was a rousing game of Star Wars Trouble.

And showing off the drawings that sister did earlier in the day.

Then, those popsicles. They must be done by now! In truth, Ian had to refereeze his twice because they kept ‘testing’ readiness and pulling the stick out before it set. But the wait paid off with every lick.

A busy day. Our quiet day

Wishing you a lovely day

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This weekend we escaped for an overnight get-away, visiting cousins who live by this lake.  The lake was a challenge to photograph because the sun was so-very bright.  A cold wind whipped up off the water, but you couldn’t tell by the flashing blue.  Not a glimspe of snow in any direction, which is unusual for this time of year.  The ski resorts are not pleased.

But the kids were plenty pleased on the playground.  Ian was glad to be done with the long, long car ride (really only an hour).  We’re inspired to visit more often.  My cousins better watch out

Ian’s new delight is cars.  He loves his cars.  He picks them based on a very important feature.

Orange.  They must have orange.  The white truck came in the same set.  I think he gave it to his cousin

We walked out on the dock, bundled against the icy wind which felt odd next to the sun drenched sky and sparkling water.  We didn’t stay long because the wind drove us away.  And the kids wanted toys.  Adventures to be found at our cousin’s house.  The weekend was off to a bright start.

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We may be traveling tomorrow (hopefully) to visit cousins in Tahoe. So . . .

This week’s photos. This week was tough because I was sick. Stay at home, camera sounds like work, tired, sick. Then remembering at bathtime…

Which was cute, too.

The next night I remembered after dark, again. Once I lose daylight, photos get really tricky. I like natural light. But this running, giggling craziness was good to capture, too. Ian was very amused by a box on the head. As well he should be. He is amusing

Then today, cousins sent us stickers.

I have a couple from the other days, but they are unremarkable on their own. It shows me how days slip past, one after another, often quiet in their passing. Which is just fine. I appreciate quiet. Drama is fine every now and again, but quiet . . . Quiet is good too.

I hope your week was lovely

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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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I enjoy the Photo365 project because it inspires me to pay attention to those little moments again. These bath pictures wouldn’t exist if I didn’t need an image for the calendar. The past few days have been especially challenging because I am sick.

Ian is really needing Mama I have to sign off for now.

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Sunday

Monday
Tuesday

Wednesday

Thursday

Friday

Saturday

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