Surprise Spoons

I am SO very blessed with good friends.  I realize many people think it is odd that I call my friends in the box (internet friends) real friends…… just because I never met them in person.  But when you share so many experiences and day to day events, they truly become friends.  Whether sharing on a favorite website (MQR), on blogs, thru email, by phone, or any mix of those…. I have come to know and care about lots of people that I consider friends.

So today I got an unexpected surprise from one of those friends.  A package came today from Andi, another longarm quilter from South Dakota.  It was wrapped in pretty gift paper, with a card that I would guess she made.  She is so very talented.  Andi wrote the nicest note in the card about my blog, me, and why she sent this to me.

I am not someone who cries often.  But I was SO touched by Andi’s kindness, that I cried when saw the bag.  It is the most thoughtful and appropriate gift Andi.  Thank you so very much my friend.

———————-

It rained last nite.  And alot of the day today.  Rain/snow mix tonite.  Colder temps the next few days.  So the contractor wont start  the garage until next Wednesday.  Maybe.  I am not holding my breath.  How can anyone predict the weather?  The weather man surely cant!

Elvis pants and spoons found

ok, im not editing tonite.  youre lucky to get this much!  so put in the caps wherever you wanna.  no excavating today, but it was still a great day.

so today i went to the thrift store.  local thrift store is umm, well….. not quite as upscale as salvation army.  and not nearly as nice as goodwill.  and if you live in mormon country, you are lucky enough to have di.  gosh i love di.  my sister thinks im nuts, but really.  i love di.  (deseret industries)

today was fill a grocery bag for 6 bucks day.  gotta love that.  cept i rarely find enough that i want to even fill a bag.  and im not even a very discriminite shopper.  (as you will all be able to attest to by the end of this post)

so i went to get some linens to recycle into postcards.  cept there was a little 80 somethin old lady in my way snappin up EVERY fricken hand embroidered ditty.  her daughter (who was older than i am) kept tellin her,  “mom, put it back, you dont need it.”  i kept my mouth shut and didnt even yell “yeah, put it back cuz I need it to cut up into postcards!”  nope, i was nice.

so im browsing around seeing what else i can find that would work for the recycling postcard theme.  and I SAW IT!  i found ELVIS pants.  hot pink,  ELVIS jammie bottoms.  FOR ME!! i didnt even care if they fit or not, i had to have them.  so i tuck them under my arm, fully prepared to pay 6 bucks for these pants.  well…. i may as well look for a pink shirt to make it an ensemble.  lucky day!  i found a shirt!  next i found a stack of quilt books.  by this time i was kinda loaded down, so i stacked my stuff up at the counter. …… next to the old lady’s stack of stuff, including her lovely embroidered items.  i kept browsing, but would not leave my elvis pants at the counter, fearful someone may accidentally get them in their own pile of crap nice things.

i did finally find something that may work for my  postcards.  (that turned out to be the bonus in this eventful trip.)  along the way i found some NEW jammies….. still with tags on them, PINK and in my (fat) size.  WOO HOO i was on a roll.

then i saw it.  i could NOT believe my eyes.  i walked to the shelf with adoring eyes, carefully setting my purse and ELVIS PANTS down…… to touch the CHICKEN.  i had to take this fine bird home to add to my new bird collection, even tho it wasnt a pie bird.  it was one of those moments. ….  when you know that something was meant to be.  yep, that chicken was going home with me and elvis…. well, at least elvis pants.

fast forward……..

i get home, show steve my purchases.  he is a little bewildered, but absolutely entertained that i am so happy with my six dollar purchase.  he says something about “elvis would NEVER wear those pink pants” with  which i retorted “thats exACTly why they are so darn perfect!  wouldnt susie love them?  what a scream…. i can hardly wait to tell her about them!”

so i washed my new jammies, hung them on the line… so proud of em flappin in the breeze.

several hours later (after finishing that darn quilt… pictures tomorrow maybe) i went to get my new ELVIS PANTS off the line.  and i notice a little tag sticking out of the side of the elvis pants…. kinda like a tag on jeans.

oh

my

god

i can NOT believe my eyes.

surely i am smarter than this.

no.

surely.

no.

oh my god.

did i tell you that the ms has caused me to be dyslexic?  did i tell you that it can be amusing?

i laughed so hard i cried.  and called my sister and we both laughed so hard we couldnt breathe.  steve is still laughing.

do they fit?? does it matter?  i’m keeping em!

and that chicken??  here it is.

and in its place with the flock

in case you dont understand why i HAD to have this CHICKEN…..

cuz it has not just one, but FOUR

S P O O N S !!!!!!!!!!!!!!  Yay!  i FOUND SPOONS!!

(i’m pretty sure it is cuz fannie sent me her spoons that i found the chicken.  can i name my new chicken after you fannie?)

Spoons: Plastic Spoons

I have had so few spoons lately that I havent blogged as much as I would like.  I have conserved spoons for things that are at the top of the priority list to get done.  Not that you (the readers) are not important… but things like showering and sleeping and eating and helping Steve with what I am able to do…. those get top priority.

Yesterday I went to see my doc.  Gosh I love her.  She is one of the best human beings I know.  And we decided (yes, she and I decide these things together) that it was time for plastic spoons.  That means a little drug therapy.  For me, high doses of prednisone, then tapered to low dose, works best if I get on it soon enough.  Hopefully this is soon enough.

I call prednisone plastic spoons.  It is such fake energy.  I have to be careful to not overdo because I will want to.  I will feel like superwoman part of the day and then I will slam into the wall of no energy.  That doesnt feel good.  Neither does the high.  It isnt a good high at all.  It mostly feels like a bazillion bugs running around inside my body all jittery.  Like a bazillion cups of coffee and then some.  Yuck.  And it makes me queasy.  And jittery.  And snappy snippy.  Not bitchy exactly, but dont get in my face either!  Cuz it wont take much to have me get right back up in yours… maybe intolerant is a better word.  Of myself and others.

Plastic spoons.  Thank you doc for giving em to me.

————————-

Hopefully the excavation of the construction site starts tomorrow.  If so, I promise I will return with pictures!

Hopefully I can finish a quilt tomorrow.  I started quilting it Sunday.  It normally would have taken a day and a half.   Tomorrow will be day 5.  ugh.

Spoons Chapt 2

More on the spoon theory….

Kind of a hodge podge of things I have been thinking about, as well as some things others have asked me about privately this week.

The “ustacoulds” …… that means I used to be able to…. used to could…a term I used often when I was first sick. Actually, I still use this term. My Mom would flip out every time I said it. It was SUCH poor English! (yep, I am good at that!) What it means is that I used to be able to do something, but can’t anymore. Thats a ustacould.

Both Judy and Sammi are having trouble sometimes with their ustacoulds. Heck, dont we all struggle with that? Just getting older there are things that fit ustacould. I ustacould do back handsprings and the splits when I was 18 and 25. I ustacould play volleyball for hours, or swim laps too. Bet there are lots of things you ustacould too.

Illness can take things away. Energy, physical ability, mental agility, memory, finances, …. heck, the list can be endless. Mental illness, depression, GRIEF….. all these can also take your spoons away.

So one of the questions this week was: “When the rest the world expects me to do XYZ and I cant any longer, I feel like a slacker. What do I tell them?”

My answer was that you dont owe them an explanation at all if they are just being nosy. But if they are former clients, or are family/friend then you can use the spoon theory to explain it. Beyond that, the guilt is really YOURS. YOU own it. They dont make you feel guilty, you make you feel guilty. Guilt is an internal phenomenon. But I also think guilt comes from grief and anger and the whole mix of feelings and emotions.

I’ve also been asked this week about grief. Why does it feel so bad emotionally to be sick? Well… because we are grieving what used to have. We grieve that our bodies dont do what they ustacould. We want them to. But they dont cooperate.

So instead of focusing on the negatives of what used to be….. why not focus on the positives of what IS or what CAN BE?? Heck, what if there is some way to flip your circumstances to a new opportunity that you never dreamed possible? And that truly wouldnt have been possible without THIS set of circumstances?? That has happened to me. I am able to do artistic things that I was never able to do before. Not just because I didnt know how, but because I was not inspired to, had not time to, and because I didnt FEEL that I could. I had never seen the opportunity. If it had been there before, I had not been able to see it or had not been paying attention. I bet that is true for everyone else too.

For those still getting used to the big changes in life…. whether it is because you are dealing with a relatively new illness, or loss of a loved one, or some other crisis… here is my advice:

1. Know that there will be anger, fear and a whole host of emotions. Learn to deal with those constructively. Find a mental health professional if you need to. Find your “new normal” lifestyle. (boy is THAT hard, but it will happen)

2. Know your body, and your head. Know when you need help and then ASK for it. All of your friends and family have offered to help, but honestly just dont know what to do for you. So give them a gift by asking for a specific thing that you need help with. Ask them to go to the store, cook a meal, drive you somewhere, come to visit for 10 mins, whatever it is you need.

3. Learn to say thank you. When you arent used to asking for help, you arent used to saying thank you. Make sure you thank anyone and everyone for the help they give. And thank your health providers too.

Okay….. I am officially out of spoons for the day!

Wishing you LOTS of spoons in the coming days. And wishing myself a few too, as we have tons of work to do around here. Part of MY work is napping everyday for an hour or 2 to get through the whole day.

Oh… and thank you to all of you who have gone to read the spoon theory. I am impressed that so many did. WAY more than have commented. But thats ok too. I hope it has helped lots of you. And the commenting back and forth has not only helped me, but I think you are helping each other. What wonderful readers I have! I am blessed indeed.

SPOONS: CHAPTER 1

Thanks so much for coming back to my blog after reading the Spoon Theory.  Wasn’t it great?

 

So why did I send you there?  What is on my mind?  What the heck am I doing? 

 

I am not sure I can totally answer that.  I have been “led” in the last week or so to think and talk about this topic.  It seems most everyone I have talked to in the last week is struggling with one side or another of this issue.  Either they are taking care of a friend or family member, or they are struggling with their own illness.  They are all baffled as to what to do about_______ (fill in the blank with any number of issues).  And they ask me.  And I tell them what I think.  And what I think is based on my many experiences of living both sides of the theory.  So I thought I would blog about it.  Some of their experiences I will share and some I won’t.  But I will share many of mine along the way.  I don’t know how long I will do this… a few days… maybe a week.  Depends on how many spoons I have! 

 

So let me start with just some general issues for those of us who have limited spoons.

 

COPING:

 

So many times in the past 18 years, people have asked me how I cope with a chronic illness.  It has not been something that is easy to explain.  At least not so that healthy people “get it”.  That is why I like the Spoon Theory so well.  It puts the message across quickly, succinctly and powerfully.  The analogy works. 

 

I used to tell people (much like Vicki does, as she commented in my prior post) that I have 3 options:

1.  shoot myself

2.  be miserable and make everyone else around me miserable

3.  get on with life, appreciate what I CAN do, and find what is my “new normal”.

 

I choose door number 3, thank you very much.  Not that the other options don’t tempt me at times.  They have.  Sometimes they still do.  But mostly, I choose to enjoy every ability I own……those that were lost and are now regained; those that I never had until getting MS; those that I never lost and continue to enjoy.  Each one is a gift to me.

 

When we think of getting a gift, we usually are happy to have it… happy to take care of, and treasure it.  But when it is our health, and particularly when it is our SELF….. we don’t treasure it.  We don’t take care of it.  Until it is gone.  Or damaged in some way.  Even when damaged temporarily.. a broken arm, a simple surgery… those things don’t make us really treasure the gift of self.  The gift of health.  We get on with life without much thought of what it would be like if those changes were permanent, rather than temporary.  We forget too soon.   Why is that?  Are we just THAT lazy and complacent.   Or… are we that selfish?  (selfishness is a whole topic I will address later)

 

By thinking of my abilities as gifts, something to cherish….. it is easier for me to stay positive, and deal with the challenges that present themselves daily.  It can be a roller coaster, but we do what we have to do to survive.  I just choose to do it the way that works best for me and my body.  Is that selfish?  There is a question for you to think about.  My friend is struggling with this very issue.

 

 

INVISIBILITY:

 

For sure, we don’t think of how others feel when they are incapacited or have chronic, serious health problems.  The healthy general public sees the disabled as invisible.

 

Let me tell you a story…

 

When in a wheelchair 17 years ago, my son took me to a large Dept. store.  The clothes racks were very close together, and it was difficult to get down an aisle or between racks to see the dresses I wanted to try on.  I finally chose several, and Neil pushed me to the dressing room.  I asked for a chair or bench in the dressing room.  I needed to sit to change clothes.  They didn’t have one.  I asked for the Manager.  He also told me they didn’t have a chair.  I asked if he had an office.  Yes.  Good, then get me YOUR chair so I can sit and try these clothes on, and spend money in YOUR store.  No, can’t do that.  Fine, give me the president of the company’s name and phone number.  Neil and I left; I went home and called the president.  They promised that the problem would be fixed.  They sent me a gift certificate.  I returned to try on dresses several weeks later.  STILL NO CHAIR in the dressing room.   How could I use that gift certificate?  Hell, why would I want to use it?  I never did.  I still boycott the store.  And most my friends in Charlotte, NC do too!

 

The real problem??  I was invisible.  I didn’t count.  I didn’t matter. 

 

And I bet you are guilty too.  We all are.  You see someone me in a wheelchair, or with a cane, or walker.  You see someone different, bandaged, gimpy…. Whatever.  You look the other way.  Almost always.  If I look at you, you look the other way.  Why?  Because you don’t know what to say or do?   WE ARE PEOPLE TOO.  We want you to see us.  We want to be heard.  We want to count.  We want to matter.  We want visibibility.   I WANT what you have….. and will never have.  Because I don’t have enough spoons.

 

When you ignore me….. when you look at me with those hang dog eyes with pity….. I want to shake my fist at you, cuss you, tell you just because I fricken have only 3 spoons left for the day doesn’t me I don’t have feelings!  It doesn’t mean I don’t have a brain.  Hey!  Look at me when I’m talking to you!  Yeah YOU!  I’m talking to you.  Quit ignoring me.  I count in this world.  But I don’t do any of that.  Frankly, I don’t have the spoons to do so.

 

 

Next time you look at me, at least give me the courtesy of a smile.  Or a nod of your head.  Acknowledge my presence and existence.  Make me feel like I matter.  It won’t cost you anything.  And it will make both of us feel good.

 

 ————– working on chapter 2——————–

feel free to leave a comment, question or whatever.  discussion is a good thing, no? 

 

Another postcard arrived this week.

hpim1835.jpg

This one is from Shelly, whose May birthstone is an Emerald.  I will quote her:  “I will never forget being a young girl and listening to The Wizard of Oz on records.  I loved the part about the Emerald City.  Imagine that, a city just for me…and all the other people with May birthdays.  I was so sad when I realized it was just the green glasses.”

This is my new favorite card!

 

Spoons: the assignment

The “Spoon Theory” has been on my mind all week.  I havent yet been able to write about it, because I have SO much to say.

If you have a chronic illness, know someone who does, or you are the caregiver, spouse or parent to someone who does, I encourage you to read the Spoon Theory here.

Since that includes EVERYONE… please come prepared to discuss it!  Your homework is to read the theory and think about it.

It would just be easier if you knew what I was talking about without me trying to explain what she says so perfectly.

I promise….. the Spoon Theory is profound.  It tells you better than I ever could what every day of my life is like.  Not for the same reason (I have MS, not Lupus) but in many of the same ways.  And if you are fighting depression, are recovering from surgery, have a chronic illness of any sort…. this piece will speak to you.

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