Wednesday, March 28, 2018

Wednesday, March 14, 2018

Fear

Sliding.

sliding down a slope I can re-climb.

The polymyositis is kicking my ass.

A few years ago the changes were minor and came and went.  Now there here and worsening at a frightening pace.

My thigh muscles are so bad that I can't get up from the floor or a squat without having something to pull my self up with. My arms are worsening also.

You can't see the muscle damage, you can't see the muscle wasting.

I walk close to the walls. I fall into them like a drunken sailor. Without them I would fall on a daily basis. My left thigh muscle is wasted and unresponsive. I do anything physical and its hours of muscle weakness.

All I did today was slowly and with lots of breaks, clean my daughters room and wash the house windows.

My arms are weak and floppy tonight. I have no strength in them.

My biggest enemy in all this is fear.

Fear of the unknown.

But it's not unknown. I've worked in long term care for 35 years. I KNOW MY FATE. I KNOW WHAT WILL HAPPEN WHEN MY MUSCLE TRAP ME IN A WHEEL CHAIR.

I KNOW.

I KNOW WHAT HAPPENS TO PEOPLE WHEN THEY HAVE TO RELIQUISH CARE OF THEMSELVES TO OTHERS.

and I don't wanna go there.

My children are struggling to understand my illness.  They can't see it. Polymyositis is an invisible illness. I look okay on the outside.

my heart breaks and the fear creeps in.

I took care of a lady with multiple sclerosis. Another muscular disease. She had scars on her thighs. She told me when she first got sick, her daughter thought she was faking and stabbed her in the thighs with forks.

My kids can't understand that by the time they have their own kids, Grandma Pee won't be able to hold them. Hell if they had babies right now, I couldn't hold them.

My labs are changing too. So much so they increased my prednisone.

My ability level has deceased too. So much so I had to tell my employer I needed to modify my work.

That broke me. Broke me.

Once you loose things, you don't get them back.

And I inch closer to that wheel chair.

'Cept it no longer feels like I am inching toward that looming wheel chair.

Now days it feels like I'm tumbling head over heals down a steep cliff and the chair is there waiting for me to cartwheel into it. This is happening a lot faster then I am prepared for.

I'm frightened.

Sliding.

sliding down a slope I can re-climb.

Tuesday, March 13, 2018

Eating with little feet

My son and I ditched the other two sick family members and went out to Denny's yesterday.

I enjoy it when my son spends time with me. We get into deep discussions and I get to see into the mind of this amazing human.

After we order he looks around and comments, "I think this is the first time its just been me and you at Denny's alone."

I smile as wave after wave of nostalgia washes through my mind. "No." I say. "We have been to Denny's many, many times, just the two of us."

He cocked his head and gave me a quizzical look as he searched his memory.

"You would usually get under the table and drive your hot wheels. I ate quite a few meals with your little feet across from me and you laid on the seat playing. I can still recall the looks of people who would glance over and see me talking to the empty booth."

He grinned sheepily. "I kinda remember that now."

It's a really shame, he doesn't remember all the time we spent together, and all the things we did. We had so much fun. Just him and I.

Such a little light he was, as I showed him this great big world and all its wonders.