Thursday, September 20, 2012

My Booty is my Buddha!

Nothing will make you feel a bit lifted than being around a 4 year old.  My mom and I ended up taking Addison to her dance class this afternoon - its a perfect type of task for me - its only an hour and I get to hang and then listen to her talk in the car and sit while she is at her class and then head back home.  Just over and hour - enough smiles without too much exhaustion.  She was having a rough day - or I should say a typical day for a 4 year old - laughing one second crying the next - it all is oddly calming to me as I think oh sweetheart i feel like doing the same thing!

As I was getting the little one in the carseat she asked me what was on my shirt - and I told her it was a Buddha - and she asked what's a Buddha - and as we are running late and I thought what is the easiest answer for a 4 year old - so i said - a Buddha watches over you and helps you feel safe.  Seemed to do the trick - and then I said okay missy can you please get your booty into this car seat asap - and she laughed with the similarity of Buddha and Booty - and kept saying - My Buddha is my booty -I'm putting my Buddha in the car seat.... and she was cracking herself up - and us too.

So I called her my little Buddha - and that she is - one who brings me joy, peace and makes me feel safe - thanks my sweet girl.  As we were leaving dance i was thinking about how this illness makes it so difficult to have or care for anyone let alone a dependent child - but if you can handle it - the trade off is priceless.  I am lucky I have not only my niece and nephew - but my friends that are so generous with their time and their children to help lift my spirits.

A few weeks back when my friends and their children stopped by and I had no choice but to head to bed while they were here - I loved how 3 of them piled in my room - played with their toys on the chair completely unfazed by their "aunt" lying in bed a few feet from them - and then the oldest seeing my oblivion had a very easy time pleading her case that she needed another back pack buddy so her two best friends wouldn't feel left out!  Little did she know at that moment she could have asked for anything and I would have said yes!  So I enjoyed listening to her tell her mom in the other room that yep, Heather said I could have another one...there is something that makes you feel safe when you are in the other room lying down feeling sick but others are just around the corner going about the rest of the evening - laughing - drinking - kids fighting - it reminded me of when I was little and would fall asleep to the muffled sounds of parents having a party - the white noise that all was okay and you could rest easy...

well - just wanted to jot a bit of the good stuff down - xo hkd

Hitting the Wall

I was signing in to write a brief post about hitting the wall - or perhaps the glass ceiling so to speak of this illness.  The past few weeks have been daunting and had twists and turns that I hadn't seen coming - and I feel like I am so close and then I hit the wall and hit it hard and it leaves me overwhelmed and feeing a bit bruised inside and out.   I have been dealing with minor pancreatitis - which is uncomfortable - worse with stress - and better with simple foods - but unfortunately so many of those foods - a simple chicken broth or applesauce I can not eat - so i feel trapped.  Would something please give -

So anyways - as I was about to write this post I saw that Sue Jackson had written a new post and right there in the text - the same phrase....hitting the wall - so i thought i would instead of sharing my own experience right now I would share hers....peace to all those out there hitting a glass ceiling - remember at least through glass you can always see the light...hope one day at a time for strength we don't know we have but prove it every single day - and are reminded by those we love its all worth it...(alright so i decided to briefly pour out my hitting the wall big moment and it seems i have been hitting smaller ones ever since)

I was feeling this way because I didn't make it Madison - my inner Thelma let me down...I had done to much in the morning but was feeling pretty good - I wasn't able to eat much - but I wanted to go so bad - I was just craving the freedom - my mom offered to drive me which although I really didn't want - not because I didn't want her company just because I wanted my old self back - but i knew it was too much to drive myself and not safe - so that would be stupid - so we left Home Depot where we were deciding on appliances for the condo in Arizona - all the damn bright lights - bad air - many decisions - started to get to me - but I was holding my own - then we headed out and despite being able to see the freeway and knowing how to get to Madison we started listening to the little computer lady that had decided to take a unwanted tour of the town of Waukesha and it was so frustrating with her little voice and we were all turned around and this simple trip wasn't feeling so simple anymore  - we finally get to the freeway and I began to feel it coming in a big wave - that same feeling of complete meltdown - but I closed my eyes - looked out the window - thought of the finish line and then I figuratively smashed into the wall and we exited the freeway - pulled into the Harley Davidson parking lot across from a hosptial about half way to Madison and I was shaking - couldn't breathe - a combination panic attack and body collapse - and the same thing - I just broke down sobbing - I texted my dear friend Thelma would have to fly another day...and as we drove home I was so thankful for my mom and thought what will i do without I could tell this was as painful for her as me - I kept saying over and over I just hate myself I hate this illness I hate being me...I just wanted to escape it so bad leave it behind - I just want something to give - the food allergies - the panic - the fear - the aches - the pulsating pancreas - the blood pressure issues - the infections - this hamster wheel that has trapped me and exhausted me.

And you know what my friend texted back...I believe in you...and another...I trust you....and my mom - I am so proud of you - and that is all you can ask for and more - when you give up on yourself that others don't.  Craving comfort - I hear you Sue -

Learning to Live With CFS - Sue Jackson


Hitting the Wall and Craving Comfort

I hit the wall last night during a book group meeting and had to abruptly leave in the middle of our discussion.  I literally ran to my car, feeling as if I would fall apart if I didn't get home, to my bed, as fast as possible.  I felt as if my entire nervous system had short-circuited.   Up until then, it had been a pretty normal - even good - day for me.

Tuesday's nasty wet weather had passed through, leaving my extra aches and exhaustion behind with it, the sun was shining, and I felt good.  I felt like myself - able to concentrate and focus on what I wanted to do, able to write, even a bit energetic.  I  took a longer walk than usual - a whole 45 minutes!  I wore my heart rate monitor and carefully stayed below my AT, but it was so nice to be out in the sunshine and feeling free.

I took my daily nap after lunch and jumped up at 3:15 to go meet my son at his soccer game.  I was a little tired, but that's normal when I first wake up.  I found the school and saw that their soccer field was a long, long walk from the parking lot, so I carried my chair and my bag over there and sat to watch the end of the game and chat with another mom.  Craig and I came back home, and he wanted to watch TV, so I went up to my bedroom so I could finish my novel for book group.  As I crawled into my bed, I realized I was feeling pretty achy, but I figured the rest would help me.

At 6 pm, I still hadn't finished the book (20 pages to go!), but it was time to meet my two closest friends for dinner.  I was a bit worn out but attributed it to hunger and the late hour (we usually eat an early dinner to address Craig's and my low blood sugar).  I drove over to the restaurant in my old VW convertible, enjoying the mild weather and fading sunshine.  I thoroughly enjoyed dinner with my friends and getting caught up.  I felt the beginnings of a headache but attributed it to waiting too long to eat.  I took 1 Sudafed, hoping it wouldn't be too much too late to disturb my sleep, and the headache faded a bit.

The beginning of the book group meeting was great.  We had a nice turn-out, and everyone had enjoyed the book.  The discussion was lively and interesting.  I felt fine at first, but gradually, symptoms began creeping in.  My headache started to worsen.  My legs began to feel achy - just a bit at first, then worse and worse.  My face started to flush and I felt hot all over (obvious OI symptoms).  I tried elevating my legs, I drank lots of water, but nothing was helping.  I was watching the clock now.  We had started to discuss choosing our next book, so I thought I could make it to the end of the meeting.  And, then, suddenly, I couldn't.

That phrase, "hitting the wall," is the perfect description.  I just suddenly felt as if I could not stay in that chair for another moment.  I abruptly stood up, grabbed my bag, made a quick apology, and fled.  The top was still down on my car, and it was a cool evening, but the chill felt wonderful to me.  I tore out of the parking lot and drove home as quickly as I could.  I took big gulping breaths of the cold night air, feeling as if I'd been suffocating and suddenly had oxygen again.  I got home in record time and went right up to bed.  I wanted to get into comfy clothes but couldn't even manage that at first.  I crawled into bed and under the covers and started sobbing uncontrollably, both from pain and discomfort, as well as relief.  I was shaking.  I've never been so glad to be home in my life.

When I calmed down a bit, I limped over to the dresser, peeled off my clothes, and pulled on my oldest, softest pajamas and big fluffy socks.  I crawled under the covers again and picked up my book, thinking over and over how glad I was to be home.  I was craving comfort - anything warm and soft.  I just wanted to be a child again, to have someone put their arms around me and comfort me, tell me it was OK now, I was safe, and pat my back.  I asked my husband for a cup of mint tea and slowly relaxed.

I woke this morning feeling as if someone had thoroughly beat me last night - sore and achy all over, exhausted.  I am still craving comfort - wishing my mom were here to make me homemade custard like she did when I was a kid.  I'm wearing soft yoga pants and an old t-shirt, bundled up in a fleece blanket, and still aching all over.

It was an unusual experience for me just because I can normally read the warning signs better than that.  Even though the symptoms came on gradually over several hours, they seemed to come from nowhere.  This is THE defining characteristic of ME/CFS, right?  These sudden crashes - that is the only word to accurately describe it, a crash.  Who knows what caused it this time?  The long walk in the morning?  Doing too much all week?  The extra walk at the soccer game?  Or perhaps even a viral trigger my son brought home from school - he spent 2 days earlier this week in a mild crash from being exposed to something at school.

Sometimes, it doesn't matter what caused it (and certainly, you can drive yourself crazy trying to figure it out), but isn't it amazing that this crazy illness can still surprise me like that after 10 years?  Ambushed.

Maybe I could make custard using coconut milk....

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