Saturday, September 24, 2016

Week 8 - Frustration is the Word of the Week

We've had a resurgence of summer-like temperatures this week, which did not please Amber in the least. She's anxiously awaiting autumn temperatures, especially since it is now officially autumn. We decorated the house for the new season last weekend in the hope of helping it feel more like Amber's favorite time of year. She's still rather upset though and keeps bringing up fond memories of past Septembers and Octobers when the weather was more cooperative.

Amber had a couple of fairly productive school days this week along with her full day of co-op classes. We had somewhere other than home to be each day, and that takes a toll on us. Next week is much of the same; actually it's more hectic. This past week has made it clear we're going to need to reevaluate Amber's activities, time at the hospital, and social events. We can't keep up this schedule much longer. On the surface each item doesn't sound like much. However when, for example, a once a month activity requires juggling our schedule repeatedly just to happen or it takes the only free day we had in weeks, I'm not sure it's worth the effort. It's nearly impossible to add anything unless it's an emergency and then I feel guilty for canceling items because of the emergency. So, I'm always behind on my own medical visits (diabetes does not manage itself).

I finally set up Fred's previous Alienware for Amber. She's ever so grateful.
Unfortunately, I'm going to need to start regular appointments with pain management for a problem with my spine, so we will need to make time for that out of Amber's schedule. I imagine the shots will require more time than a quick in and out too. I'm just hoping I don't react to these the same way I have to shots in my other joints. 

Amber spent today in a full dysautonomia / EDS crash where she basically couldn't function. She looked pale and sickly at co-op yesterday, which her friends all noted and even mentioned to me when Amber was not near. They understand her condition, and knew she was pushing through a crash that had already begun Wednesday evening.  But it was sweet of them to watch out for her.

OT during a dysautonomia crash.

I think this crash is a result of a busy schedule and getting over a cold-type thing. On top of all the normal appointments and activities, Amber has been attending her final confirmation classes. Having the classes on a Sunday evening after being at church in the morning wasn't ideal. Each of the ninth grade classes lasted two hours, instead of the usual one hour. Amber can't focus that long any evening, much less on a Sunday. She pushed too hard and then ended up in a downward spiral of insomnia and exhaustion. She hasn't slept well all week since being over tired on Sunday. 

I know this post probably has a frustrated tone, and that's exactly how I feel this week. Low on patience and high on stress. Thankfully, my co-op classes went fairly smoothly, because I didn't have my usual ability to deal with annoyances (and honestly on a good day my tolerance is well below average). At least our kitties have been sweet, healthy, and playful without any significant incidents.

Loading up Great Courses video on the Mayans.
So what did we do all week? 
Physical therapy, occupational therapy, cardio exercise, flute practice, flute lesson, co-op classes and homework (seriously, her only homework is from my classes - I need to stop giving it), clothes shopping (because when the weather cools down the child will have nearly nothing to wear but her endurance allows for one store at a time), grocery shopping (because we had only non-perishables), resting (lots of this to put off the crash as long as possible), studying and oral quizzing for her confirmation examination in 16 days, completing a full lesson in IEW writing, grammar (yes, we finally got to it), math, botany, history and played with our kitties. 

So far this weekend, we've done nothing. Apparently, I was exhausted and ended up sick. Hopefully, a day of rest has helped and we will all be back to our normal selves soon.




1 comment:

  1. You all have so much on your plate. I totally understand your frustration. It makes it extra hard when the schedule is so tight with non fun things (doctor appointments and the like). It felt like we gave up everything fun for months at a time when the appointments were intense. I hope you can find balance and rest. Remember, learning is always happening. You really do not need to do as much school as you probably think you need to do with Amber. Praying!
    Blessings, Dawn

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