Part of you

imageA little note to myself which is so much needed today.

Don’t be ashamed to shed a tear.
To me tears clean the soul so you can once again see the beauty around you.

Being vulnerable only shows that you’re able to face the truth.. even the hard truth.. with dignity and with heart.

Open yourself up. Allow yourself to feel no matter how hard or torturing it may be.

Take down any emotional brick walls you have built around yourself and experience every emotion, both good and bad.
This is real life, you can’t hide from it, you can’t hide from the devastation, the hurt, the pain, the sorrow,the lose, the emptiness.

For what are we if we don’t feel?

We become cold-hearted, lost souls with no heart.
It really is ok to break down once in a while, you won’t be weak because of it.
And even though no amount of tears, pain and heartbreak can fix you or change anything, it’s better than closing down and denying what you feel. (I’ve been doing this a lot lately, not even admitting my true feelings to myself because the emotional pain is to great, to intense, to good damn painful.)

Your emotions are part of you, they are you.

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No amount of never’s

imageI never got to tell you that I love you or to hold you in my arms
I never got to hold you close when you began to cry
I never got to see your toes or have your tiny finger wrap around mine.
I have got to burp you or see those first wind smiles
I never got to tuck you in and gently kiss you goodnight
I never got to watch you suckering as I held you in my arms
I never got to watch you grow or see your personality shine.
I never got to comfort you when you first tooth decided to show.
I never got to play raspberries on your soft tummy
I never got to see you smile or hear your delightful laugh
I never got to give you so many perfect memories which we both would have treasured dear.
I never got to say that’s my boy as I sparkled with pride.
I never got to see you walk or run while chasing butterflies
I never got to do all those small things a mummy does with love
But with all the never’s that you and I never got to see or do, no amount of never’s can stop me loving you.
Sleep peacefully my Angel until we are together again ❤️

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There are moments in life

imageMy dad sent me this back in 2012 I thought I would share it with you.

There are moments in life when you miss someone so much that you just want to pick them from your dreams and hug them for real.
When the door of happiness closes, another opens, but often times we look so long at the closed-door that we don’t see the one, which has been opened for us.
Dream what you want to dream, go where you want to go, be what you want to be, because you have only one life and one chance to do all the things you want to do.
May you have enough happiness to make you sweet, enough trials to make you strong, enough sorrow to keep you human and enough hope to make you happy.
The happiest of people don’t necessarily have the best of everything they just make the most of everything that comes along their way.
The brightest future will always be based on a forgotten past, you can’t go forward in life until you let go of your past failures and heartaches.
When you were born, you were crying and everyone around you was smiling. Live your life so at the end, you’re the one who is smiling and everyone around you is crying.

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.

There is always something…..

imageEven in the most peaceful surroundings, the ungrateful heart finds trouble.
Even in the most troublesome surroundings, the grateful heart finds peace.
Remember this. There is always, always something to be grateful for. And being positive in a negative situation is not naive..it’s a sign of strength.

You’re doing it right when you have so much to cry and complain about, but you prefer to smile and appreciate your life instead.
If you’re struggling with this, start by being grateful for all the problems you do not have.
Let go of the need to complain about life, and spend more moments actually living it’s beauty.

Change the phrase

“I have to” to “I get to.”

So many things we complain about are things others wish they had the chance to do.

The desire

imageThe desire for constant happiness only makes us miserable. Because nothing in life is constant. There is neither absolute happiness nor absolute sadness. There are only the changes in our moods that swing between these two extremes.
At any given moment we’re comparing how we feel to how we felt at another time.. comparing one level of our contentment to another. In this way, those of us who have felt great sadness are best able to feel heightened feelings of happiness after we emotionally heal.

We must know misery to identify times of elation.

The key on a daily basis, nevertheless, is to live your life in full. Experience the highs and the lows, the positives and negatives, and all the moods present in between.
Don’t focus on simply being happy.
Focus on living a well-seasoned life. Focus on achieving completeness. Yes, happiness is part of this completeness, but so is sadness, difficulty, frustration, and failure.
And overcoming these latter points supports your personal growth far more than constant happiness.

Choose

imageLife isn’t a straight forward, there isn’t a set timeline of milestones. But sometimes the pressure coming from peers, family, work, and society in general is enough to make us feel completely broken inside.
If we don’t have the “right” job, relationship, lifestyle, and so forth, by a certain age or timeframe, we assume we’re somehow broken.

And that’s not true at all.
You’re allowed extra time when you need it. You’re allowed to backtrack. You’re allowed to figure out what inspires you at different stages of your life.
Life is meant to be a series of zigs and zags. It should look like a mess, but a beautiful mess.

So whatever situation you’re in right now, just know that it can change if you want it to. It’s up to you.
You just have to turn yourself around and choose what you want to do.

Invisibility

imageI have been meaning to write this blog for a while now but how does one put into words the torment, pain, tears, worthlessness and fear that an invisible disease brings to our life’s.

The last few years have been hell, even with a strong mind and positive attitude, life has been incredibly hard, if only words didn’t fail me.
Yes at times I have begged for the pain to stop, to close my eyes, to fall asleep and let life slip away.
I hate to admit it but the struggle to get through an hour of a day has been way too much at times.
But not only once but a few times now when my body gave up the fight and the doctors/surgeons took it upon themselves to bring me back with I guess the help of a single voice that pulled me back to the land of the living.
Maybe it was a gift but I do at times wonder why, my life has been given the green light to continue when I wanted so badly to cross that fine line between life and death.
Maybe it’s for an unknown reason that I have yet to discover.
Or maybe I’m meant to be tortured a while longer. Who knows ???? I dealt I ever will know.

The thing is, life every second, no matter how hard or how sad, no matter how low I fall, how much I want out, life is beautiful.
Everything around me is a blessing.
From hearing my daughter laugh and sing, to even her tears, I’m so lucky I get to see and feel every emotion that comes with our life together.

To the birds singing in the trees, to the robin who sits so close to me and watches the world go by and waits patiently for me to loosen the earth so she can go about feeding her young, building her nest and putting joy into our life’s with her song and her beautiful red breast.

To the baby lambs that wake us up every morning, letting us know that the world is awake and we are missing the beauty as we lay in our beds.

To the kitten and puppy cuddling up together on a chilling evening, playing together as they teach each other new tricks in the game of life.

These are my reasons why life no matter how cruel it can be, no matter how far off the wrong path I may be, no matter how long the nights are and how lonely life can be and how much I miss and love certain people who I can’t hold close and let them know how loved they are.
No matter how bad the pain gets as my body fails slowly and the struggle to hold on to a normal life grows harder by the day. No matter how frustrating it is to not be able to run along the beach or just sit watching the waves crash against the shore.
Life is hard really hard as these diseases eat slowly away at me.
Life though is still a beautiful gift, if only we open our eyes to the smallest of things around us, I truly believe every tiny thing we take for granted is what makes life and living worth fighting. ❤️

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A laugh, a smile and a warm fuzzy feeling

imageWhen things aren’t going well there’s a tendency to extrapolate and assume the future holds more of the same. For some strange reason this doesn’t happen as much when things are going well.
A laugh, a smile and a warm fuzzy feeling are fleeting and we know it.
We take the good times at face value in the moment for all they’re worth, and then we let them go. But when we’re depressed, struggling, or fearful, it’s easy to heap on more pain by assuming tomorrow will be exactly like today. This is a cyclic, self-fulfilling prophecy.
If you don’t allow yourself to move past this, you will look at your future through that same dirty lens, and nothing will be able to focus your foggy judgment. You will keep on justifying, reliving, and fueling a perception that shouldn’t have existed in the first place.

It’s hard to change that state of mine, but if you don’t at least try you will never know what could be.
Trying never killed anyone so take a chance and see if you can make your day that little bit brighter.
Maybe just maybe there is a bright shining magnificent light at the end of that kind scary dark tunnel.