Saturday, March 31, 2018

The Easter Bunny kicked my ass

Today has been....a day. Two days in one I suppose.
Sometimes what it means to have a chronic illness is parades and Easter egg hunts in the morning with tears and misery in the afternoon.
I try to stay positive, but today I can't. And what I need to get through to my heart is that that's ok.
It's hard to admit that and to feel that. It feels a bit like a war in my chest. I believe we've discussed this before.
Today was a great great day. This morning was amazing fun with friends at the park where my son got to be in a parade. They did an Easter egg hunt and played on the swings and monkey bars with classmates and old friends. On the way out we got popsicles and tacos from the taco truck. It was warm and beautiful. Idyllic. I made it, I loved it and I was blissfully happy for those almost 4 hours.
I could leave it at that with a remark about how determined I was to do it and how I'm "paying for it but it was worth it!" And I am and it was. But I think feel like in order to learn to be okay with my bad days I need to not always put a happy face on this chronic illness led life we lead. I like to write about my victories or learning from my failures, but today I need to be completely honest and show you what the positive attitude, pushing through the illnesses, pushing through the pain, pure stubbornness and getting out there to do what I WANT to do with my sweet kids and my wonderful husband, rather than what my body wants me to do, looks like after the fun. What it feels like and my "right now" after the Easter Bunny kicked my ass.


No, there is nothing you can do but thank you for the thought 😊
Yes, I will be ok
No, this is not at all unusual or unique. My husband came in to ask if I needed anything and then went back to working on the house because this is just our norm.
Pizza was ordered for dinner.
I am going to try to sleep now. It is 6:40pm.
That's a day in the life of a chronic illness battle.

But it most definitely WAS worth it.... 

Thursday, March 22, 2018

Riddle couldn't be solved

For those of you with an interest in how I solved my riddle.... I didn't.

The first thing to go was my shower of course (thank goodness for dry shampoo!), Then picking up R since my friend usually brings her home on Weds anyway. I was only getting her today because of the dentist, so I was thinking I could just be late to the dentist and have my friend bring her home. Next was a different friend picking up B while she was out running errands (which B was very excited about!).
The treats were easy to solve with cookies at the house and the passport pictures can easily be done a different day (as long as it's before Monday).
I got to about 45 mins before the dentist appointment and realized there was just no way it was going to happen. Yes they charge for cancelling so late, but sometimes money just isn't important.

The good news is staying in bed all day seems to have helped and I feel better today! So there's that at least.....

Wednesday, March 21, 2018

Riddle me this...

So here's my pickle today....a riddle for you. I need to get b at 1130, then R at 1. Take them both to the dentist 130-3 and then to fed ex for passport pics. And I, of course, promised them we'd go to the cafe after for treats if they were good (and coffee for me of course) But every time I move I
whimper in pain and cuss loudly. So how does Kim get from point A to B to C to D to E to F and finally back to A..... oh and I haven't showered since Sunday so that probably needs to happen in there somewhere too.
Aaaand....go.
Anyone?

In hindsight (cuz that is where I Excel with 20/20 vision!) the prettiness of my house is not worth this level of pain and fatigue. Screw you house numbers and light fixture and hose holder and doorbell and paint touch up! No matter how awesome you look (and they do...)
Ok....
Typing that out out made me
realize maybe I did just a smidge too much (but I took breaks!!!). But that was two days ago. And I was feeling good that day! Come on already!

So...

Vs 

Are my choices today.... except in reality I don't actually have a choice.
So, into the shower I go.

Saturday, March 3, 2018

Towels and Ms Frizzle


I'm sure you all are used to me spouting off about the unpredictability of chronic illness, but seriously!?
I've gotten to the point now where I panic if someone asks me to commit to something in the future. Even the next day. I worry constantly about letting people down.
One day I feel like I can handle life. I walked into Target the other day in only mild pain and thought "whoa, is this what people feel like?". I even went and got my one thing I needed without a scooter. Let me repeat that- without a scooter. 
That means I walked on my own two feet to the bath section, picked up the towels I needed and walked back to the registers. I am honestly not sure when the last time was that I went to Target and did not use a motorized scooter.
In short I was killing it that day. But I actually did make sure not to overdo it because I'm really trying to be smarter 😜

Fast forward to the next day...
"I don't know what happened but my legs just won't move. They weigh 100lbs each and feel like when you hit your funny bone"

M: "I think you over did it"

"By buying towels at Target and taking my kids to school!? What kind of life is that!?"

Surely you can sense my frustration on that day.
I don't get it. I just don't. I examine what I eat,
what supplements I take, how much I sleep, how much I do- everything down to which SHOES I wore the day before to see if I can find a pattern.


There's an episode of The Magic School Bus where Ms Frizzle shrinks the bus (of course) and they travel inside a sick classmates body. I really need to find me a Ms Frizzle.
 


Expectations


So, I'm reading a book about a Dr who almost dies and then has to live with chronic illness. It's a really good "both sides of the line" book. An interesting thing she mentions is comparing working toward putting on her socks to when she worked toward an intricate and very difficult yoga pose (pigeon pose). This made a light bulb go if in my head in terms of our perceived notion of whether or not something is or should be worth the effort it requires. Working 12 hour days toward a job  promotion is "worth it" and that person is congratulated and told how hard they've worked and celebrated.
A person working toward getting out of bed to go to the bathroom instead of the bedside commode is not celebrated, not recognized for their hard work but most importantly the person doing the work has very different reactions.

I could go so far as to say in our society as a whole we are ok with working hard toward a perceived difficult accomplishment that others will notice and accolades will be given, we will take the time and map out a plan when it's something we see as worth while and not necessarily expected of us. But, when it's something basic like putting on your socks, standing up, walking to the bathroom or anything else that is accepted by others as a daily part of mere existence it seems to send our brains into confusion and defensiveness.

[Pretty close to an actual conversation I've had]
"How is your training going for that marathon?"

"Man, it's so tough. It's been a month, I've had some setbacks and had to cut back on my distance a bit for a little while, but all in all I'm still on track to run it in 2 months! I'm so excited!"
"Good luck! That's awesome!"
This affirmation takes on completely different meanings in each conversation.... 








Or
[Also an actual conversation I have had]
"How is your physical therapy going to get you to walk all the way to the kitchen without your walker?"

"I'm so pissed and annoyed, I had a setback this week so I had to go back to only going halfway and build up again from there"
"Oh that sucks, I'm sorry. I'll bring you some chocolate and coffee tomorrow."

Does anyone besides me see the huge difference in terms of expectations of ourselves and our attitude toward our accomplishments when it's something we think we should just be able to do, vs something above and beyond what is expected of us? Something we want to do?
I can clearly see why the person trying to get to the kitchen is angry and upset and I see now how that will affect their ability to accept where they are at. Nothing more, nothing less, just where they are at. You can't accept a limitation in your life when your unconscious expectations are so much higher than that limitation. You can't be at peace with a limitation and overcome when you refuse to accept it without anger or frustration or blame.

Huh. So why do we judge ourselves so harshly for working hard to accomplish something expected vs not expected when they may require the same amount of work?
Clearly it has to do with outside opinions and worrying about the way the world sees us right? Because WE know the difficulty level is real.
So is it that by not being able to do something basic we see that as a failing even though it's a legitimate difficulty?

Why is it perfectly ok with me in my head that I can't run anymore when I ran for years, but it's definitely not ok in my mind that I can't walk up a flight of stairs most days? Or walk the entire distance to my daughters classroom from my car? Is this my expectation or society's? Is it ingrained that one is required and one is "optional" and that somehow it makes us weak to need to work harder than others at the required activities of life?
Is that what makes us angry and frustrated and depressed?

I think it is a societal perception thing as well as personal expectations. The question is where do the personal expectations come from? Society? So is it a vicious circle?

This fascinates me now.....