Voices Carry

Except that they don't.  At least that's what I'm finding about the caregivers of people with chronic illnesses.  

Chronic illnesses are often invisible illnesses.  There are typically no outward signs of Lupus, Fibromyalgia, Chronic Pain/Fatigue Syndrome, Dimentia, HIV/AIDS, etc.   Our Spoonie friends and family generally don't look sick.  As anyone who struggles with a chronic illness can tell you, they are sick, and they do need help.  That's where we come in->the caregivers. 

Caregivers of Spoonies are loved ones, friends, or family members that help out and pick up the slack when our person runs out of spoons.  That could be anything from an encouraging word or understanding ear, to washing the dishes, running errands, and babysitting.  By 'slack' I don't mean that our friends are slackers.  If anything, they truly wish they were able to do things for themselves. The one thing I hear constantly from my Spoonie is "I'm sorry (I didn't finish the laundry; I slept all day; the trash needs to go out; I didn't get to the store)." 

In those cases, it's up to the caregiver to step in and get it done.  Generally, not a big deal.  However, combine that with everything else you normally do and it may seem a bit stressful.  Especially if there's a bad flair up which goes on for an extended period of time.  My Spoonie's way of dealing with things like this is mainly talk therapy.  Sure, he occasionally sees a therapist (when he's felling well-she's actually taken to calling him at home for sessions), but his main talk therapist is me.  His Significant Other.  

As his SO, not only do I get to do my stuff, I get to do his stuff from time to time, and I get to listen to every infinitesimal thing that is bothering him.  He's also a bit of a narcissist, so virtually everyone/everything that isn't like him bothers him.  He got mad at me one day and wanted to know why I never ask how he's doing.  I shot back with, "I never ask, because you always tell me. I never have to wonder." 

I'm getting to the point.  Hang on. 

Because the stigma is slowly being lifted, people with chronic illnesses are more open to talking about their condition, what's wrong, and how it's affecting them.  Before, the standard answer was, "I'm fine." Now we have websites and social media accounts specifically for these issues.  I've read articles like What Spoonies Wish You Knew and Ways to Know You're a Spoonie.  It's a wonderful thing and should be talked about without humiliation.

But what I'm not seeing is what it's like for the caregivers.  

That's my point.

When I bring this up, I hear nothing back.  If I ask a question in a FB group, the only response I get is from Spoonies, not caregivers.  When I opened my own FB group, people thought is was for Spoonies.  I've asked questions on other FB groups and could hear a pin drop.  Why don't the caregivers want to speak up? 

As the spouse of a Spoonie, I know it's difficult. I know how tough it is.  I GET IT.  What I want to know is do others get it?  Am I the only one who feels like they're running out of spoons, also?  

No one will admit it.  No one will say that they are tired: tired of doing more than their share; tired of dealing with other people's problems in addition to (or in place of) their own; tired of what seems to be the SSDD.  Why?  Are not everyone's issues important?

Maybe it's guilt.  Caregivers usually are not dealing with pain, fatigue, depression, etc., so perhaps it's the remorse of complaining about your own problems when someone you love is suffering worse.  Or seemingly worse.

Maybe it's shame.  Are caregivers ashamed of their workload?  Are they ashamed of their Spoonie?  Are they concerned by what others might think about the situation?

Maybe they're so used to just plowing through (suck it up and move on, as I say) that they don't think about it.  Is it easier not to think about it?  Just push it down and ignore?  

Speak up! It's OK to be any or all of the following: mad, furious, sad, despondent, confused, lacking, annoyed, irritated, tired, exhausted, fed up, alone, not understood.

Caregiver mental health is important, too.  We need breaks, naps, food, meds, space, the occasional tequila shot, water, massages, therapy, shouting, yoga, prayer, and love.  If we don't allow for this, we may end up like our Spoonie brethren and then who would take care of us?  Self-care is not selfish.  

Breathe in.....breathe out. 

Why Don't You Go Live on Hoth, You Freak!

I really have nothing to post about this week, except how %&Y@@*#^)$ COLD it is in this school.  

The county controls the heat/air from a central location, and it's on a schedule.  On Date A the air is turned on and on Date B the heat switch is flipped.  There is no controlling the air temp in the individual classroom.  When it's very hot, we can't adjust the temp accordingly, and when it's freezing the nipples off a dog, we can't turn the heat on yet.  

"They" say the heat switch will be flipped on Monday.  Until then, we're bundled up because the AIR CONDITIONERS ARE STILL RUNNING.  When I print to the desktop printer in my room, steam comes off the papers as they come out.  I'm thinking of crawling inside the printer like a Tauntaun.  I realize this is a first world problem, but right now it's irritating.  For now I'm going to make a cup of coffee and hope to get lukewarm.  Get it?

Lovin' Spoonful

I had originally planned to write about the sadness and irritation I felt on Monday, October 8 as Phil Collins' last concert tour rolled through Philly without me.  I intended 100% to purchase tickets to this event as Phil Collins, to me, is god-like.  I just love him.  Love Genesis.  Love Peter Gabriel.  You get it. I didn't buy those tix because the day they went on sale was the day I was told I was being recommended for termination.  Termination from a job I'd had for 17 years.  I'd not felt the need to buy those tix as I was in full panic mode then subsequently experienced the multiple stages of grief; the anger and depression stages hitting me the hardest.

I put off this week's blog because honestly I'd forgotten to do it Tuesday and then Wednesday all hell broke lose at work and I was so pissed I couldn't think that night.  Thursday night the Eagles were on and I can't watch the game and think coherently at the same time, so now here we are...Friday afternoon...with three minutes of teacher planning left.  I should probably pee while I have the chance.

And now it's Monday night. Where does the time go?

I was then going to write this post about what a crappy day this past Wednesday was.  Actually, I did.  I spent a good chunk of time on it and when I went to hit Publish, it was gone.  Poof.  Maybe I wasn't meant to bitch and complain about how nobody seems to be doing their job, and how that is making it difficult for my husband and I.  But I digress.

Instead I've decided to write a post about something that has nothing to do with school.  I'd like to take a minute (or 5) to talk about Spoonies.  Spoonies are not things you eat soupies with, BTW.

Spoon Theory was coined by Christine Miserandino to describe the difficulties of living every day with a debilitating illness.  Please take the time to read this article.  It'll take just two minutes.  I'll wait.

OK.  So being a spoonie is tough.  It sucks because it stems from one of those invisible illnesses.  For spoonies, the phrase "but you don't look sick" is debilitating in itself.  Stop saying that to people.

Our spoonie brethren are exhausted, hurting, lonely, angry, depressed, anxious, guilt-ridden, sad, and generally overwhelmed.  They feel like no one understands.  They feel like their concerns are being ignored because others can't see what's wrong with them.  If there's no outward indications that a problem is occurring, then there's nothing wrong.  Right? 

If they're lucky to have someone, spoonies can count on relatives and friends to help them out.  The caregiver is there for physical and emotional support, running errands, providing a listening ear, offering suggestions/solutions, completing chores, giving reassurances, etc. That said, being a spoonie caregiver can be difficult as well.  As with any illness, whether it be cancer, fibromyalgia, MS, or any number of diseases, the caregiver is responsible for many additional duties.  Often this is done out of love; sometimes it's done out of necessity.

Sometimes, the caregivers get to a point that they need help themselves.  They need a break from the day-to-day caring for their loved one.  Quite often, they're in it alone.  Others think, "Oh him?  He looks fine. He's just milking it so she'll wait on him."  "There's nothing wrong with her.  She was at the mall last week walking around for an hour."  This leads to little to no offers to help out, and no one for the caregiver to turn to when in need.

I live with a spoonie.  Luckily, it's not drastic and most days are good.  I know others have it way worse than I have it. There are days, however, when I never see him because he's in bed...still...when I've been at work all day...and the dishes aren't done...and I have work I brought home to do...and the trash has to go out...and the cat threw up on the carpet...I should stop now.  I've spent a lot of time alone.  I've gone to family functions (including Thanksgiving at his sister's house) without him.  I've missed parties, concerts, games.  We can't make plans for anything because he never knows how he's going to feel.  There are chores around the house that either don't get done, or get put off for weeks, months, and years.   We don't go on vacation. Spoonies and their caregivers learn to live with all this.  But man, sometimes it makes me want to scream. 

But I don't.

I can't scream for several reasons.  1. He can't take loud noises.  2. It's not fair to him~he already feels guilty enough for something he has no control over.  3. I'm too tired to scream.  4. It's easier to suck it up and move on.  5. No one other than another spoonie caregiver could understand.  I went looking for spoonie support groups.  Couldn't find one.  Edit: I couldn't find one that met my needs.  So I'm starting my own.

I've never created a Facebook group, or any group for that matter. Neither am I one to talk about, or display, my emotions.  Ask my mother.  "Everything's fine."   I thought, though, multiple people could use this as an outlet and maybe connect with others in the same situation.  Remember, there's strength in numbers.

Here's the deal. This is going to be a group where spoonie caregivers can share, commiserate, bitch, moan, and complain.  We need to be able to support each other in a non-judgemental setting.  It's OK if you feel overwhelmed. Tell us.  It's OK if you have questions about where to go for specific illnesses, treatments others have tried, or websites to research.  Ask us.  It's OK if you woke up at 2:00 in the morning on a random Tuesday crying because you just want to scream your head off in frustration.  Put that caps lock on and let loose.  Judgement-free zone.  

Here's the page:  Spoonie Significant Others https://www.facebook.com/groups/998290870355530/

Come check it out.  It just went live.  Thank you.  😁

They do exist!

I can't believe it.  We're a little over a month into the year.  I'd convinced myself this would never happen.  They all told me it would never happen.  Couldn't possibly happen without an act of God.  That kid..you know him...all teachers have had him (or her) a few times...that kid----------was absent.
*cue angelic hosts singing Hallelujah

We had the best day of this year so far.  My other student with behavior issues had a near-perfect day.  Kid 1 wasn't there for him to be a distraction and partner in crime.  We had a calm, quiet, fun day.  I felt like a real teacher today, actually getting students caught up on curriculum and taking some grades as well.  I was a teacher, not a babysitter.

It's amazing how one student can cause so much disruption.  One student's words, sounds, actions, attitude, effort, noise can cause such upheaval.  I'm either trying to deal with him and his behaviors and ignoring the rest of the class, or I'm giving him work to do on his own-basically teaching himself-and trying to teach the others.

Academically, he's fine.  He's on grade-level and may even be slightly above in some areas.  It's only his behavior that keeps him in my classroom.  Any time he's in trouble, it's always the adult's fault.  We're racists and liars.  We're trying to get him into trouble.  We call him names.  We talk about him.  I know we can't say this to the parents, but if this kid was even just slightly medicated he'd be able to be successful in the regular ed setting.

The Powers That Be tell me I'm doing a great job with this class.  I feel I'm only doing an OK job.  I still feel like a fish out of water.  Interims are coming up and I know I don't have everything I need. On a good note, I don't need to do IEP interim reports.  First time in 5 or 6 years!  Woo hoo!

Is it wrong to hope that he's out again tomorrow?