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.... 

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.....

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.

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.....

Cold happiness

I made it! I did it!
This morning I got the ok from R's teacher to go on the field trip. I sat in my car at my son's preschool after dropping him off giving myself a pep talk.
"Suck it up buttercup and make your daughter happy. Let's do this!"

So I grabbed a coffee and my pain meds and drove to the field trip they walked to and when I walked up.... I tripped over something and was looking down holding my enormous requisite coffee when I was hit by my little blonde tornado in a huge bear hug.
"You came! You came!" The smile looked like it

would break her face in half.
I was dragged from person to person in the "this is my mom", "that's my mom" rounds and the other parents looked confused as to why this was such a big deal. But it was for us.
It was a great day! It was an outside field trip literally on a beach cliff overlooking San Francisco Bay. Beautiful and very very cold. And very very windy. Two of the worst things for pain for me. The first time I can make it to a field trip and it's one of the coldest days in San Mateo! Luckily in anticipation of being able to go I left the house in layers, a parka, hat, gloves, comfy warm boots and a scarf so it was just fine. I'm starting to get the hang of this "be prepared" thing.
I did learn I'm not the greatest chaperone. I am extremely chatty and very outgoing so I kept getting caught up in conversations with the other sweet moms and losing my kids. Ha! Luckily it's a very small, completely contained place and the three kids I had were my own, my good friends daughter (one of my daughters best friends) and one of my girl scouts 😉 so if any parents of kids in our class are reading this everything was just fine.

I can't say it enough. This was just another reminder of how we need

to appreciate seemingly simple things in our child's life. My little girl is so used to me not being able to go places she was expecting me not to come. The surprise was huge and so happy and probably something she will remember in her future. In one way I feel like it's good because she appreciates these things more than other kids with healthy parents, but in another way I really wish she could take for granted that her stay-at-home mom would go on her field trips and volunteer in her class.

Of course, if I was healthy enough to do those things regularly I'd be working and still not actually able to go. Hmmm.... Life is one big catch-22 isn't it?

Bad idea + optimism= mommy

Tomorrow my daughter's class is going on a field trip! It is to a place which is a mini (very mini) "zoo" and a small science museum. It's a local treasure, perfect size for little ones, hands on exhibits and right on the San Francisco Bay. You may be able to tell I actually really love it there.
It is about a mile from my daughter's school so they generally walk there and back, going on this field trip at least once a year.
This year she is begging me to chaperone. Begging. Usually when I say "I'm sorry honey but that's just too hard for mommy's body, I just can't do it I'm sorry" she is disappointed but understanding and resigned.
This time she's relentless going so far as to tell me she overheard two if her friends commenting on her "mom not even being able to get out of bed sometimes because she's so sick". She told me this with tears in her eyes and an imploring look on her face. Whether or not the story itself was completely true, the emotion definitely was.

See I sort of got myself into this mess when I spontaneously decided to volunteer in my son's classroom when I started pulling through the neuro attack. He's in Pre-K so it's a pretty easy volunteer job and was a lot of fun. That's when the begging started for me to volunteer in HER classroom. I actually really do enjoy it and I did have every intention of doing so, but her teacher has still not responded to my email about

helping in the classroom. Then the field trip slip came home and the extreme disappointment and sadness began.

So, mommy guilt strikes again. Though truly she doesnt complain nearly as much as she could. She is extremely helpful to me and her brother when I am stuck in bed and this is the first time this has seemed so important to her. Maybe her friends did mention it. Maybe she's tired of her mom not being able to volunteer or even pick her up from school sometimes. Maybe she just wants me to go and that's that. I don't know what it is but I decided that I will go on the field trip tomorrow. I won't walk to the museum just to be on the safe side, and with her teachers complete knowledge of my health issues I think I will be fine. I know the places very well so I know I can sit if I need to, go inside when my joints start to freeze up and stiffen (being on SF Bay in Feb is gorgeous but very damp and not so warm) and I will have my car if I need to leave early.
So four hours on my feet wrangling a bunch of 7 year olds..... What could go wrong? 

Not without my meatballs

Am I the only one who finds IKEA completely exhausting and overwhelming?
My stamina on my best day is not up to the all day commitment that is the swedish Haven of....well everything. Today was not one of my best days.
We are remodeling our house. Yay! We have already had it painted and are now moving on to built-in cabinets in the living room, among many other things.
To make this "easier" on ourselves we thought we could try some of the DIY hacks that use IKEA cabinets as their frame and base and just fancy them up to look built in. So off we go with both kids to the worst place to take kids to.
Another important point- my husband and I are not shoppers. We both despise wasting time shopping. We don't need/ want/ like "stuff" (for real,  no one believes me, but I love empty shelves and drawers and I truly do not understand chachkes or knick knacks. They are a mystery to me. Why do you have stuff you don't use that just sits there collecting dust? Yes it looks pretty at first, but scientifically we no longer see the things in our house after a while.... But I digress). Shopping also just so boring and frustrating. But, for some reason we were both excited about this adventure. Not for long!
Many moons, measurements, reprimands and time-outs (who knew B could fit in a dresser drawer?) later we called it quits and headed for the cafe for our requisite swedish meatballs reward.
Standing in line I abruptly realized I needed to get home quickly because my body was rapidly

failing on me. And yes it happens that fast.
What does that mean exactly you ask?
Well, let me tell you!
It starts as an almost tingling all over my body. Not a pleasant tingling but an ominous one that threatens things to come. My brain begins to get extremely overwhelmed with activity around me and can't process things very quickly. Hello crowded IKEA cafe with two small children!
I told M, my hubby, that I needed to go home. Well versed in this sudden change of mood and direction he asks "do we need to leave the meatballs and leave now, or do you want to try to go sit and I'll finish up getting the food?" (It is cafeteria style).
I love that man. For so many reasons but this intuitive, knows exactly what's going on and what choices to give me moment reinforces it yet again.
"No. I want my meatballs. I walked all around IKEA. I deserve meatballs. I'll get us a table."
The 4 yr old and I wandered with him looking for a table and guiding me holding my hand.
When our meal was over I walked like a zombie around the winding path that is the "exit" from this giant warehouse full of everything you could ever want. I couldn't correct (yell at) my kids, I couldn't focus on anything and I was concentrating so hard on putting one foot in front of the other that I tuned out the world around me. I vaguely glanced at the curtains "oh I wanted to look at curtains", I strolled past rugs "oh M mentioned he wanted to look at rugs. Wish I could do that", "it's a Shame I can't look at picture frames and maybe new bowls"..... Flitted through my head as I repeated "left foot, right foot". My body melted into the passenger seat of my car, my ability to drive on hiatus for now, and I grabbed my medicine bag. I don't remember much after that, but I can almost guarantee it involved me crawling into bed.

And in the end we decided not to buy pre made IKEA cabinets and to go completely custom from scratch.

Girls with bow and arrows

My daughter's girl scout troop (that I am a co-leader of) is eligible to go to a weekend camping trip the Girl Scouts put on for all Girl Scouts of all ages in Northern California. It's in June and it's called Camporee. (I feel like I need to cheer or something when I  say that.... 🎉). I have been looking forward to this for 2 1/2 years! We all sleep in bunk beds in cabins. The girls get to go canoeing, do archery, swim, do crafts, climb rock walls and sit around a camp fire at night making s'mores and singing Girl Scout songs!! I mean how can you not want to go!? I really really really want to go. Aside from the fact that it sounds incredible (I get all excited when I think about trying archery for the first time!) this is a big "mother/ daughter" bonding weekend ... I think you can see where I'm going with this.....
My daughter once wrote that her favorite thing was going out to lunch just her and mommy. She requests "mommy/ R days" all the time and Mondays after school is our time while her brother is still at daycare. Last week we had a girl scout meeting at another leaders house and she was over the moon excited when I said I was going....it's been a while since I've felt up to going.
By now you have figured out that my little girl would love nothing more than her mommy going with her, without our boys, for an entire weekend to camp and have an amazing amount of fun. So, when I got the email invite I was excited to sign up and instantly said "we're in!".




And then reality set in. Huh. Can I physically do this? How can I do this? I asked a co leader who's been there for her opinion and rundown, so we met for coffee this morning. But first, last night I texted my good friend who seems to know me so well in this capacity and who has been to Camporee many times.  This is the text I received back....

So now we start with the hard questions. Why do I want to go? (Well duh) Do I REALLY think I can do it? What would be the plan for the day we get home? (Most likely in bed all day) What can I do while I'm there to make it easier? What is my emergency plan if my body fails me? 

I'm determined to figure out a way to go over the next few months so stay tuned! 

Feeling good with my mom guilt

"We have to go home and do valentines today! Mommy you can help me! Except..... Do you feel good today mommy?" Said in the sweetest 4 year old boy voice you can imagine broke and swelled my heart again today. Just when I start to think I have a handle on it..... 

As a matter of fact, after dropping off my daughter and carpool this morning, dropping off my son, coffee with a friend, an errand for my son's Valentine's day party, talking with/going over everything with our painters, picking up my daughter and carpool and picking up my son I really wasn't feeling good. I did feel ok this morning, but the days just destroy me still. I  wanted nothing more than to lie down and rest for a few minutes, but how do you say no to big blue eyes and the sweetest 'almost boy but still baby' voice?

The answer is you can't. Seriously U.S government you need to use cute 4 year olds as interrogators because you just can't say no to them. 

Anyway, we did 32 valentines (with stickers and tattoo inserts! Because I'm a masochist apparently), and laughed and chatted and had snacks and it was fantastic. Yet another day I need to remind myself these moments go fast. 

So so fast. How many more years will this sweet little boy want nothing more than for his mommy to sit with him and help him with his valentines? I'm so glad mommy guilt kicked in today. Sometimes I guess it can be a good thing....😉