Chronic Life Silver Linings

So with a neurological disease in the form of chronic migraines
and a disease of the nervous system in the form of fibromyalgia,
Some days I really really struggle...well let me be truthful, most days I struggle.
I TRY to see my body as a magical and intelligent vehicle but often I hate this body of mine...

not for how it looks but for how it feels & makes me struggle & fight just to have a normal day.

I am really struggling still with the fact that I now have two chronic pain illnesses.  1 was enough!

On days when I need to be extra strong for my loved ones, like during our many hospitals visits,

I often feel like I am falling short because I am suffering so much myself.
It often feels like by the time I deal with what's happening on the inside of me,
I just don't have enough energy left to deal with all the crap that's going on on the outside of me.

I worry I am not giving enough to others and I am really struggling with that sense of weakness.
Especially since my husbands cancer diagnosis. I feel like I have to be stronger than ever before
but the truth of it is, I've never ever felt so weak in my whole life.

BUT all that being said, I am also feeling quite uncharacteristically unapologetic.
I have been zoning in on my priorities because I have to shave the nonsense away.
I am concentrating on; taking care of me, my family and my art business (because it's been put on the back burner the last year or so and that's not feeling okay with me whatsoever, I believe in my work).

Since my loves cancer diagnosis and since my own diagnosis's,
I can now more clearly focus on what's important in my days &
I am finding I can let the shit go easier, either that or I am just not putting myself so near it anymore!
There's a streamlining of priorities happening & that's a really good thing, a silver lining if you will.

And because of it, the streamlining I mean,
I have been able to find just a smidgen more energy to give....
to myself, to my loved ones &  to my business...
it's happening, there's movement and that's heartening.
It's still hard...some days are harder than others.

Because when I open my eyes to just how debilitating each of these diseases are all on their own,
let alone together, sometimes all the facts push me down, wayyy down
& it takes me awhile to crawl my way back up again!
BUT it's all a 'work in progress' & I am happy to share my struggles along the way.

Fibro Flares

I am still really struggling with my diagnosis of fibromyalgia.

It's a game of what is the fibro, what is a flare up and what is something else to worry about.

On top of my chronic head pain it just feels like too much for my body to deal with

and now with my husband going through cancer,

there are days when I want to scream at the top of my lungs 'Enough...I can't take anymore..."

I need to be extra physically strong for both of us right now, for the rabbits too but

usually it's my honey who is the strong one, and the one who takes care of me & of us when I can't...

yet some days, after the pain, I am left with hardly enough energy to get by,

so I have really been struggling.

I can't tell you how I dream of someone kind, recognizing our hard time

& just leaving a pot of vegan soup on our doorstep to help us out!

I have also been dealing with a really really sore hip.

My doctor said it was likely bursitis of the hip

so last week I got a cortisone injection but it hasn't helped whatsoever.

And I am disappointed because I really needed a quick fix on this one for a change!

The pain keeps me up at night & grates on me all day long.  I am left again wanting to scream.

I am going to start physiotherapy soon, but I want/need a solution like yesterday.

And this is the thing I am finding tricky with the fibromyalgia...

I left this hip pain way way too long.

I just was assuming it was part of the fibro.

And when my head is sore all the damn time, on top of my love, on top of sick rabbits,

I just don't want to go for another appointment so I tell myself 'you'll heal' or 'it'll go away'.

And there is my lesson, don't assume everything is the fibromyalgia...

Ugh...why can't this little body of mine take it easy on me for a change!

A Home For The Pain

Just a day back in summer when I had a wretched time with like a two week migraine...

I was hiding from the sun during the day & looked forward to dimly lite time on the deck at night.

Other people might not 'get' this house of ours but it embraces us so fully.
We both work so very hard making this place cozy for exactly these kind of pain-riddled times.

Some Days Just Look Like This

When your a chronic-pain sufferer, like me, some days just look an awful lot like this...

your horizontal, your feet are up, you've got your fuzzy blanket on...

(I usually use a sleep mask to block out light because I refuse to plunge the whole household

into darkness just because of my head pain, I love light even on migraine days, to a point anyhow!)

Sometimes you just have to relent and admit that you'll get squat done that day...

It's not easy for me, I am super stubborn & I love getting things done.

But here on the couch is a good place for me cause I have a big green shelf full of favorite do-da's

to look at, ha ha, (it's also about all the little tricks to get through the pain with a light heart too)!

It Takes Tenacity

I've been having such a hard time with my head-pain the past 2 or 3 weeks especially.
Migraines are SO physical but they are weird because they are invisible to everyone.
As much as you want people to understand your invisible physical torment they just can't
& it's all on you and you alone to get through it.
You have to jump through mental hoops to get yourself through
and often we're tackling those hoops freshly every single time.
I've been thinking about how I live and get through my days with all the pain,
not physically so much but emotionally...how am I am still a joyful person despite all the hardship?
I think one of my tricks to still being a happy person despite this physical hardship of mine is that

I never take for granted, no matter how many 100's of times I am stuck in a dark bedroom etc

those first hours when I can actually open my eyes and look at sunlight without stabbing pain,

When I can walk slowly in my beloved gardens & bend over to smell the flowers.

Where I don't want to puke when I inhale the air thick with beautiful lilacs.

Or most important of all, when I can get down to snuggle the buns and play with my hon or when I can get into my studio & actually look forward to work, no matter how short or long that may be.

I know all the little beauties that make me happy & which keep me afloat and I surround myself
with them & I rely very heavily on them during all parts of my pain, before, after & during.

It takes an awful lot of tenacity this life with chronic pain.

Life with chronic & acute pain is hell...there is currently no escape...

there is nothing I am doing wrong,
that's the misconception with migraines and headaches that I find so frustrating.

People are just trying to be sweet & helpful when they suggest that it's my diet or an allergy etc...

but migraines come from a misfiring in the brains network...

when the walls of certain blood vessels contract & detract & why they do so is unknown

and so there is currently no cure only pain management & for many of us nothing helps.
Yes, for sure there are triggers for the pain but most head pain sufferers know their triggers
and trust me on this, we avoid those triggers like the plaque if we can but my biggest trigger is
the weather & barometric pressure, the one thing there's no way to escape or avoid whatsoever!

So may I kindly ask you to keep in mind the next time your near someone with a sore head,
don't offer us diet advice or ask if they've tried Feverfew or the newest Advil etc...
(YES, I am on Feverfew...and Magnesium and CoQ10 and B's etc etc etc)

Don't praise the benefits of acupuncture or massage or tantric yoga!!!
(because most of us have tried everything under the sun!)

Just offer us a glass of flat ginger ale for our nausea tums...keep the rooms dark and quiet...
don't get mad at us or make us feel bad if we have to cancel plans on you,

just check in on us every once in awhile so we don't spiral in the lonesomeness,
maybe leave us a beautiful healthy pot of soup at the door...

offer us an ice pack to wrap around our neck and bring us a hot water bottle for our eyes...

give us a little hug, a pat on the back, admiration for our tenacious spirits

and count your lucky lucky stars that you don't suffer to!

Best Not To Think Of It!

I lost my whole weekend to a super bad migraine...I mean bad bad...

like on a scale of 1-10, 10 being the worst...Friday night I was at a 12 and I just couldn't

get to the hospital if I tried, let alone sit there in the emerg for goodness knows how long!

I wish so much there was a special protocol for migraine sufferers, there's enough of us out there!

It started easing up around Sunday 6pm but I've had to move like snail since then

as every time I forget and I move at a normal pace, the throbbing starts and threatens again...sigh...

I've been feeling blue to tell you the truth...how much time & energy I loose to this chronic pain...

Oh my fighting spirit is just on a hiatus, it will return, but until it does, it's best not to think of it!!!

Sweet Saturdays

I LOVE these freezing cold winter Saturdays (as we rest up from a big scare with Yuuji this week)

you know the ones that are just drenched in sunlight

where it's too damn cold to go out anywhere...

where you stay inside all happy as clams...all warm and snug...

My New Year head-pain wise hasn't been off to a cracking start,

I've been having more pain-filled days than not BUT that's okay because in between that crap,

I get all of this too...sun-dappled precious as pie bunnies,

a cozy sweet home and a gorgeous kind sweet vegan man waiting for/helping me. Ahhh Good stuff.

I've Been Thinking About Interviews

So I have for quite some time been thinking on how I can reach new kindred spirits & connect?

But not just to connect but share the beauty of that connection too, so therefore,

how could I use my blog to do so?

For about two years now I've been intrigued

by the idea of interviewing people on this beloved spot of mine.

But not just anyone...

Artists but even more specifically tenacious artists, like me, who create with chronic pain.

And artists or non-artists who love animals and make their lives & families around them.

 

 

Do you think it sounds good?

I'd like to begin soon because enough is enough...I shouldn't procrastinate on it any longer.

Connection is a thing of beauty and is sadly becoming rarer as the world gets meaner.

I know I am definitely not the only migraine/headache suffering artist out there

nor by far the only one obsessed, devoted, fulfilled and in love with a life revolving around animals.

I want to find more of these fellow souls and I want you to meet them too.

 

So let me ask you, do you know any people who fits either or both of these descriptions???

Email me at Whimsy@MandySaile.com

and let me know or maybe you have a great idea of where I can find such people

and maybe I'll connect with them & than maybe you'll see them here.

Yayyyy!