Category Archives: MY LIFE AND WELCOME TO IT

Saving My Mailman One Good Deed At A Time

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I don’t wish to brag, but I did a very selfless act this morning.  In doing so, I expect I saved the very life of my rural mailman.

Before I humbly re-enact my heroic deed, I should explain how rural mail carriers are a whole different breed than your basic urban carrier.  Besides having to have cars with either the steering wheel on the right-side (which I know for my British readers, that is normal) or having to have a really long left leg and arm, so you can sit on the right side and still drive and work the gas/brake pedals, they also very often deliver packages deemed “not worthy of our time but we will still charge you an exorbitant amount of money to send it using our UPS rates” by other carriers.

In the past I have lauded the generosity and bravery and long-sufferingness of my mail guy, Tom.  A real rural hoarder’s, I mean collector’s, friend is old Tom.  I wonder how many strange packages he has delivered to my house over the years?  Remember the time I ordered a full-size saddle from EBay and it was delivered via the USPS shrink-wrapped in black plastic bags and poor Tom had to drive up to my house and honk (that is the way we do it around here, or I should say, the way TOM does it….I think it is a kindness on his part and not part of the Mail Carriers Oath….”neither snow, nor rain, nor huge dogs, rouge pigs or wild goats, shall keep us from our appointed rounds” (extremely paraphrased by author)).

So getting back to my tale of heroism….this morning at the butt-crack of dawn (9am), as I am just getting to sleep (caught some kind of bug and have not slept in three nights or days….more or less) out in my camper (tent bed, AC, medicinal hidden BlackBerry Brandy, no bugs or snakes), I hear the roar of Tom’s old car coming into the driveway and the melodic honk of his horn.  I am expecting some things via some kind of carrier so I think about jumping (hahaha…I kill myself….me jumping out of bed….a slow roll is more like it) out of my squooshy bed and since I cannot sleep in normal bedtime attire, I have just a t-shirt on and by the time I get into my lovely Lularoe leggings and a normal shirt plus my “when can I get out of this damn”  Playtex torture device, he will be home having dinner so my initial thought is to just go flying out wrapped up in my fake Muppet fur pink blanket.  Now here comes the heroic part:

I saved Tom the wonder carrier, the shock of his life by NOT flinging my ever so large, wrapped up in yards of long furry pink blanket body with dark blue-standing straight up from my head like some kind of Roman soldier helmet-hair, bare hairy legs and too big for me but work ok running (again….hahaha…running) to and fro the camper, red Crocs.  The poor man would have screamed like a little girl and hit the gas and probably ran smack dab into Scott’s large, but sunk once when he forgot to put a plug back in the engine when he was fixing it at the marina, fishing boat that has resided IN FRONT of the door to the garage all summer.

So, you see, my friends, not all heroes live in Texas….some of us live in the woods of northern Minnesota, saving one mailman at a time…..

You’re welcome,

The Queen (who really needs her own cartoon show or sitcom….just sayin…)

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Why Am I Hearing Voices….Or Am I?

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Most of you know I am a horror film buff.

IMG_1744Which is so weird since I was afraid of EVERYTHING growing up and into adulthood. I had a startle-reflex that was always on HIGH ALERT.  My husband used to torment me by poking his head over the shower curtain even after I had locked the bathroom door (never marry a man who can pick a lock).  And I was terrified of the dark and living out in the woods where there are no street lights, etc. when it was dark, it was BLACK.

 

But then I started taking drugs for high blood pressure which slows my heartbeat (and my metabolism and I have gained 50 pounds) and a drug for panic disorder which also has totally made me a semi-non-feeling person and now I even take an anti-anxiety drug to help me sleep at night so I guess you can say I am in a state of “mellowness” most of the time. (But trust me, it is not a good mellowness….more of a state of “grayness of feeling”….no highs, no lows…just a nothingness….but that is a topic of another post).  So most of my fears are gone….

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So I watch these movies in the dark, by myself, and it used to be that my husband was gone overnight and that made watching them even more “delicious”.   And rarely, do any of them frighten me.  But I will not normally sleep with an arm or leg off the bed….for two reasons….one: everyone knows that if you hang something off the bed something evil will grab it….but since I either sleep on a blow up bed that has no “underneath” or in my camper on the dinette set where you would have to be a tiny creature to fit under there (and when I sleep in my tent bed, then I zip myself in and nothing can get to me!!!!) I really should not worry about that.  Second reason:  my dog has been known to sneak into our room and touch my hand or leg, whichever has accidentally roamed off the safety of the bed, which causes me to have a nanosecond dream that something is touching my hand and I wake up with a scream (which may or may not come out of my mouth….ever dreamt you were screaming but nothing was coming out????)

Anyway, yesterday morning I was sleeping in our bedroom (moved my bed from the basement bedroom back into our room for the summer since I usually sleep in my camper all summer) and I heard little kid voices.  Now, it was not my usual crack of dawn 10am wake up, but much earlier and I could not understand why I would hear kids voices since there are very few children on my road and none of my windows were open.  I usually wear earplugs when I sleep and I have noticed that occasionally I will hear someone call my name or my dog bark or yap and when I take out my earplugs, I realized that the voice or sound was in my head…..(cue the Twilight Zone music) so I had wondered if that were the case.  Then I heard it again and I was fully awake and had no earplugs in so I got up and looked outside and there were no kids in my yard or at the door (I thought maybe my daughter had dropped by unannounced and they were in the front porch….highly unlikely….but it kinda did sound like my grands) so I just went about my business and grabbed a cup of coffee and sat down in the living room to check up on what everyone was doing on FaceBook.  I am sitting there, in the quiet, when all of a sudden I hear “whispering”….and I can tell you my heart started to beat a little harder.  What on earth is going on?  And my imagination jumps to all the movies where the doomed people start hearing voices…..and then it happens again followed by my grandson’s voice from when he was much younger saying, “M is for missing you when you are gone”!

I don’t mind sharing with you all that I was now freaking out.  WHERE AM I GOING AND WHY IS MY GRANDSON TELLING ME THIS??????  Then I hear the whispers again, and my grandson repeating his forewarning.  I am wracking my brain as to what my daughter could have used to record this and was it meant for my husband as he was gone for a couple of days and we had stopped to see the grands before he left and how on earth did she get it to my house since I had not left it.

Finally it hits me!  A few years ago, I had given my daughter a book for her to record Jack and Lola’s voices reading a story about loving their grandmother and a few days prior, I had taken it out of my curio cabinet for the kids to listen to and when I put it back, I stood it upright and the vibration of people walking by the cabinet must have opened the book to a page and it must be so sensitive to movement that it would go off periodically (I have puzzles and other toys that go off randomly….geez….it never occurred to me till right now….is it really RANDOM????  Cue scary music…..). And the whispering I heard was my daughter telling the kids what to say since they were both way too young to read.

Now, I ask you….what would you have thought had this happened to you?????   And do you sleep with an arm or leg over the bed?????

Inquiring Elvira Queens want to know……

Help…My Bed Tried To Kill Me

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I sleep on a twin size blow up bed.  With a one-inch foam pad on top.  I sleep on it because it seems to not be as hard on my body as a regular bed.  I love my bed.  It has three levels of comfort and it will re-inflate all by itself if your “level” gets low.  I have had this bed for a year or so and never had a single bit of trouble with it….until a few days ago.

I woke up the other morning to the sound of the motor inflating the bed….while I was still in it which had never happened before.  Now these beds, as good as they are are not made for every night sleeping on.  So eventually they spring a leak, and since this wasn’t my first rodeo with a blow up bed, I knew it would just a matter of time before it started to leak.  And sure enough, the past few mornings the inflator was running but I was in a low spot in the middle of the bed.  Now if I were a “nip the problem in the bud immediately” kind of person, I would have gotten a bottle of soapy water and sprayed it down to see if I could find the leak.  But you all know me….Procrastination is my middle name.  Plus, I have a tent on top of my bed…..

A what?  A tent.

Since moving into my own bedwomb in the basement (it used to be our daughter’s room), I needed something to protect me from the occasional large spider and or centipede that would freak my kid out when she slept down there…I always knew when she saw one cause I would hear a short, shrill scream and then a “bang” as she whacked it with something large.  And if we have mice, they like to run across the window sills and the floors and anywhere else they feel like going and pooping.  So I bought a bed tent!

img_1146InflatI adore my tent bed.  I keep it zipped up at all time so nothing can get in there and I sleep like a baby in the womb.  It has screened windows on either end so I keep them open for ventilation and even though it is super cold down there (cement floors), I stay toasty warm in there.

So there I was, last night in pitch blackness, sound asleep when suddenly I am falling out of bed INSIDE my zippered tent.  At first I wasn’t sure if it was one of those dreams where you feel like you are falling only to jerk yourself awake.  But then I hit the freezing floor and I knew I was awake.  It took me a few seconds to understand what the heck had happened as it was pitch black and I was understandably discombobulated.  And as fate would have it, I was lying on the zipper part and the foam piece that I sleep on inside the tent was vertical to me and I was still tangled up in my flannel sheet and two blankets.  And I had to pee.  Seriously had to pee.

I quickly raced through my options.  I could try to call out to my husband who is upstairs sleeping but I had heard him up and about earlier and so I really hated to wake him up since he needs his sleep plus I had neglected to bring down my Jammies and so I was just in my Lady Jockeys and even though we have been married almost 33 years, I didn’t feel that being woken up and having to see your wife trapped in a giant pink tent on it’s side, wrapped up like some kind of blanket burrito with her old lady ta-tas every which way but pert, was really gonna add the right kind of spark to our marriage.   By now between the icy cold floor and a bladder that must have moved down after my hysterectomy, there is a much more dire situation taking place.  If you know what I mean…..

My only hope was to try to fling my burrito body up to the other side of the tent to where the other zipper is before I drowned in my own bodily fluid.  Two tries and I was up and like an oversized elephant seal, I maneuvered my encased body to find the zipper.  Now mind you, this is all in the dark.  When I fell off the bed, my tent hit my bench which had my cell phone on it and it was buried under the tent so there was no way to get at it.   I quickly unzipped the tent flap and rolled out onto the floor.  I struggled to get out of the blanket tomb and raced upstairs to the loo.  Ta-tas flying all akimbo, not worrying if the neighbors could see me since I have no curtains on the windows next to the stairs and I leave my “Christmas” lights on so if I have to come up at night, I can see my way.  I had one thought and one thought only.  GET TO THE TOILET.

As it turned out, I woke up my husband anyway as I was getting another pair of Lady Jockeys from the drawers.  When he asked me what I was doing, and I told him I had fallen out of bed and been trapped, he nonchalantly asked if I was okay and did I want to crawl in with him and the dog.  After 33 of marriage, he no longer is surprised by what happens to me.  I am not sure if that is a good thing or not.

So now I am bedless until my new bed comes from Amazon.  I think I will skip the self-inflation, three settings, bed and just get a cheaper one since I now know that I will need a new one next year anyway.  And I probably will have a story to go along with the demise of that one….

Off to order my new bed,

Your deflated, but still alive Queen

Fashion Platter

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Gilda Radner said, “I base most of my fashion taste on what doesn’t itch”.

I base my fashion taste on what doesn’t itch; what will fit; what it costs; is it black; does it fit my fashion “personality”;  and do I really need it.

This is a shot of my closet (that I share with my husband) and no, it doesn’t have a door on it.  I had wanted hippy beads or something like that hanging from the doorway but past experience has taught me that if something gets in the way of my husband or he finds it a pain to deal with, it will be gone in a flash and I did not want to spend hours on my knees trying to locate every last hippy bead that was rolling around my bedroom floor because experience has also taught me if I leave or drop something, my hubs is sure to step on it or sit on it or in some way injure himself on it.  So I left it alone (sometimes I do have a drop of common sense).

img_1165First thing you will notice is most of my clothing is black.  I love black.  It goes with everything including my ever-changing hair colors.  It is supposed to be slimming but once you get to my size, there is no color, fabric or print that can hide this chunkitude.

Did you know that there are different hues of black?  And of course, the more you wash something black, the “browner” it gets.  So having all black clothing isn’t as easy as just throwing two black pieces together.  The hues must match or it throws off the feng shui of your outfit and it will cause people to look at you and wonder “what’s wrong with this picture”.   That is where my kimonos and tunics and capes/ponchos come in.  My fashion dream is to have a long sleeved, v-necked, spanx-like, catsuit in black and a whole closet full of unusual kimonos and tunics that I would just throw on over the dream catsuit. (For those of you who are picturing Michelle Pfeiffer in her Catwoman suit, that is sort of right, only picture her in a 2x size!).  I could live that fashion dream if only I lived somewhere where the temps never got above 65 degrees, and everywhere I went had AC and I never had another hot flash because you have not lived until you have been in a catsuit and have sweated profusely.  It is not pleasant for the catsuit wearer or for those around the aforementioned person.  Talk about creating your own “personal space”….who-eeee.

So there you have it, folks.  More info on my personal style than you ever wanted to know.

Til the morrow,

I remain your TMI Queen

PUTTING THE HYSTERIA BACK IN HYSTERECTOMY

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Well, I did it.

Had all my lady parts robotically removed on Friday.  Not as bad as having a C-section but other than some horrible kind of fake panties, a toothbrush and toothpaste, I came home less than I went in with!

Unless you can count the pain….I have five stab wounds in my belly which only hurt when I move or breathe or God forbid…sneeze, and some pretty bad cramps that mimic that part of my life where my lady parts still had a purpose and monthly made their usefulness known.

I have pain pills but they don’t seem to help at all and they are not “fun” so why bother taking them since all they will do is make my already backed-up plumbing back up even farther and so if I eat anything there is a good chance it will end up as tasting like “shit” and it will be literal shit!

So I am existing on coffee with flavored creamer which so far has been okay since I am not really hungry and Lord knows I could use some weight loss.  But my top question here is:  How can I make poopy if I don’t eat anything to make poopy?  And eventhough I am taking stool softeners by the handfuls, if there is nothing in there to soften what is going to happen?   Inquiring minds need to know this stuff…..

So, you lucky reader, I am going to take you on my journey to being barren and then you can decide for yourselves if it is a journey you too may want to traverse someday.

I have nothing but accolades for the Day Surgery facility and staff at St. Luke’s.  This was my second time this month that I was treated to their services and both times I have nothing to complain about.  Top-notch.  They even found a Notary for me to sign my Health Care Directive so if something were to have gone wrong, I would have my wishes legal and binding.  I did get a gorgeous fuschia-colored bracelet with the big letters DNR to go along with the bright yellow Fall Risk, and the shocking red neon one that said ALLERGY in addition to the two other bracelets that everyone who came into my presence had to either scan or ask  me my name and date of birth and why I was there.  I felt like a paper-bracelet gypsy queen in a too small hospital gown.

I must look smaller than I am cause they always tell me that the regular-size gown will fit me and sure as heck, it never does and I end up being choked at the neck and having my Khardashian assets hanging out the back.  You would think they would look at my height and weight before laying a gown out.  And you know that info is in your file because no matter what you go in to the doc’s office for, they make you step on the scale.  I am truly convinced the nurses have some sort of financial gain for getting like the most poundage per week to win a pot.  I used to take practically everything off before getting on the scales but nowadays, I keep everything on because when you are my size, a couple of pounds either way sure as heck ain’t gonna matter!

I had to have FOUR iv pokes to get two lines in.  Damn those things hurt.  My first poke resulted in a collapsed vein which felt really weird…like a balloon popped inside my vein and shot air pressure out to my middle finger.  So they had to try again on the same hand….nope….so I get to be poked on my right hand…..third time was supposed to be the charm but….no….so the fourth time the nurse decides not to give me any Lidocaine for the pain and just plunges the needle in and I heard angels singing (or maybe it was me screaming as by now I am hypersensitive to pain).  They must have put the other line in my left hand in while I was doped up cause I certainly don’t remember it going in but I have the bruising and swelling to show for it today.

I had always thought that my right side was a tad bigger than my left side but only noticeable by me until the nurse who was going to put some inflatable things on my legs came in and stood at the end of my bed and pronounced, “Wow, look at her right leg, it is much bigger than her left”!  Well I’ll be sure to be much more self-conscience  about it from now on, thank you very much.

The anesthesiologist came in and proceeded to ask me a bunch of questions and when he got to the one, “Do you get short of breath climbing a flight of stairs?”, I just looked at him square in the eyes and said, “I am one hundred and twenty pounds overweight, what do you think”?   I think he probably checked the YES box on that one!

And because my body seems to be able to foul-up any kind of electrical devices, they could not get a good reading of my blood pressure…I was almost dead according to the levels they were getting on my left arm (which should have been a clue that maybe trying to get an IV line into my left hand wasn’t such a good idea) and so another nurse took it one my right arm and that one was pretty much where my BP usually is but the nurse who was championing for my left side like a rabid Hillary fan, was bound and determined to get a good reading and so she tried it again and the whole cuff blew right off my arm after it had squeezed the crap out of it.  She said she had never seen that happen before….Ya, well that is pretty much the story of my life with anything electronic….I once took down a rotating dental x-ray machine when they were trying to get some full-view x-rays and the machine all of a sudden goes haywire!  I think it must be my secret power?

Finally after two hours of prep and paper work, the fun part starts….I get a “relaxer” shot of something….I love that stuff….but wait a minute….this isn’t my usual high-maker, this is some crap that is making me super dizzy and I do not like it at all.  And to make matters worse, they are now going to be moving me to the OR and I am feeling like I am in the middle of a twister and everything is going around and around .  NOT FUN, NOT FUN……

Oh, and I forgot to mention that I asked for every anti-nausea available just in case,  so they slapped a little “cruise ship” motion-sickness disc on the skin behind my ear and told me that I could leave it on up to three days but WARNING….taking it off could land me in the ER if I should happen to touch the back of it and touch my face.  My pupils would be dilating at different levels and so it would look like I was having a stroke and it would not be a pleasant experience so be careful.  And this thing is stuck to my skin with the killer back side on top of my skin?  What the heck?

And what is with doctor’s coming in to talk to husbands after the surgery to tell them how it went?  Is there a man alive who can relate that really important info back to a woman verbatim?  I realize that I am in no condition to remember where I am let alone what the doc had to say but they should be required to at least put a post-it note on our chest so we can read it for ourselves after we are alert enough not to see Chris Hemsworth standing shirtless in our room…..

I have never been so dry mouthed before in my entire life.  No amount of ice chips or water was touching it.  I had no spit….none….nada….and they kept asking me if I had to go to the bathroom….um, if I have no spit how on earth would I have any pee?  Plus I was cathed during surgery so I was bone-dry.  Had I stayed any longer in the hospital, I would have just dried up into a very large turdless, spittless, peeless, blob right there in my bed.  I did not get any spit back until this morning (Sunday).  That, my friends, is a long time to be left spittless…..try eating something with no saliva….you are headed for some major choking which is something you want to avoid when you have five stab holes in your stomach.

After the surgery, they have you wear these inflatable ankle-to-knee things that take turns cutting on and off your leg circulation and you have to leave them on all night.  Don’t be fooled by how tired you think you are that you will even enjoy a short nap that first night.  I had figured since I had been up since 5am, been put to sleep and had a robot chopping up my lady parts and trying to pull them out of spaces below, and then being inflated and deflated constantly, and having Morphine shots (which only made me envision some really weird stuff, didn’t touch the pain at all) and getting anti-nausea shots, and doses of Percocet (another disappointing drug), I thought I should sleep like a baby…..well I guess I did if that baby was up all night with colic…besides being in pain, those damn inflatables kept me awake because they inflated and deflated in no specific order and half the time, when one would inflate, I would think someone (or something…October is my month to binge on horror films) was grabbing my leg and I would jump and that would cause more pain.  Sometimes I thought it was my stupid dog laying on me….wouldn’t you think after having these on for hours I would have gotten used to it?  They made me get up once to walk the halls and I did ok except by the time we got back to my room my tongue was dragging along the carpet picking up all bits of flotsam and jetsam and my mouth was so dry that ashes were flying out like little specks of non-existing spittle.  I couldn’t swallow because my tongue was stuck to the roof of my mouth and my uvula was stuck to the side of my throat.  It was actually quite terrifying.

I need my sleeping space to be dark, cold and quiet….my room was bright (those dumb computers that are there keep the room bright), I made the nurse turn my room down to frigid and I had brought earplugs but I could still hear noises.  It was one of the longest nights of my life….just looking at the clock, waiting for the time to come when I could get another 600mg of Motrin (worked better that any of the narcotics they were giving me) and for the anti-nausea shot since anyone who has been reading my blog for awhile knows I have a HUGE FEAR of throwing up….so to be nauseous is just about the worst thing that could happen to me!

I must mention the fake underwear they give you to put on….it is like two pieces of a pattern sewed together but unlike any underwear I have ever seen.  I wasn’t quite sure how to put it on plus having been stabbed in your stomach five times, trying to bend to get something on even while sitting on the toilet is not any easy feat.  So I struggled to get them on and the pad that had less stickiness than butter and finally after much pain and agony, I stood up to pull them up and lo and behold they are on backwards so the front came up over my belly to the top of my rib cage and the back barely came up to my crack!  I thought about leaving it just like that but I was afraid that the back would slip down the moment I struggled back into bed and then what would I do, so I sat back down and painfully took them off and put them on the other way only to discover when I stood up to pull them back up they fit the exact same way.  Oh I was mad….all that pain and effort and my backside was still not fully covered and my frontside was up over all my stab wounds…..had I had any moisture in my body I would have attempted to cry but dry crying hurts more than wet crying so I opted to just swear. Swearing is good when you have been stabbed five times in your stomach.  It takes no effort, or spit (I was only swearing in my mind) or causes any pain and you don’t have to worry if it will affect your ability to poop.

I did have one moment of pure joy though.  Yesterday the nurse came in with a shot of an anti-coagulant and had I not had lots of fat under my arms I would have had to have the shot in my belly.  I will never bemoan my fat flaps again.  They now are my heroes because I just don’t think I could have stood one more thing hurting my stomach.

The ride home was also a real joy….I screamed more in pain than when I gave birth.  Every pot hole, every turn, every bounce of my belly made me scream like a girl.  And since Scott had lots on his mind besides me, he would sometimes forget to slow down when going over the bumps until I would scream obscenities that shocked the both of us in not only their volume but their content…..must be a side-effect of the  morphine shots….cause you know I would never do that in real life!

So as of today,  I have eaten a cup of pudding and some pretty bad Kwik Trip cream of potato soup hoping that it will get the ball rolling if you know what I mean….not that I will know the difference in the pain stabs as I am having “phantom period cramps” and so if I get “gotta go….go now….”cramping, I might just miss the opportunity or worse yet, think it is one of those elusive farts I have been trying to squeeze out ad end up with a load of stool softener and bad Kwik Trip potato soup on the couch with me.  Either way tonight is gonna suck…..except for the second episode of the new season of the Walking Dead….that might take my mind off of my troubles for an hour!

So the question I am going to leave you all with is this:  Do I dare take more softeners and Milk of Magnesium or just wait and see if anything develops….(my mom and sister are going to be so embarrassed by this post…that I would give out so much personal information about my bowels and innards…..I have no filter in my writings as most of you know by now….what is really me is what you really read….sorry if I gave TMI.  You may wish to ignore my next post since it will probably have to do with Angels singing and toilets flushing……

Your ever gross Queen,

Robyn

 

 

TIME TO TURN IN MY APRON….

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imageI may have come to the end of my entertaining days.  I just cannot keep my house up enough to not feel bad about the dog-hair-tumbleweeds that seem to accumulate in hidden spots until they hear I am having company and then they scurry out like little mice to take up residence under my furniture and along my walls.  I have no carpet anywhere so they can roam freely and sometimes they hook up with spiders and leave dog-hair-tumbleweed-webs (which from an artist’s stand point they are pretty cool!).

Because I am a chronic procrastinator, I leave everything to the last minute and then I exhaust myself trying to get it all done in a matter of hours while having to take multiple naps.

Today I have taken five naps, cleaned the bathroom (in the most broad terms), made a huge chicken salad, washed three loads of dishes by hand and dried two of them, made myself somewhat presentable (no make-up, no fancy clothing, no jewelry), and now I am waiting for my three or four friends to arrive (one friend is bringing a friend who has never been here before so I will hope she doesn’t have on black pants and socks or she is in for a rude awakening as Madd Maxx’s hair is white with little barbs on the tips so it cannot be removed (Have I mentioned I hate that dog?).

I am one hormone away from crying….I love having people over.  But each time I do, it gets harder and harder on me physically and emotionally (because, damn it, everybody else can keep their house up, why in the hell can’t I?).

I don’t know if I would cut myself some slack no matter what illness I had.  If I was chronically ill with cancer would I hate myself this bad for not keeping my house company clean?  Probably.   This kind of life is getting old.  I am getting old.

I go in Monday for a test to see if perhaps I have endometrial cancer cells.  Half of me hopes so….to just get it over with.  To be done.  To have run my race and to look forward to the finish line.  To finally be at peace with myself.

And if it turns out that it isn’t, then I will start badgering my husband to move to a tiny house with a big garage!  I do not need much space to entertain and that is what makes me happiest…to have friends, family and an ocassional stranger over for conversation and laughter.  If we have to be squished, so be it. At least I could still entertain and not have much to clean except the tiny bathroom!

So we will see what the future brings….I am ready for anything but this life I have now.

With much love and dog-hair-tumbleweed-cobwebs,

The Queen

THE HERSHEY BAR THEORY OF ENERGY

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IF you are lucky (is there an emo for sarcasm?) enough to have a chronic illness then you will understand my Hershey bar theory of energy (clinically known as the Spoon Theory but spoons make me think of ice cream which makes me think of chocolate cake which I have a mix for and am trying so hard not to make until I have company….but I digress).

My Hershey Bar Theory (hereby known as HBT because it will drive me crazy to have to type the whole name out….) is very simple to understand.

Imagine a world where when people wake up, they are given an eight-piece bar of chocolate to use for the day for energy.  Without this chocolate bar, they would be bedridden and have zero energy.  You are free to use as much as you want of it but it does not carry over to the next day.

So to get out of bed and get moving for the morning you take a quarter of one piece and you are good to go until you get to work where you take another half of that first piece and by noon you need the last piece of the first piece.  You still have seven full pieces left to get you through you day.  About 1:00 you decide you really need some energy to help get you through the rest of your work day so you eat a full piece of your chocolate bar.  Still have six pieces left and it is now 5pm and you want to stop at the gym on the way home and so you eat another full piece….still feel great at 6:30pm and decide to go out to dinner with friends (or for most of us, make dinner for the family) so you eat another half piece of your daily energy bar.  Now it is 8pm and you still have 3 hours left in your day so you nibble the other half of your 4th piece of energy.

Bedtime comes and look at that, you have only used up 4 of your 8 pieces of energy and you are tired enough to go to bed and get a good night’s sleep and wake up refreshed and ready for the day with your new 8 piece energy bar.   Of course, some days you might eat most of your bar or eat less than your “normal” 4 piece day but unless you have a super active busy day you never run out of chocolate pieces.

Now, let me explain how someone with a chronic illness uses their bars.

We wake up and first thing we need to do is eat a full piece of our bar just to get out of bed because unlike most people we have not had a restful night’s sleep so we are energy depleted upon waking.  Now comes the huge decision of taking a shower/bath which will use up one to two full pieces of our energy bars.  So we decide to just wash up which just uses half to three quarters of a piece.  If you have any kind of hair style that is more than just a quick comb thru, then you use up that last part of your second bar or more if you have to curl/straighten it and we are talking a full bar if you need to wash it first.

So, we have gotten out of bed (1 bar), cleaned up (1-2 bars) and now we need to get dressed.  If it is just a stay at home, not gonna see anyone kind of day, then it will be only a half-bar requirement but if we have to go somewhere and look presentable then we are a full 1 and a half or two bars…more if ironing is involved.

So it is now 8am and we have already spent anywhere between 2-5 bars of our daily allotment of 8.

Now this is just for a person who has no one else to care for but herself, you add a husband and children to this and it is possible that by the time the kids are off to school and hubs is gone, she is down to 2 pieces or less and it is only 9am.

If that person has to go to work as most of us do (I am blessed to not have to work outside my home at this moment of my life but when I did, it was so, so hard), then they use up another quarter or half just getting to their job, more if public transportation or driving a long distance is involved or bad weather.  So by the time they get to their job, they have only 1 or 1 and a half pieces of energy left for the next 12 hours.

Most chronically ill people are completely WIPED OUT by 3pm.  I am talking complete exhaustion not unlike the tiredness that you feel when you have the influenza.  Talking is difficult.  Thinking is difficult.  Moving is almost beyond our ability at this point.  And yet many, many folks have to go home to do more “work” and to try to be loving and caring and interactive with family members who just cannot understand how someone can be so tired so early in the evening.

Unless you live it you truly cannot understand the pain that living this way entails.  Not only the physical pain but the emotional pain of being thought of as lazy, unmotivated, depressed, anti-social, angry, not a good spouse, mother, child, friend, sibling, Christian, employee.  How humiliated we get when we have to cancel yet again another date/get-together/etc and worry that people will stop inviting us to things because we “never show up” anyway.   I have heard it all and have berated myself more and harder than anyone else possibly could.   I KNOW I disappoint friends and family by not showing up.  More than likely, I am home hating myself for being so “weak willed” that I can’t muster up the energy needed to get there.  I HATE not being able to be reliable.  I HATE not being able to celebrate weddings and showers and to be able to go to candle parties and neighborhood pot lucks and girl’s night out.  And I think the worst is not being able to go to funerals of friend’s parents or spouses (or God forbid, their children).  I agonize over what “they must be thinking” that I didn’t care enough to come.   I CARE but I have used up every last crumb of my energy bar even if it might be only 10am.

So if you have lasted this long in this post, please, please, please remember the HBT the next time I or someone else who is ill, cancels on you or disappoints you by not showing up or by not following through with some plans.  We dream of someday being “the life of the party” (ok, most of us would like to just be able to show up and sit in a corner and just watch).  We dream of being like we “used” to be.

The bald-face reality for most of us is, tho, that THIS OUR LIFE.  This is our normal…there will be no going back to the days where we took our energy for granted, to a life that didn’t revolve around how many chocolate energy pieces will used to just bare-bones function.  This is who we are today, in the bodies we have now but the person inside has not changed.  We still laugh, love, care, cry, enjoy the things we can do.

But for us, all those things use more of our energy pieces than for you.  An unexpected energy burst can be so wonderful but comes at a huge cost.  It’s like when you are a kid and you get to eat all your holiday candy in one day…it’s great for that day but you suffer for it for days afterward.  It’s like someone offered us a full three days worth of energy bars and we gobble them down hoping that somehow those bars will reappear as the week goes on but of course, they never do and so we crash…..hard….just breathing is eating away at our meager allotment of pieces.  Sometimes it takes a week or better to get back to “normal” all because we squeezed every drop of energy out of those unexpected bars and our bodies are not used to that much movement and so by overusing those muscles on our “energy” day/s, we have set ourselves up for a world of hurt.  And more than likely we never got to finish whatever we started cause there is so much that we have not been able to do that we are starting here and running there and doing this and doing that.  Then the crash hits and all those half-done projects are left sitting there….staring us in the face…mocking us…physical evidence of our LACK.  It will take us days/weeks just to put away everything that got left out during the exhilarating moments of energy.

And I do mean exhilarating….it’s akin to drinking fresh pure water when you are so thirsty that your uvula is sticking to the side of your throat (I have been that thirsty….).  You are giddy with the promise of actually being able to do something without a heaviness weighing you down.  Where to start?  Do I do mundane household chores that are desperately needing to be done or do I create with abandon.  For me, rearranging rooms gets both things done.  I move furniture, I vacuum, I mop, I dust, I paint, I sew, I scream with joy at the things I am working on, the energy that is in me….I am invincible….well at least until 9pm when I finally stop and realize that I can barely stand up straight as my back is killing me and I am walking on someone else’s feet as they are too big for my slippers and they are throbbing but my mind is still racing….more colors, more lights, more, more, more…..get more done.  Take mega dose of painkillers and try to sleep.  Not gonna happen….mind is still moving….do this, do that, get up, get up….but my body is saying, “Move out of this bed fat girl and you will die”, so I lay there thinking about businesses that I could start….crafts that I could make, ideas fly like mad inside my brain…..you can do it, you are awesome, you are a creative machine….on and on it goes until finally as the clock strikes 6am, I fall into a restless sleep for three hours and then I am up again…..not quite as energetic as the day before and I need more painkillers to start the day but I still feel encouraged…..more painting….more ideas….more furniture moving…..don’t sit down as that might break the “spell”…..move, move, move….start another project….maybe I should finish the ones I am only half-way done doing…..no, there will be plenty of time later…..more projects…..this time it is only 4pm when I crash….body killing me…..the house a total chaotic wreck….nothing finished….paints all over, vacuum in middle of floor, mop out, junk piled up everywhere….but tomorrow is another day….I will get everything finished and in it’s right place tomorrow…..have to take sleeping pill to sleep plus more painkillers.  Grandiose dreams are gone.  I am not quite so awesome.  Business ideas will have to wait…

Wake up the next day with a lot less energy.  Maybe I need to sleep more.  But I know that if I go back to sleep I will have tons of “adventure/horror” dreams and so I will not feel more rested by staying in bed.  Hobble to kitchen for coffee and then to Lazy Arse Chair where I spend two hours looking at FB and my mail.  Better have some breakfast before starting the PROJECTS….might as well go straight to lunch as it is almost noon so I have some carbs which bring on a bucket of tiredness so I lay down for “just an hour” and after a restless pre-nap realm, I fall asleep for three hours and wake about 4pm.  Nothing has gotten done.

Thus begins the pattern for the next few weeks….and that is my life…that is my normal…..that is my millstone….pity me not….it could be a lot worse and I am so grateful for the health I have and the wonderful friends who have stuck by me and still like me and for my long-suffering family who by osmosis have endured this battle with me even though they still sometimes don’t quite get it but love me anyway.

Thank you for reading this….not only so you can understand me a tad bit better but for all of my “peeps” who share in this life of  The Hershey Bar Theory….may our energy bars last all day!

Love,

The Queen of Many Words