Random Thoughts

Bad Days…

I am not sure if yesterday was just a really bad day…if the diagnosis of RA made me more aware of all the little aches and pains that I have been dismissing and ignoring for so long…or if it was all just in my mind.

But yesterday was a struggle. I seemed to feel them all. My knees…my hips…my feet…and of course the wrist that sent me to my doctor.¬†Of course, it was rainy and cool most of the day…so I am sure that did not help. Or my Nanny would have said so anyway.

It is only natural that I have been thinking about her these past couple of days. Her misshapen fingers, hip replacement surgery and all those trips to doctors. I know that medicine has improved treatment of rheumatoid arthritis over the past thirty to forty years. I know that remission is not just possible but the goal I am committed to achieving.

But there is something else about Nanny that I have been thinking about…

Newton’s First Law

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Most of us have heard this one…objects that are in motion tend to stay in motion.

You see my Nanny died when I was eighteen. She had been battling RA my whole life. But she managed to cook dinner sometimes. To wash dishes. To do a bit of everything. Maybe slower. Sometimes with a bit of help. But she took pride in doing her part for the family.

Then my great-uncle came in. Telling my mother who was caring for her…and the whole family…how she was abusing Nanny. How Nanny should not have to do anything. He won the argument. Tore our family apart. And less than six weeks later my Nanny was dead. She gave up on life. Wouldn’t you if all you did was sit and watch television?

One of the symptoms of RA is depression. I know how that one feels. And I am not there yet…and will fight not to go back to the ‘valley of the shadow of evil’ as I call it. But it was not just the aches and pains that had me down yesterday. My mind was playing tricks on me. For the first time in a long while I doubted that I was good enough for Cookie Monster. I mean this amazing man took on a single mother of an autistic child…now she has rheumatoid arthritis too?

But through all that…I knew one thing…

Don’t give in!

Not to the pain…

Not to those doubts…

Not to anything…

So I kept going. Yesterday I also…

  • Cleaned the whole downstairs…
  • Had PanKwake’s friends over…
  • Made cookies…
  • Cooked two meals…
  • Did a load of laundry…
  • Ran the dishwasher…
  • And blogged, did social media and talked to a friend I had not heard from in a while.

I took heart in Cookie Monster’s cwtches and in the words of my friend…about how much I do get done.

Yes, all that took me longer. Yes, I had to start and stop often as I listened to my body. Yes, my mind kept screaming at me of all the other things that still needed doing.

But…I learned years ago not to compare PanKwake to other children. Not to push her. To allow her space to do what she wants, when she wants, and how she wants. As a result, she has made remarkable strides not just in executive function, sensory modulation, and mood regulation but most important she is HAPPILY autistic.

Maybe RA is meant to show me that I deserve the same compassionate self-care that I have been giving PanKwake all these years?

Then again I always believe that life is sending us messages…helping us grow…into better human beings.

Oddly enough, the first thing I saw in my Twitter feed this morning was this wonderful vlog from NeuroDivergent Rebel…one of my new favs in this continuing saga to help PanKwake be a more Happily autistic human being…

Seemed appropriate to me…

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