Under attack

Why is it some mornings you wake up and just feel blurrrrr.
Today is one of those days.
I woke from a strange dream, feeling a tad pissed off and instantly wanted to cry.
Why?
Nothing is wrong apart from all the devastation that going on in the world.
I’m pretty happy and was looking forward to the last day at home with Marly-Kate.
So I drag myself down the stairs, make coffee and sit in peace and quiet while flicking through my favourite websites, making the most of me time before music blasts from my cousins room or Marly wakes and wants to cook her own breakfast. 🍳
Still feeling out of sorts, I stumbled across a devastating photo of the forest fires in Montana.
Fear rushed through me, not knowing if my uncle, aunt and cousin are safe. (Thankfully they are) but still my heart is heavy. This world, this beautiful world is under attack from the elements and my heart bleeds for all the families that have lost so much.
I know belongings mean nothing but I can’t help but think of the memories that have gone up in smoke or destroyed by the floods. How do you ever replace those photo albums, those memories. It heavily pulls at my heartstrings.
So while I woke feeling, I don’t know what, I’ve no reason to. Life is precious and I’m sat drinking coffee when other are loosing everything they’ve known.
I know one thing for sure right now, I will definitely be practicing our fire album escape today. You know they say you only have two to three minutes to get out. That’s terrifying.
Do you know how you would?
It is so worth having a plan, it could save life’s after all.
And even though it unsettles Mars every time we practice, it has to be done.
So as I try extra hard to shift this mood and lighten this dull, grey, wet day my thoughts are with all of you that have troubles, and I wish my wonderful American friends, all the sunshine, light and strength they need.
Stay safe guys and have a great day.

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The Wolf.

imageGoing back to a post I made about invisibility, a blog I wrote about living with an invisible illness. https://icemaidendiaries.net/2015/05/15/invisibility/
I’ve been asked this question over and over and to be honest it is a hard one to sum up.

What’s it like to have lupus?

In reality, a day with lupus is never the same, with in minutes, an hour or a day you can feel totally different, but there is always a constant feeling of dread at what is happening to your body.

From joint pain and stiffness. Some days I am confused by simple tasks. Other times I can feel the heavy, pulsating beat of my heart, causing me to be dizzy, exhausted, and worried. My digestive system is in a constant state of confusion.
My skin itches and tingles and burns every day, all day long. Every day I have difficulty breathing. It is almost as if my lungs can’t fill to capacity, and breathing itself causes excruciating pain. My head pulsates and pounds, feeling as if it will explode. my mouth ears and nose are full of sores, making eating and drinking a task of torture. The simple act of wearing clothing is a painful endeavor worthy of any medieval torture device known to man. Every day is like an obstacle course laid out before you in the form of daily tasks. Only when you finish it, you are required to repeat it again and again until you go to sleep that night. But the air surrounding your body is made of sinking sand, making every movement you make harder than you could ever imagine.

Add to that, the painful sensation of all the nerve endings of my body are on fire. It starts at my feet and slowly works its way systemically up, until every part of me, from my toes to the top of my scalp feels as if it is being stuck with needles, and battery acid is running through my bone marrow, bubbling to the surface of my skin with a fire so intense no amount of cold water or fresh air can put it out. My face burns so intensely that it feels as if acid has been poured on my skin. My face is on fire and it’s shown clearly by the butterfly affect glowing shades of red to black as the blood rushes to surface. There is no where to hide as people stare and make jokes about my forever glowing cheeks.

Every night when I lay my head down to sleep, it is as if I am adrift on a raft, uncertain of where I will be when I wake up. Every morning is different. The only thing that is certain is that things will change, no matter how good I feel. There is a constant state of uneasiness, that I realise is now my constant companion. And then I awaken and do it all again–every single day until a cure is found.

I feel, every day, that I have been given a test of survival. Despite the strength everyone says I have, the daily struggles are a constant reminder of just how vulnerable I am. I am never on solid ground, it is always shifting beneath me, and it takes all my energy to just stand on my own two feet.

There is no cure for lupus. If my bloods become good, it doesn’t mean I am cured…it just means the wolf is caged, for only a brief period of time, and she will be back.

At times I am convinced that somewhere in this world, is a replica doll of me being held in the hand as pins are stabbed into it, sadly my consultant disagrees and blames a broken heart which slowly but surely is shutting my body down.

For those of you that don’t know, Lupus is often refer to as “The Wolf” As with Red Riding Hood, you are never completely out of the woods and safe. With every slurred word…with every twinge of pain…with every rapid or slowed heart rate or indigestion, we wonder…is that the wolf lurking and licking at my heels?

In a sentence…my body has forgotten how to mechanically run on its own.

Life without friends is like life on a desert island…

imageI wanted to say thank you and sorry also for the weekend.
It was lovely to all get together and spend time with you all for Sammy’s birthday.

Visiting the Isle of Wight for the first time in like forever brought peace but also some very painful but happy memories.
Drinking hot chocolate in my favourite cafe was a trip down memory lane.
I did chuckle to myself over a finger of fudge 😃

And it brought a smile to my face, yep a real one not forced.
I wish I could bring back those feelings again, when the world was mine for the taking.

Watching you all, walk almost skipping along the sea front, splashing each other like you all have no cares in the world was a beautiful warm feeling but also sad because I couldn’t join in and feel freedom.

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As I wrapped up warm, sat in the car, I thought about how many wonderful weekends we have spent there, without a care in the world, and as I blissfully fall asleep with the memories floating around, I had the most care free sleep I have had in a long time, one where he didn’t haunt my dreams.

I don’t know how you all got back in the car and drove to Freshwater without me even knowing it.
Waking up to the view of the most delightful beach as the sun set was like stepping back in time, to when life was easy and pain wasn’t the ruling factor in my life.
I want to say thank you for giving me a feeling of hope and peace but I also want to say sorry that I couldn’t join in, in your antics.
I know you all understand but I still have to say it.

At times like those, I really miss having good health.
It makes me realise that the things I took for granted really do matter.
Watching Al set up his camera to capture the moment, to frame the beauty of the sea and all its hidden gems, it makes me feel sad that I can’t jump in the shot at just the right time to put a ghostly figure in his photograph.
It makes me sad that I can’t look for a different view and catch the shot of the day.
What one eye sees as beautiful an other eye sees perfection.
I miss those days of stealing his thunder, lol. (Not going to happen with my mobile)

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I miss capturing Sammy and Lee, sneaking a kiss or walking hand in hand across the seas edge, in their own little bubble, captivated by their love for each other.
I miss seeing their faces alight as I show them the stollen moment I caught on camera.
I miss seeing Brett and Cassie acting the clowns, and plotting how they can get everyone drenched.
I miss the way I would lose myself as I watched the waves come tumbling into shore, wondering what secrets, life’s and regrets have been lost to the sea.
But what I miss most of all, is our dear friend Porter being there.
How we would all sit round the fire and watch the flames as he sang “Amazing Grace, Chasing Cars and We are sailing.”

How he loved the Island, how his passion rubbed off on us all and made us all fall in love with his place.

I really thought it would be harder going back there but it almost felt like he was with us.
I’m sure he was with us in his own way.

As night fall upon us and we sat around the fire, talking for hours about him and our memories, it just felt right to write a little letter to him and throw it out to sea.
It was the perfect end to a lovely day. (Thanks Sammy, great idea.)

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Thank you all, so much for sharing your tears, laughs and memories with us all and bearing with me as I struggled throughout the day and evening.
I couldn’t ask for better friends.
Thank you xxx