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.  😁