The Sort of Hope that’s here. Right here, right now.

Sometimes , when you have a chronic condition, you have to make choices on what gets your energy for your hour, your day, your week. There’s been something written about this that’s circled the globe a few times called “The Spoon Theory” ~ I use it when I have to explain to my new friends or even to reiterate to family why I sometimes can’t do more than a certain amount of things in one day. Why sometimes choosing to take a shower and straighten my hair means I can’t drive later that day. Or why driving and running errands means I won’t be cooking later that evening.  I just sometimes run out of spoons. I was afraid today was going to be one of those days. My family often ‘forgets’ that I am sick. Which is fine with me, because I sometimes do, too. And there are many times that I would just like to forget , as well. Though there are many , many times that I wish I *could* just forget.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

I had lunch today with my parents and 2 amazing women from Blue Cross. They brought a  giant basket filled with goodies for the Chinese Auction at my upcoming benefit. But more importantly, they brought themselves.

Getting to the lunch was challenge of the day #2. I had already showered (challenge #1)  and skipped the hair straightening because I knew I had to drive. Driving is not easy for me for many reasons. I’ll spare you those. So into the car I go. I am currently driving a 1995 Volvo. It does not have working air conditioning. Understand that I am completely grateful to have a car at all. Having no air is not a big deal for most  healthy people. It is usually just considered an inconvenience. For me it is like asking for trouble. Here comes challenge #2.  Moving air hurts me. And I can’t really expect healthy people to understand that. Wind hurts.Fans hurt.  If you ever had a toothache maybe you can understand. Picture a giant full body exposed tooth. And the wind blowing against it. It’s *kinda* like that. Or an open wound. And not only does the wind from those rolled down windows hurt me, the noise that it makes is beyond painful.( I had mentioned in a previous blog that my nervous system interprets some (most) noises as pain.)My body also does not do well at regulating extreme temperatures so leaving the windows up and just toughing it out is not an option either. I would boil.  But off I went.

By the time I arrived at the restaurant 20 minutes later I was not a  happy girl. I was in pain. Lots of pain. Seeing my parents always helps me to forget that a bit. I’ve got amazing parents. They are kind, generous, loving people. They are still so very in love after 45 years.  My father has been battling severe heart disease since his late 30’s- and my mom , diabetes. They have taught me how to fight. How to be brave. And I know that seeing me sick hurts them. So I smile as hard as I can when I am with them. I don’t ever want to be the cause of more pain for them.

Challenge #3. Chairs. Wood chairs. I shift, shuffle, get up and down an awful lot.

Challenge #4 Temperature of the restaurant. It’s cold in here. I brought a jacket. I’m already wearing a cami and a sweater. ( I couldn’t over dress because of the car….). I also always have soft socks and gloves in my handbag. Don’t worry, they get switched and washed often. Usually when I have to bust the socks out I pray no one can see under the table. After 12 years I’ve gotten less vain about this, but I’m still vain.

Challenge #5 what to eat. My immune system has changed so much since I’ve gotten sick and since I began treatment. I was never really a big meat eater now I am allergic to shellfish and nuts. Plus I have a lot of weird food hang ups. ( that’s a whole other , oddly entertaining blog). My digestive system has been affected by my disease so I have to be really careful with what I eat.

Challenge #6 As we said our good byes outside I heard the telltale whistle of the train. the restaurant was right next to railroad tracks. the noise! the vibrations! I thanked our generous guests and hugged and kissed my parents and got in my car as fast as I possibly could. ( which isn’t really fast).

Challenge #7 Back in the non air conditioned car for Challenge #8 more driving.

REMEDY: Picked Nick up from school and my day got immediately better. My son’s smile can turn my worst day around in a flash. His dimple! I needed it today like a drug addict needs their fix. But he was leaving me .. so it would be only a momentary high.

I need down time every day or I get pretty crabby. And a crabby Hope is not someone you want to know. ( ask my kids). But it didn’t look like I was going to get any today. Not even 15 minutes. I was heading straight to crabbyville -in the fast lane.

Challenge #9/10 back to  the car, back to the drive.

REMEDY:  My Natalia. have you ever met someone who is so effervescent that their mere presence changes the whole essence of a room? That’s my Natalia.

I know she can sense when I am over the edge. I know she can tell when I have reached my limit. She always has this ‘way’ of just being able to push me , to help me make it a little bit further. Today was no exception. We were driving home from dropping Nick off. She found a song she liked, turned up the radio , pushed the sunroof back and stuck her hands out and started dancing them around in the wind. It was just so silly looking . So carefree. So her.

~And with that, I wasn’t thinking about my pain.I was thinking about how lucky I was. How lucky I am.  And there isn’t any other place I’d rather be or any other person I’d rather be.

“You know, it feels good to be alive.”

* I did not write this looking for sympathy. I just want people to be a bit more understanding of others. A bit more tolerant. Just because someone “looks good” doesn’t mean they feel good.

And as I go to hit “publish” on this, I know that there are typos. Grammatical, punctuation and others. But it is late and my eyes aren’t working together any more – another Challenge. Almost forgot about that one.

I have always told my children, you never know what sort of day someone has had until the point that they have met with you. Give them the benefit of the doubt and if they are a bit grumpy , perhaps show them just a little bit more kindness. Kindness is one of the few things that are still free.

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3 thoughts on “The Sort of Hope that’s here. Right here, right now.

  1. I admire your ability to describe your … for lack of a better word… irritations. Trying to explain to someone why I can’t drive with the windows down always stumps me. Until I heard you talk about it, I never thought of some of my peeves as being related to my Fibro, but knowing you has opened my eyes to that type of thing. Oh, and wooden chairs. Can we PLEASE outlaw them??? They always have a part that digs into a tender point or sore spot, and, even with my massive amount of padding back there, they still make my butt ache. As always, you have expressed your feelings, and mine, very eloquently. ❤

    • Thank you for letting me know that I am not alone.
      *wooden* not WOOD. yes, that’s it. ugh Brain cramps.. another challenge. forgot that one. And typing, too!
      and I didn’t mention that I’ve got little to no padding back there. *.^
      I used to carry my wheelchair cushion in my car trunk for just such occasions but with all the car issues lately, it somehow got lost in the shuffle. Pity, too. I loved that thing.

  2. Hi Mommyyyy, well I’m at school OBVIOUSLY, and this is pretty much all I’ve been doing all of yesterday and today, is sitting here reading your blog and being like “Yeah, my mom loves me.” Well anyway, I blame you for me not getting any work done in any of my classes, but I love your blog.
    K well I have to go to Algebra 2.
    Love you, bye.
    xoxo. ;*

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