Tag Archives: fatigue

An Obvious Sign.

25 Jun

Obvious sign of a day that needs to come to a close… Not being able to find my reading glasses.
Yes, I was wearing them.  It took me 10 minutes of squinty searching and they weren’t in the freezer or the spice cabinet.  I found another pair and popped them on.
I was, then, wearing two pairs of reading glasses on my face, and another on the top of my head, with one pair hooked on my collar, while I searched for any single pair of reading glasses so I could check my email on my ipod and recline with a cup of tea.

At least it was only four pairs time.

It’s progress.

(four weeks into summer break so far)

My boy is the sweetest, kindest, and most patient person I know. When I apologize because I’m too tired to take us on any big adventures on the average day, or when the pain gets bad enough to warrant a day of Spongebob and Cheerios, heatpacks and drawing, he gently tells me that my apology isn’t appropriate because I didn’t choose the pain or the fatigue and he tells me I’m his “sweetest, cutest, nicest Mama”. I tell him that I’m also the luckiest girl in the world because I get to know him and be his Mama.

I don’t want him to ever feel like his role is, primarily, soother. He is my child and I am his Mama. We are best friends and on our really difficult days, we are kindred spirits who just don’t fit in easily but always fit in with each other. (Though these days he’s getting awfully close to the border of where I am really embarrassing in my goofiness, when we are out in public. I get reminders before we get out of the car.) At the same time, there is so much negativity out there about how hard it is to be the parent of an autistic kid and I make sure he knows that the difficult parts of parenting and his autism is other people and not him and that he is a joy. I also remind him that we are all works in progress and he has been saying that, lately, whenever either one of us has a particularly spazzy or goofy moment.

I am the luckiest girl in the universe.
I am the luckiest Mama in the universe.
I am fortunate beyond measure to know this remarkable kid.

Here he is, jumping for joy:
So happy!

And right now I need some sleep.
There will be a post to catch up on the events that I have skipped over… Eventually.


Sippy cups and speed humps.

17 Jan


The view from here…. I feel this nearly insatiable need to update that is stifled by an equally huge drive to rest these bones and ping around in my own squash.


Once I finally have the energy and ability to share and get it out from between these two ears I start hitting speed bumps and backing things up, back to a calm place where I can hit pause and know I’ll be coming back to that place, that thought that needed sharing… Well, I can’t back up anymore because I know I will be blocked from getting back to what i needed and wanted to do. So I shove forward as much as I can.  Each day I hit a wall too soon in my day, there are tears, and the anger deep in my bones threatens to float up from the steel piles driven deep into the muck, where I tether it daily, knowing I need to hone existing skills and forge some new ones before I can let them float off on the tide instead of using my reserves on big gulps of air to sink them once again, tethering them deeper each time.


Ok. That picture has nearly nothing to do with anything.


I mean, two folkloric and beloved characters from childhood… Sunk in a giant human-head sized hermetic seal glass jar… ok, ok. I know…

Anyway, my wrists and hands are hollering. This typing one handed thing is just miserable.  I miss the comfort of my homing keys and the soft clackety-clack.

More soon…


Giving Thanks: Alex’s Feast!

27 Nov

As far as Thanksgiving specifics go, I am thankful for so very much, but especially this drawing that Alex brought home from school.

The kids had to draw their ideal Thanksgiving Feast.   I’m sure most kids would put the traditional “Turkey Day” fare, but this is Alex’s design for the menu of his perfect Thanksgiving.

Why am I so grateful for this particular drawing?  It took so much pressure, and potential criticism, off my shoulders.   Alex and I cannot eat the Publix prepped bird and sides that my mom has gotten for the past few years.  I also don’t trust most of her cooking as she tends to forget that most things like “broth” (for example) are not singular ingredients and if we ignore the labels on packaged foods we can wind up in deep doo-doo (as I found out last Christmas and wound up missing most of Christmas Day because I was too sick to even move).

So with only the two of us requiring special foods, and Alex not being a fan of any turkey except low-sodium Public deli turkey breast (and then he only seems to like it if it is given to him over the counter as a “taste”), I let out a big sigh of relief.  This year, with my current level of fatigue, I did not have to brine and baste a turkey breast in the oven.  I did not have to make stuffing and sweet potato casserole from scratch.  Sure, I would have loved some roasted turkey that I could safely eat, but this fatigued state I’m in has also adjusted my appetite to next to nothing (I’m chasing my low blood sugars and adjusting my pump pretty constantly).

I prepped and chopped all of Alex’s menu items, and packed them bento lunchbox style and brought them to my Mom’s house.

He ate raw carrots (sliced into long planks), cantaloupe, bread (the express bread recipe that came with our bread machine tastes kind of like Carrabba’s bread when warm), herb dipping oil for the bread, american cheese, fritos (I forgot his garlic mill at home, but he was cool with it as he had specified that it was “optional”), deli turkey, and ice cream (though cookies and cream was specified, we couldn’t find any so he had Hagen Daas Chocolate Ice Cream.  My dad even picked up a pint of it, so we had extra ice cream.  You should have seen how wide Alex’s eyes got when he saw a freezer shelf with only ice cream that was safe for us to eat.  He promised he’d let me have a taste. Such a sweet kid.

I also took a cucumber and used the peeler with the little cross blades.  I ran it along the length of the cuke and it made long cucumber “spaghetti”…. I also made a tiny little batch of very light pumpkin fettucine and a few loaves of my crusty cheese bread (my mom requested it).   Alex ate a nibble of the cucumber and a nibble of the fettucine.  I was so proud of him for at least trying them.  The fettucine didn’t seem too pumpkiny in flavor.  I think the pumpkin, without the benefit of nutmeg or cinnamon, really brought out the eggy-ness of the pasta, even though I really just substituted a couple of tablespoons of pureed pumpkin (I’m still working through the case I bought from Amazon.com last year!) for one of the eggs and used a bit more semolina.  The color was fantastic, but he wasn’t thrilled with it.

It was nice to see my parents and Uncle Richard, and to meet my parent’s friends from their community.  Alex ran through his iPad battery fairly quickly, and then he occupied himself by playing with Gizmo (my mom’s “baby”  Brussels Griffon rescue… He’s around 3 and such a sweet pup)…

I’m thankful that the day was fairly uneventful. I do wish that I had my appetite and the energy to cook a feast again this year.  Maybe next year….

Now for the winter holiday season…

I’m going to take a nap first… Hope your Thanksgiving was mellow, happy, and low on conflict!  :-)




Dark week

14 Oct

This has been a strange week. I have not been awake very much. I sleep through day and into night. Tedious dreams blend with what little tedious reality I meet. This must be a flare of RA. The pain and stiffness have reappeared. The stiffness isn’t as sudden but in my hour or two of awake I scramble to meet demands and wants and I try to fit being a good mama, daughter, wife, niece, friend just under the security grate as it is fastened and locked for the night. I hope this is just a temporary slow down or some sort of healing crisis. There is too much to do and I still have not adjusted to my body’s newest level of stamina. I’m stubborn. I know when my hands and feet and spine start hollering that I’ve done the damage and I’ll keep pushing until my joints lock up and all I can manage is tipping myself over onto my bed. Hoping there is a shift this week and rest and activity will fall into a smarter balance and pain will be more manageable so I can work on the stiffness. I miss participating in my own life. I just want to hang out with my kid and make stuff. Hoping something falls into place so everything else follows suit.

No really! I’m working on something!

7 Oct

Gahhhhh! It’s after midnight here…

I have been bowled over by this fever and I’m so tired.  Not just physically. I’m just wholly drained.  I should have every bit of energy heading toward Alex and making this transition to health smooth and enjoyable, because hey, we have to live this lifestyle or continue to pay the consequences of G6PD Deficiency.  Some energy has been diverted to try to decipher the tornadic tantrums of grownups who still haven’t learned to communicate appropriately.


It’s late.  More later today.



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