Vanished

Where o where is the time going?
With a blink of the eye, a week seems to just vanish. A week that I achieved absolutely jack.
I have no idea where it went or even what I did, all I know is it was a painful one and a week to be grateful to the wonderful people in my life.
Without them my darling daughter would have gone crazy with boredom.
There is only so much one person can take, watching their world in pain.
All I can say, is god damn you teeth and dentist.
My one and only wisdom tooth has been giving me so much pain that I’ve been in a constant morphine state, which brought with it vomiting like I’ve never experienced before. 🤢
Thankfully yesterday he took the bugger out and omg the pain now is worse than before. 😫
But it’s out and healing.
I’ve forgotten how food tastes, I’ve been dreaming of coffee ☕️ and screaming at the so-called greater good to give me a rest bite from toothache.
Why on earth do they call it toothache? It should be called torture of the worst degree.
I swear blind that it has to be the worst physical pain out there. How can one tiny tooth, hurt your entire head, even you eye sockets feel like someone has them in a vice, tightening it every millisecond. Your ears feel like they are bleeding with the pressure, everything about it, is awful.
What gets to me the most is, it’s not even through lack of caring for them, I have always taken get care of my teeth, I’ve spent a small fortune having them capped, along with that dreaded six month check up and hygienist visit.
All I can say is thank goodness for denplan.

After seeing the price of dental work it’s no wonder that we live in a generation of bad teeth.
Your teeth are so important and we see more and more people with stained brown smiles.
It’s a sad state of affairs, truly it is.
I’m more than grateful for the NHS, I would be lost without it but even the nhs dentists charge the earth for a filling. People just can’t afford to pay to keep their smiles up together.
It’s beyond sad.
It’s almost like we have taken a trip back to the Victorian times, were only the rich could have that beautiful white teethed smile.
How can the world change by the day as we soar into a future of the most amazing inventions and still we have people who can’t afford to visit the dentist, not only that, but we have the working class using food banks. ☹️
What is becoming of us and what on earth does this world hold for our future generations?
Free Dental Treatment Please 😜

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Flashback Friday

imageTime is flying by, can’t believe we are heading towards the middle of August already.
Another Friday has come and another week is nearly over and what a strange week it has been.
It’s been a week of pain and feeling really under the weather. But I’ve somehow got through.🤒
One thing I’ve realised is my short-term memory is shocking. I’ve forgotten to take my meds a good few times this week, mainly due to my Fitbit not charging which I had set all my alarms to take different medicines at the right times. Feeling really lost without it.
Secondly down to not having a set routine in the mornings with no school runs to do life is a little slower and relaxed, I really need to get my self sorted because flare days kick me for six especially were I won’t give in and stay in bed.

A few major things have happened this week.
The scaffolding finally went up and work on my house starts next week I believe. (Fingers crossed)
My baby cousin who has lived with me while he was at college and before he signs up for the army got himself a full-time job and I really couldn’t be prouder. 😄
It’s his first day today, which started at 6am this morning. Bless him he had to leave here at 5.30am. He sure did look sorry for himself. He’s a little trooper and hard worker so I know he will be fine. Going to miss his ugly mug around the place though.😞

So let me get to it, its flash back time and as I’ve felt so poorly this weekend I thought I would share a post that I wrote about living with lupus but not just lupus, about all invisible illnesses. I’m not really sure if I ended up posting it on here or not, I know I meant to.
So here goes ……..

Life – isn’t it meant to be lived to the full???
So what happens when it is taken away from you, when everything you have ever known changes and you start losing the person who you really are.
What do you do, when every aspect of your life is controlled by your health, the weather and the people around you???
What do you do, when you can see your life, your soul, your spirit, your passion, your goals, your dreams disappear in front of your eyes???
What do you do, when your body is so against you, it fights you every single second of every day???
What do you do, when you have no energy to get out of bed, get dressed, carry out a normal day??? When you are too exhausted to even put the right words together, making you sound when you talk that you are from another planet???
When your memory fails you on a daily basis, because the medicine you have to take daily starts to destroy your mind, your sanity, your spirit???
What do you do, when the light hurts your eyes, and sound makes you hurt, shake, panic and twitch, making you have no control of your body???
What do you do, when your body feels like you have no air in your lungs, no matter how hard you try you just can’t draw enough air into you???
What do you do, when the panic takes over and you have no energy to fight it anymore???
What happens when you try to live a normal life, like trying to walk around a shop but the pain and exhaustion cripples you, making every step incredible painful??? Is it easier to give in and sit in the wheelchair and get the look of pity from everyone that notices you???
What do you do, when every step you take feels like you are walking through sinking sand or you’re trying to escape drowning???
What do you do, when people only think that you have cold hands and feet and think you are lazy because you can’t do things as fast as you use to and sit down every few minutes???
What do you do when the slightest human touch, makes fear run through you, swallows your air, and sends pain through your veins???
Not just human touch but clothes make you ache, sore and feel that you are suffocating.

What do you do???

Do you give in and waste your day in bed? Or do you do your best to carry on, not giving in to the invisible illness that is taking over you???
Or do you try to educate others by bearing you soul???

This holds my answer!!!!

Broken soul

No words can even start to make anyone one understand the pain of yesterday.
No kind actions by others can help to ease it.
No amount of tears can wash away the devastation, the longing, the heartbreak.
No amount of time can heal.
There is nothing in this universe that can even start to explain to you how I felt yesterday.
No just yesterday but every day, but yesterday it all seemed that little worse but the heartbreak never goes away. It eats away a me, day in day out and there is no way to stop it.
My family and friends tried so hard to make it a beautiful day, even the sun shone on us, but as always there is this gaping hole in my heart.
Part of me is missing and no amount of tomorrow’s can heal it.
No amount of hugs can warm my broken soul.

Flashback Friday

Enough week is coming to an end, the clock is slowly ticking closer to the weekend.
And once again it’s time to rewind back the clock to past blogs.
While looking back to find a blog post to share, I released that on the 19th Feb, I have written a few powerful post.
It was hard to pick one, 3 of them are in the running but I have decided to post one that may help others.
I will admit it makes me sick to the stomach to post this and shame and embarrassment washes over me and once again I have to put myself in the firing line of judgement in hopes that it may just help someone.
On a positive note, one I am very proud of, I have kept a promise, that I made to Ross, that I wouldn’t ever do this again and I have NOT.
I’ve kept that promise alive.
So here goes……………..

The first cut is the deepest.

https://icemaidendiaries.net/2013/02/19/the-first-cut-is-the-deepest/

My mum has asked me to write a blog, to try to explain to her why I self harm.
She asked me to try to make her understand why I would put myself at danger and why is it so hard to express my feelings without hurting myself.

I have self harmed since I was about 10 years old, and I believed I always had it under control.
I’m sure reading that, you are thinking, “Under control, how on earth is that controlled?”
When I say controlled I mean, I always use a clean blade, made sure someone was always at home, incase I cut too deep, that I cleaned and dressed the cut.

So maybe you are thinking Freak, well you would be within your right to think so.
But please bare with me while I try to explain this the best I can.
I believe this will be the hardest blog I will ever write and I am putting myself out there to be judged by you all.
A huge risk for me to take, but if I can put my mum’s mind at rest and even help someone out there understand a little, I believe that it is worth the risk.

I will always remember my first cut, the pain was incredible, and seeing the blood, made me feel sick and if I am honest I looked at myself and thought ” OMG I’m a freak”
I now can not remember why I made that first cut or why I did it again.
 (Maybe it wasn’t that bad after all, or I would remember why I did it.)

One cut I remember above all the others, I was about 12 years old.
I had been through an awful chapter in my life and I felt so much emotional pain that I did not know how to deal with it.
I felt totally alone in my life and I had no one to turn to.
I picked up a blade and without any thought to it, I cut my wrist.
I didn’t even notice the pain, I felt a release of all the emotional pain built up inside, leaking out with my blood.
All the hurt and anger pumped out of me and I felt free for the first time in months.
After that with every cut I made, my pain drained out, my soul was free, and disappointment was gone.

But Cutting is an addiction that you cannot stop once you’ve started, that’s why it’s such a tragedy.
You cut to feel better, sadly though, the whole time you are risking your own life.
What if you cut too deep and you end up killing yourself?
Last year, this nearly happened, I was lost and I cut too deeply and ended up in hospital. I nearly died.
If it was not for two certain people, one who knows me better than I know myself, he called for help which in turn, lead to me being taken to hospital, given blood transfusions etc.

I cannot really remember much about that day, but I know, I would not be here to tell this tale if it wasn’t for them.
I thank them for keeping me alive.

I still didn’t learn and I cut again and again, 
It’s was EASIER to deal with the Physical pain then the Emotional pain.
For some reason I saw the light, I saw a different view on life and now I hardly cut at all and when I do, it doesn’t give me the sense of freedom, it hurts and I am disappointed in myself.
It adds to the problems, and you know what, those problems are nothing compared to others.
So why am I letting them get to me.
My scars may have faded with the help of laser treatment and the depression suppressed but the urge will always be with me.
I am sure as sure, can be, that I can beat it, I want to beat it.

Instead of looking at the bad I’m trying to see the good that surrounds me.
Every day is a new beginning and a new page in my book of life.
As I have said many times,
” Life is for living, a gift.”
So when I go to cut myself, I now step back and think about,

what if it goes wrong? what am I leaving behind?

and then I see that life is worth having the bad days for.
With out the bad your can not see how good the good really is.

Life isn’t meant to be easy, it’s meant to be lived, sometimes happy, other times rough. But with every up and down you learn lessons that make you strong.
That’s what living is all about.

Self harm may help you for a split second, but the long-term damage is not worth it.
Please if you ever feel like it’s the only way, count to 10 look around you and see something beautiful,
a Smile, a Picture, a Flower, a Friend, remember a perfect Memory, think of your dreams, you still want to come true and tell yourself, to be strong.
If all else fails, remember you are loved and not alone. There are people to talk to who care and love you, for who you are.
Every cut you make hurts them to.

If you still can’t shake the feeling, remember this blog and throw me a message, maybe I could help.

The question WHY ???

imageI have been asked by a good few people “Why are you not blogging as much as you use to?” And “Why are your blogs not as personal as they use to be?”

Hmmmm I am not sure how to answer those questions.

Maybe it’s because I don’t want my family and friends to know how bad I feel most days, that I’m trying to protect them.

Maybe it’s that I don’t feel the need to get my feelings down on paper as much as I did.

Maybe it is that I don’t want people know how messed up I still am, not messed up but heartbroken.

Maybe I just don’t want to admit my own feelings to myself, let alone the world of the Internet.

Maybe it’s that I just don’t know what to write, that I’m not inspired at the moment, just a case of writers block.

Maybe it’s a case of never having enough time to even think, let alone write it down.

Maybe it’s because I’m sick of hurting so much walls have been built up again and this time I won’t let anyone but the only one knock it down again.

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.

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. ❤️

image

Betrayal.

imageBetrayal is the worst possible thing someone can do to you.
It is the worst possible feeling in the world.
It can crash the uncrushable, it can hurt deeper than any other thing possible in life.

This weekend I discovered through a friend, that I had been betrayed by the person I care for the most in my life.
The person I love more than the air I breathe, more than life itself.
What makes it worse is I have been blamed over the last year or so, that I had betrayed him. (how wrong were the people who believed him and judged me the worse possible way with out getting the facts and proof.)
When I know I never did such a thing, I have everything I need to prove this, if I had only been given time to prove it.
But I guess he will never see/know the truth and he has to live with that for the rest of his life.
At least I have the freedom of knowing the truth and it won’t haunt me the way it will him, if he even cares enough to let it bother him.
From what I was shown this weekend, it has never kept him awake at night, and maybe just maybe he hasn’t shed a tear.

The betrayal I was shown this weekend confirms to me that he really never cared.
That to me is the biggest betrayal known to men.
He lied to me for nearly four years.
He looked me in the eye every day and lied point-blank to my face.
What makes it worse is I believed him, I let him into my heart, I let him breakdown my walls, I told him my deepest darkest secrets and I let him make me believe that our future was solid, that we would be together for ever.
I truly believed him.
The funny thing is, that I’m not angry at him, I think it’s sad that he would string me along for all that time while not given a thought to how he made me feel and what he was doing.
I’m hurt really hurt by what I was shown, to be truthful I’m devastated to say the least.
The news broke the remaining part of my heart. It truly now is beyond repair.
But I am most angry with myself for letting him in to my heart, for falling helplessly in love with him, for giving him the power to destroy me.
I hate myself for that, I will NEVER let anyone do that to me again EVER.
But you know what sucks big time, I still love him and I always will.