Why, Yes! Since You Asked

Something that I’ve noticed when well-intentioned friends and family offer to help “Spoonie” me:

Those offers are more appreciated than you know; the tricky part is the follow through.

I often hear “you never asked!” or “I didn’t know what you needed” or “Wish I could but that day doesn’t work”.

It totally changes the dynamic from someone understanding that you need assistance and making that happen and you being put in the position of asking a favour, two very different things.

Here’s the thing: as a formerly vivacious, uber-capable person, it kills me to ask for help. I never have, not from my parents, not from anyone. My self-esteem as a fully functioning adult is pretty beaten up already.

If you genuinely want to help, having a take charge attitude is incredibly helpful to someone like me. It shows me that you have the time and willingness. It tells me that I’m not cutting in to your personal or family time. It makes me feel that I still have value and am not burdening you.

There are so many things that you can do without being asked that improve quality of life for “Spoonies”:

Offer to help get garbage to the curb

Shovel out a walkway; lend your green thumb for some gardening

Drop off a casserole; send Skip the Dishes gift cards

Help with organizing files, cupboards, closets

Splurge on a house cleaning service gift card, it takes the embarrassment of an untidy out of the mix

Offer to help picking up groceries or shopping or send complimentary Uber / Lyft rides

Splurge on paraffin manicures or pedicures for friends with arthritis or fibro

Doing these things spontaneously, offering them at any time rather waiting to be asked is huge for me. A friend who also understands that sometimes shit just gotta get done and that every visit doesn’t need to be or should be a social event is golden. I want to see you, need to be connected to people who know who I was but every once in a while, if you could throw on a Super Hero cape, that’d be amaze-balls!

No one wants to feel indebted, least of all the people in your life who for whatever reason may not be able to reciprocate in kind. There are so many other things that I or we can still do to enhance or enrich friendships, all you need to do is be there and really mean it.

Xoxo, Karin

~ kei
29 October 2018

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Please Help ~ Awareness Builds Action

Hello WP People,

I’m sorry that this is two ME posts in a row rather than at least a rhyming couplet however, time is running out.

The 25th of March is the submission deadline and I want all my friends, family and colleagues who’ve watched me “disappear” over the last year or two to sign this petition.

Please, help me to help those of us who may be so negatively impacted by Myalgic Encephalomyelitis that they are bed-bound, unable to muster the energy to use a computer. If every one of my followers signed this petition, there would be close to 10,000 voices demanding the end of abusive PACE & GET “therapies”. I do not expect to see a cure in my lifetime but I remain optimistic that there can be medically-sound treatments.

Thank you for helping me have a voice.

~ kei
04 March 2018

Petition To End Abusive Enforced PACE And To Find A Legitimate Treatment For ME

Losing Mysty

~ My house is always a bit untidy since the last incremental encroachment of ME. For the preservation of my formerly stellar domestic goddess rating; my home was once immaculate. The mess is just backstory though, so bear with me ~

I had already been crying off and on for hours. So much that my eyeballs felt bruised and it was a little hard to see. I know that I worried some of my colleagues and I’m a bit sorry about that. Cardinal rule for women in the workforce – never cry. This wasn’t about work or caused by work, so I think it’ll be forgotten and forgiven.

I bolted as soon as the clock on my computer rolled four, running down the stairs and only pausing to put on my sunglasses. More to protect anyone from seeing my eyes than to keep out the sun. Some women have crying down to an art, looking like princesses in need of a tissue. I cry ugly. Wailing and tears and huge hiccups of grief and occasionally snot for good measure.

The walk home was the same, work men still finishing construction, coworkers waving, “Have a good evening, see you tomorrow.” I was different though. My wavering self control started to fray when I passed the guy putting pet food in his trunk just in front of the Pet Smart. The tears started to well immediately and I started walking faster. Gaining the safety of the hilly shortcut up to the back of my twinned apartment buildings, the spillover started.

I kept my head down and a tight rein on the sniffles that kept trying to escape. Straight past the first two cop cars, across the lawn, registered another two cop cars and a policewoman interviewing a woman on the front steps of my building. Apparently, there’d been a stabbing but that’s just a rumour that I heard about two hours later. Nothing really registered.

I made it in my front door, dropped my coat and purse and just stood looking into my apartment living room, where the afternoon sun was streaming in my window, illuminating my lack of vacuuming. Illuminating too, a pearly silver something stuck on the back of my upholstered rocker; one of the few pieces of actual furniture that I have that is from what used to be my home. I stared and stared, with my aching eyes and finally registered what I was seeing. Mysty’s fur. She would rub her face on the corner of my chair, it was My Chair and then sleek down her fur against the same spot. I know I’ve seen it at least once before since I moved here and it only registered in my brain as “How ironic, I brought my dirt from the old homestead” and then was promptly forgotten.

As soon as my brain grasped what I saw, my knees slowly came undone. Reverently and with tears now running slowly down my cheeks, I inched closer and then sat staring at the silvery hairs that once upon a time in a Suzy Homemaker world, I cursed. I reached out my fingertips to stroke the fur and it felt as soft as hers always had. A not quite short-haired, silver shadow tabby. Small and delicate with green eyes in her beautiful heart-shaped face that we joked she got from her Mum. Me.

I broke down utterly. At another time, in another world, she would have come to comfort me. Soft whiskered kisses and gentle head butts – head butts of love – to say it’s okay. It won’t be okay anymore because she was put down at about 1:30pm this afternoon. I wasn’t there, for reasons beyond my control and definitely not my wishes and I was informed by a text after the fact.

She was old, although you’d never know it by her still loving nature and she was ill. thyroid issues, also like her Mum and severe arthritis. In the last couple days, she’d begun the early stages of kidney failure. We didn’t know this until her vet appointment today but it advanced like lightning due her age and already tired body. It was suggested she be put down on the spot as she was clearly suffering and I agree with that decision.

What is breaking my heart is not being able to say goodbye to my baby. To be denied my right to hold her one last time and let her know how much I loved her. I feel like I’ve been robbed of what everyone should be allowed, a loving farewell. There is no real fault, no malice of intent I’m sure. Just a benign indifference because she didn’t live with me anymore. I bought her knowing I had pet allergies but a home without a pet didn’t seem right and I loved her from the moment I saw her at the pet shop. In those days, you could still buy pets at malls. She would always come to the glass when I visited and the first time I held her, I knew she’d be coming home with us. My allergies worsened over the years, Mysty moved out with my daughter and I got to visit. All good.

This should be some sort of educational story. There should be a valuable lesson or brilliantly worded thought in it to make it worthwhile. Do real writers write about their cats? I don’t know – I don’t care. What I do know is that I have lost so much in this last year and that most days I feel transparent as glass and as breakable as crystal. I feel all my old life being blown up, firebombed and sometimes, just slipping away. Do other people have it worse? Maybe. Probably. This isn’t to compare though, it’s not about first world problems or bad decisions and the possible Karma it brings. It’s mostly just that I loved that damn cat from the time she was a baby and through her mischievous, eating my yarn, sleeping on my pillow years. I loved her sweet, friendly, playful nature and how she could be totally undignified like  a kitten. even as an old lady. I don’t want her to be gone. I don’t want to think that she wondered where I was… and that is making me cry again, so I have to wrap this up before I can’t write anymore.

So I sat on my floor crying for an hour and then fell asleep exhausted like babies do and although this wasn’t really about my crappy housekeeping , I’m so damn glad that I didn’t vacuum that little bit of fur because that’s all there is now.
I think I’ll leave it there.

I love you Mysty Gris.

~ kei

2 October 2013

Insomnia

I suffer from insomnia
But it’s really more like
A renegade variant
Of Epstein Barre Virus
Took up squatter’s rights
In my spinal fluid and liked it
But it needed more space and so
It took a sublet in the grey matter
That used to house my serotonin factory
Sometimes my brain rests
In LSD-like visions…

Until insomnia strikes
Not so much insomnia though
As it’s a mumbling male voice
And a rattling the knob of my front door
Causing synapses to warp from fidgety
To holy fuck!
And I leap out of bed like a cat
Well, maybe not exactly like a cat
But I’m wearing a Hello Kitty tee-shirt
My heart is going 90mph
It’s not even a weekend for christ’s sake…

As I move stealthily toward the door
But in reality, moving like a frightened mouse
I want more than anything to be wearing
My cloak of invincibility
Which was really just an old shirt of my Daddy’s
I used to wear those when I was unbreakable
That time when some strange guy came knocking
And It was just my sisters and me
‘Cause my Brother was still just a twinkle in my Mumma’s Eye
And I grabbed my Dad’s 303 because I knew
That I could handle anything back then
I had my Superman shirt on, you see?

I’m pretty sure that this Hello Kitty shirt
Doesn’t have that kind of magic in its fibres
And all I want right now is my Daddy
Or some kind of magic, any kind at all
Because I’m very alone and very scared
And my brain won’t stop replaying that night
When I was ten and brave and strong
And nobody was gonna hurt my sisters
And it seems like just the most stupid thought
When some drunk or stoned arsehole is in the hall…

The mumbling moved away after a minute
A minute that felt like three months
I listened with my ear to the door for more
More drunken wanderers or the mumbling
of the first wave of the zombie apocalypse
Because once you set my brain on a track
It’s gonna take it ALL the way to Where The Hell
That’s the fun part of the renegade virus…

So, I’m laying here trying to get back to… not awake
But I’m really sitting cause it’s easier to write
It’s been two hours now
And I’m not sure if I want to know what LSD visions
Ole EBV will make of tonight’s festivities
So I’ll stay awake here with my friend insomnia
He’s always here for me, knows all my crazy
Never laughs when I wear my Dad’s old shirt to bed
Or make my pillows into the shape of someone
Someone to watch over me
Someone who won’t let me be here
Alone
With all these
Thoughts

kei
September 2013