Monday, August 27, 2018

3X

I hit 200 pounds the other day.

I am struggling with this revolting development. This is the heaviest I have ever been.

There was no need to buy bigger clothes because I have always worn my clothes one size larger then I actually am. I just gradually grew into them.

I am under doctors orders not to exercise when the polymyositis is flaring. I've been in a flair all summer.

I'll admit my diet often is not healthy. I use food to treat my depression, fatigue, anxiety and to self injure.

It's gotten so much worse since I had my thyroid radiated and I lost my sense of taste. When I go to eat comfort food, the taste no longer comforts me, I have to over eat until I can FEEL the comfort via a way to full belly.

The other day Wal-mart was closing out there summer men's t-shirts and had all the 3X and 4X's on sale for $3.00.  I bought a bunch. I've been in 2X for some time so wasn't worried about fit.

When I put on one, there was a calmness that came over me. I realized....I have been in a quiet battle with my body since I grew into the 2X's.  I do not like tight fitting clothes. I do not like clothes that touch me, frankly, I do not like clothes at all.

So the simple act of once again wearing clothes one size two big has calmed me in a way that being under weighted blankets or swaddled helps some people.

Three years ago work nearly lost me when they insisted I wear the uniform size they thought I should wear. Yeah....this is a real thing that does affect my life.

I found a bra that fits, without touching me and my skin rashed out every where it touched me. My skin wants to be naked. 24/7. Which is an issue I've worked on my whole life.

I know I can wear buckskin without issue. I'm considering making a new buckskin/doeskin dress.

Until then. I have once again found the size that acts as a cloak of invisibility that both hides me and doesn't touch me.

Tuesday, August 21, 2018

ugh, polymyositis worries.

Latest on exercising with myositis. "You need to exercise every two days but never two days in a row."
No wonder my 4 day work week is killing this summer. Just my normal life is contraindicated with my disease.
I'm in such a flair right now that after my 4 day work week, it takes me three days to recover. I never feel good anymore.
I need to exercise to get the weight off from the prednisone. But I need to increase the prednisone to help with the flair up, which will add more weight....ahhh, hamster on a wheel endless spinning and going no where.
On my vlog I mentioned about not being able to save my children if something were to happen.  That just eats at me. Its my job to protect them. I still need to teach my daughter to swim. I can no longer do that. If she were to need rescuing, I lack the strength to do it.

This is kicking my butt right now.

But gawd damn it I look fine!

me: struggling to lift a gallon of milk into the shopping cart the other day.

Ever so helpful know it all: "Oh common it's not that heavy."

Really? Did you really just say that to me. The only reason your not getting a punch in the throat right now is I physically can't lift my arm to swing at you.

….and that realization pulls a dark shadow over my soul... I have been a victim, I have sworn to never be again, knowing that I could an would fight back if attacked ever again...that knowledge helping me to heal and regain my power....now gone. I couldn't defend my self from anything right now. I feel vulnerable and weak. 

Its frightening.

Got a disturbing phone call at work the other night. It set off my alarm bells. For the first time in eons, I was afraid on the night shift. Vulnerable, unable to protect my self of the residents/staff. That's new head space for me. I am always the one everyone says, "if there is a creeper out there, we will just send Paja out to deal with him."

I don't like being the weak link in the chain. I am used to relying on ME to provide my safety/ protection. I am struggling with having to surrender that to someone else. I can't run away physically from danger nor can I stand my ground and fight.

Not that I have had to do that much in my life, but it does happen. Two+ years ago when a man tried to break into work, I stood between him and the staff. After the police collected him, one of the girls asked, "why did you stand there? what would you have done if he had broken the door down?"

"I would have attacked him, he would have had to get through me before he could have stepped one foot into the building."

And I would have. I had the strength to do that 2+ years ago.

Now...no longer.  Polymyositis is making me feel like a victim...and I hate it.

Oh, and by the way, the proper way to respond to someone you see struggling with lifting a gallon of milk into their cart is:

"May I help you?"

Friday, August 17, 2018

Polymyositis down and up-less

As I pushed the cart across the parking lot this afternoon. I had to pause.  Standing for a moment in the baking sun. My arm aching so bad I couldn't hold them up to push the cart. Tears fill my eyes as I wonder...will I be able to drive home?

I wrestle the bags slowly and painfully into the truck. The polymyositis jumped into my arms this year. But this summer in the heat its become crippling.

But damn it to hell I look fine.

A woman made a comment to me recently as we waited in line to register my son for school. The longer we waited and stood still, the more jello-ie my legs became. The are painful to force them to stand still. Too much fine motor skill needed....and not enough fine motor ability left in my muscles. I was pacing like a caged animal. I was in pain. I had just come off a 10 hour shift on my feet, I was still in my uniform. I was in agony.

From behind me I hear. "Be patient. It won't kill you to wait."

 It was the way she commanded me...without asking why. I haven't yet found the words to stay to busybodies who butt in. I really wanted to say: 'gawd I wish polymyositis was contagious so you could enjoy this too.'

I want to take a moment and share three vlogs with you.

***jiggle warning *** * * * Heavy breathing warning * * *





If only life was all down.

So this is my first trip up the stairs.





This was my second trip up the stairs. Note how I have slowed down, my legs were burning and  jello-ie all the way up. I kept stopping because I was so afraid of falling. You can hear my kids comments. Life is like that with invisible illnesses. but you look fine, how can anything be wrong?




I think I will follow my son's advice. Find paths in life that are up-less.