Those of you with Fibromyalgia and other invisible chronic conditions,
(in my case this has happened when mentioning F, CFS, TMS, TMJD,
Multiple Chemical sensitivity, gastric asthma and idiopathic facial pain)
how have you been treated when you mention it?
(both to medical ‘professionals’ and people you know)

You may have heard the following, let’s call them ‘slurs’:

“Ah! Not that F-word again!”
“It’s a dustbin diagnosis”
“It is all in your head”
“That does not even exist”
“I have never heard of it”
“You’re just lazy, start exercising”
“Just don’t think about it! “It’s attention seeking”

and for the grand prize:

“Well, get over it!”

I have heard all of these.
I hope you don’t depend/live/work with someone who says these things to you.
I have long ago stopped trying to explain or defend this and only surround myself with those who do know and have a deeper understanding what it is (mostly inflammation) and how it could/should be treated and specifically aimed at the individual.

If they start with these slurs and you depend on them, they still have no right to treat you this way and if they are medical, one has to question why they are in that position if they are that insensitive and unprofessional. (I’m putting it mildly here)

If they are from your personal life, they should be careful judging a pain they have never endured.
If they are medical and you don’t depend on the person- and if they keep treating you this way, fire them and say you won’t be using their services any longer.

Time to reclaim our health, starting now ❤️

How do you cope with a worsening of your symptoms?

Do you know that iconic image of the man in front of that tank in Beijing?
I always think that is me.
I resist.
I refuse to accept.
I say: “You shall not pass.” (The monster pulled the wizard into the abyss after he said that, so it might not be easiest tactic 🙂

Let’s say you have issues from an old knee injury and dancing makes it worse and yet…you sometimes dance…
Let’s say you have a jaw joint disfunction and chewing on nuts aggravates your condition….yet sometimes you eat nuts…
Let’s say you have fibromyalgia and doing heavier physical work sends you in a flare…yet you sometimes do this…

These “let’s say-scenario’s” are me.
It’s life.
Sometimes you have no option at a certain moment.
Sometimes you want to enjoy yourself, pretend you are fine, forget you have to be careful all of the time.

I resist.
Resistance can be either fertile or futile but it’s the latter in this case.
How do you win this mental war/battle? (it’s as much mental as it is physical)
Especially if your coping-mechanism is resistance.
The war of: “why, oh why did I do “x” to make it worse?”
It is so draining and exhausting.

“Resisting the circumstances of your life, is like saying to a river:
-you should not be flowing here, you should be flowing over there-” Gary Zukav

Perhaps you have other ways of coping that are less tense.
If you recognise yourself, however, I think we need to focus more on our breathing and allowing.

Just to breathe and think, for one moment even:
What happens if I let it go?
What happens if I forgive myself?
What happens if I just observe the pain?

Let’s make it easier for ourselves.
May your days feel light ❤️

For my beloved uncle, who was more like a father to me
and for those who have lost loved ones who lived with chronic pain

————————————————————————-

My dearest uncle,

Oh, how I miss you.

You were one of the few who understood.
Always. No words needed.

Your days were so difficult. Your last days even more.
We were in the dark.
A thousand miles apart, we did not hear much news,
nor did we really know how ill you were, until you passed away.

After you left this realm, I prayed. I begged for a why.
Like a perpetual eulogy, over and over:
Please, let this life in pain, not be a life lived in vain…
Please let it all mean something.

Like we sometimes wondered, together, about this pain, this thief… is it a sentence on a prison planet?
Or a way to deepen our insights, to clear spiritual debts?
To be the sense in the nonsense and fulfil our destiny?
We didn’t find the answers, nor the way out of the maze that is chronic pain.

Perhaps you did and perhaps you know now.
I hope and think you do.
In your eternal state, you must know.

Fly now and prosper, pain-free!

I love you infinitely ♡

S.

Sometimes I write poetic descriptions about pain. (as in a personifying the pain)
The past weeks I went through an episode with horrible, unfamiliar pain…

Strangers

Some pain and me,
we know each other.
We sit together, without words.
But there is some pain I can’t identify.
‘We remain strangers’

Never properly introduced,
or I would have declined,
turned down any meeting.

Unaware, I leave my door ajar;
the unwanted guest makes his way inside,
with,
a sudden stabbing ache,
an unfamiliar cramp,
an odd shooting pain.

Then, like the shocking insight,
that an intruder just poisoned you,
you see the door.

Some pain and me,
we know each other.
This other pain and me:
we remain strangers.

How do we speak to ourselves all day?
Regarding our chronic pain, how does it make us feel,
what emotions do we have about it and are we even aware of them?

Living with chronic pain often means you build a negative self-image overtime.
I don’t speak to myself in a positive way as much as I should.
How is that for you?

It’s more likely that you will encounter scenes like this:

Me, sitting on a bench, head down, speaking to my body:
“You failed me.” (Don Corleone voice)

“Your inner landscape is the anchor of your experience
It is richer than your outer landscape,
no matter how awesome the night sky,
or how immense the turbulent ocean that is rushing toward you.”
Gary Zukav- The heart of the soul

All the negative speak can affect us (and our pain) for the worse;
bad posture-shallow breathing-hyperventilation, TMS…..

Body, mind and spirit being connected, we have to become more aware
of our inner landscape and how we talk to ourselves all day.

Are we our own worst critic or biggest supporter?

A few years ago I stepped on something outside my door. It was so painful that I assumed that a thorn or splinter had gone straight through my foot and was afraid to even look.
When I eventually did, I saw it was just a tiny splinter in my thin soled shoe and I pulled it out quickly without much afterpain.

Ouch. That’s what over a decade of pain had changed me into? This whiny, extremely oversensitive person? Except, I was sensitive before my chronic pain started and one should not use this word at all (what does it mean anyway. It’s like saying “you are over-lefthanded”) and especially not in in this context….

It reminded me of a story I once read, experienced by Lorimer Moseley, a clinical scientist from Australia who studies pain in humans. The very short version:
When he was bitten by a snake once, he was in a lot of pain and had to recover.
One day, he was walking in nature and thought a snake had bit him again, as he experienced the same pain and agony. But he had just brushed against a thorny bush…..

If a (new) pain is extreme, then to me it is more about duration, less about the severity.
How long will it take and how long will you have to endure it? If you knew this at the start, it would be a very different experience. I would say the key word is uncertainty. It’s the not knowing what you are facing and for how long (will it get even worse?) that makes it much harder and your brain registers it more as danger.

“The longer you have pain, the better your spinal cord gets at producing danger messages to the brain, even if there is no danger in the tissue” Lorimer Moseley

There are ways to retrain-the-brain and I am looking into these.
How is your experience? ❤

How do you fare while going through a flare?
Since the whole past year was basically one long stretched flare, forced upon us…..
(double facepalm and painful eyeroll)
it’s something I have been thinking about every day.

See, with chronic pain-and flare ups, to be precise,
you feel like you were on a Kafkaesk auction.
Never been to a real one, nevermind this type, so you don’t know how it goes.
Yet, there you find yourself. Like in dreams, no idea how you got there,
but you’re in the centre of the a(u)ction.

You’re sitting there in one of the rows and exactly when the auctioneer says:
“Going once, going twice…”, you casually stretch your achy, carpal-tunnel hands in the air and you hear, while all eyes are on you: “Sold to the lady in row three!”

You then find yourself with a bundle of flare-ups, no returns accepted.

Perhaps that is what life is, really
and the times we find ourselves in, an insane auction-house in itself.

With a highly uncertain future for all and while trying to find some light in the days,
I’m pondering how full or how empty ‘the glass’ is (half-full, half-empty) and how I should proceed.
As a mother, my name is spelled h o p e and I think there is no other way
than making the fall part of the dance, as they say.

Some days you will be “ok, I’m done and here is the fall.”
With the grumpy-never-resting-wrinkle-inducing-face,
cursing both the darkness, the candle and the auctioneer. There you remain, on the floor.

Some days, although your hair (mine) looks like the birds will soon use it as their nest,
although you feel like you are being deconstructed by the pain,
although you are hanging on by a thread, …you still rise….It was the dance, obviously!
With clumsy moves, cliché words and used metaphors, but such grace and flair! 😉

May your days feel light ♡

Diving into icy waters
walking on fire
all the stunts
the world seems to require
The bed of nails
the barefoot trail
all of these
I would certainly fail

I climbed my own steep mountains
I’ve braved the still unknown
I was made of silky threads
while the world demanded stone

I search my mattress
for the pea
I’m not
unbreakable
Why do I have to be?

————————-

There is a Japanese art/technique called KINTSUKUROI/KINTSUGI, where broken objects are mended with gold. They say that the fact they have been broken is part of what they are and it makes them even more beautiful, symbolised by the golden lines.

I love this. The wounded healer! Perfect imperfections ♡

– The beautiful – and I like to say -previously- broken beings that we are, in the process of being repaired ♡

In all the years of chronic pain (nearly fourteen years for me)
I realised that besides, “you will heal”, what I most wanted to hear (or feel, not everything needs to be said)
is something only one person (my mom) has ever said to me:
” I will never give up on you.”

People who don’t carry ‘this burden’, don’t fully know how it is, this life. They simply cannot.

But…..as I often do when I wonder if someone is offering me what I need or not;
I go within and ask——do we even say this to ourselves? Do we?
Do we unconditionally support OURSELVES in this way? If the answer is NO, can we even expect or hope to hear it from others, who don’t know how it feels to live like this? It is not easy to ask yourself this….but it is rewarding and it comes down to self-love and is an unavoidable part of healing. We owe this to ourselves.

Today I will say it to myself-and tomorrow again- and I want you to say it to yourself:
“I will never give up on me”. ❤

While I was watching my daughter’s favourite movie (Willy Wonka) for the hundredth time, I was thinking about Grandpa Joe.
The man has spent twenty years in bed , thinking he will never walk again.
Until his grandson brings home “The golden ticket”, which makes him get out of bed and not only walk again, but even dance!

This random golden ticket.
This gets him out of bed after two decades.
It makes me think of the horse tied to a plastic chair.
He can walk away, but he won’t.

As I like to challenge myself,
I have started wondering what my plastic chair is and what The golden ticket.
Is there self-sabotage within me?
My conditions are complex and go way back, it’s not simple.
I am willing, however-and one has to be, on the path of healing- and in order to heal,
to look at this carefully.
What can be marked as “it is what it is” and what can be changed?
Healing has to happen on many levels, body, mind and spirit.

The call to rise to the best version of yourself is your golden ticket
and I’m reaching for mine.

Love,
Silvia