So yesterday we talked about the complexities of balancing our spoons. PanKwake’s emotional and physical needs in life with Pathological Demand Avoidance (PDA)/autism and my physical limits with Rheumatoid Arthritis (RA). Today I want to take that one step further and talk about some strategies that are working for us.

Lower Your Expectations

Yesterday was an especially bad day. I hurt most of the time…despite taking handfuls of pills. Was it Folly Farm finally catching up to me? The crappy, cold and rainy weather? Or just one of those things? It is too soon into this RA journey for me to have sussed out patterns like that the way I have with PanKwake’s PDA and meltdowns.

But the point is…knowing that I am going to have THOSE days, coming to accept that as I have PDA/autism, and altering my lifestyle to accommodate it.

How did that look? What did I do on a BAD day?

First of all, I set priorities.

1) Making sure that PanKwake got what she needed from me. At one point, she was playing a game that required reading and she was constantly calling me. So instead of going up and down stairs…something that was especially challenging yesterday…I brought my Kindle to the couch in the family room. That way I only had a short walk to the gaming room each time. It was a good thing too as she called me over half a dozen times.

2) But PanKwake is not the only one I take into consideration. One of my goals is to make certain that Cookie Monster knows he is as important to me as PanKwake. That is not always easy. But one of the reasons that I love this man so much is that he never puts me into a position where I have to choose between them. He puts her needs first too. But once those are seen too, I make sure he knows how much I appreciate him too. In this case, that meant cooking two of his favorite meals…tuna pasta and chicken curry. And *wink, wink*…

3) Not loosing ground. In a house that is half finished, I am coping with the realities of lowering my expectations. As much as I might want to get it all decorated, organized and finished, I am coming to accept that is going to take far more time than I anticipated or wanted. Months. Maybe ever years. But one thing that I try my best not to let happen, even on really bad days, is falling behind. Allowing rooms that are liveable to slip back into chaos and disorder. Of course, I know that is not always possible and those first two outrank this one, but I managed that yesterday.

Maybe caring for an autistic eleven year old, cooking two meals, writing a blog, and doing a load of dishes may not seem like much to some people, but on a day like yesterday I have to learn…that was pretty darn spectacular.

Ask for help

Oh boy is that a hard one for me. Especially when it comes to simple things like opening cans, lifting heavy pots, and carrying the laundry upstairs. Just weeks ago those things were MY job. And in my mind it still is. So having to ask Cookie Monster for assistance with those things is hard for me.

He put me in my place on this one the other day. I was crying on his shoulder because I had had to ask for his help with something. He lifted my chin, looked into my eyes and said…

You have spent all these years teaching PanKwake that was it OK to ask for help. So why isn’t it for you?

Have I ever mentioned how much I love this man? Wisdom is one of those reasons. Heck, I think even PanKwake is beginning to recognize that Mommy needs a bit more help these days.

Pace Yourself.

This is one of the biggest changes I have made. How I structure my day. As usual I begin with my computer work…blogging, social media and emails. But now I add swallowing a handful of pills to that mix. So that by the time I am finished…hopefully they have taken affect.

Kitchen FeatureBut even once I do begin my work around the house, I now take frequent breaks. Often I will set myself tiny goals like load the dishwasher and sanitize the counter tops. This may take longer now…half an hour sometimes. But once it is done rather than push myself to sweep and mop the floors, I will take a break. Sit down and check the computer again or read. I usually try to balance the two time wise. So half an hour of work and thirty minutes of rest.

The other thing I do my best to ensure is that my day is finished (except for PanKwake of course) after dinner. I have always been a morning person. Afternoons and especially evenings after supper have always been low points for me. Even more so now. I usually spend that time curled up with my Kindle…not even attempting to do anything productive like computer time. Of course, there are exceptions like Fridays with sports, swimming and a visit from PanKwake’s friend. But I try to plan for those…resting more during the day.

I have to remember in that children’s story it was the slow and steady pace of tortoise that won the race…not to rush, rush of the hare.

Those are things that are working for me at this point. What strategies work well for you?



2 responses to “Spooning…”

  1. I think that “caring for an autistic eleven year old, cooking two meals, writing a blog, and doing a load of dishes” is what most people would think of as a highly productive day!!!

    1. Thanks.

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