Flashback Friday

img_3758Times seems to be running away so very fast, I can’t believe it’s nearly November and Christmas will be here before we know it.
Weeks seems to fly by and days just seem to blend into one another.
Friday has come around so fast which means the weekend will only go faster.
Life seems to be on fast forward with days getting busier and busier.
I really don’t know where this week has gone.
Thank goodness for the weekend.
So my week has been crazy busy, with half term, hospital appointments for Mk and I, it feels like we should just move in there.
I saw a new consultant this week and bless her, even though she was running an hour late, she was totally on the ball, she listened and took her time with the normal checks. She also was very interested in my conditions and has ordered CT scans, MRI’s and a few others that I can’t remember what they are called.
It was so nice to feel like someone cared and wants to help.
All in all, it was a good appointment and I came away feeling hopeful.
Not that they will find a cure, but hopefully gather more information and hopefully get my meds under control. She really wasn’t impressed about the amount of meds I’m on.
Marly-Kate is doing great and her team are over the moon with her determination. Only time will tell if this op has helped. Fingers and toes crossed.

So it’s Friday again and that means one thing.
It’s time to reflect on past posts.
I won’t bore you anymore and I’ll get straight to it.
So I give you……

We are all fools, silly fools.

I don’t know how many times I have told myself
” I don’t care”
Every single one of us, have said these three words
“I DONT CARE”
We are all fools, silly fools that have to tell ourselves over and over again that we don’t care.
When we fall out with a friend,
Have a bad review at work,
Miss that one-off great deal on eBay,
Loose touch with a friend,
Put on weight,
Have black bags under our eyes,
Have a roll of skin that rolls over the top of our jeans when we sit down.
Have spots,
The list can go on and on.
We all tell ourselves we don’t care but deep down we do.
We care because in our hearts we want to love ourselves and our life’s.
It’s easy to talk one self into not caring because it’s less painful that way.
How silly are we to put up walls against ourselves.
That it’s easy to try to convince oneself that we don’t care so we don’t have to feel upset or pained by the situation.
Why can’t we just work through our feelings, we are only kidding ourselves if we don’t.
I’ve told myself over the last year and a half that I don’t care but I do, I care more than I will let myself admit.
I care that my face is always red,
I care that my weight sores and falls.
I care that I get called shorty.
I care that I’ve lost close friendships that I so want to get back.
So why, why do we do it to ourselves.
I guess we are trying to protect ourself.
But are we?
Are we really doing that?
Or are we building up something so much more painful.
I know that I have always shut things so deep that I pretend the feelings are not there.
Take my friend’s death for one.
I blocked it out, I told myself over and over that he wasn’t gone and I could call him when ever I wanted to, but I didn’t want to.
God I wish I could, but there is no way I can because I have to live up to the fact he’s not here.
I just don’t want to say goodbye.
The same with my dream job.
I tell myself that giving it up was easy, which I guess it was when I had the reason to give it up, but now, it just brings me pain to think I throw it away for love.
Once again I tell myself I don’t care, but boy I miss it.
I miss listening to music, and proving to myself I’m worthy of the roll.
But in the same breath, I know that at the time, walking away was the best thing, the best reason to leave.
As for friends I have pulled away from and tell myself I don’t care.
OMG I do care, I miss them, I miss them every day.
I long to sit and chat and just be myself with the people I care about.
As for looks, can’t say I’ve ever wanted to slap a load of make up on my face to feel better about myself, I’m a firm believer that beauty is soul deep.
But something niggles me, I look at myself and just see this grey face, with no life in my eyes and these glowing cheeks that make me want to hide away from the word but I tell myself I don’t care, I really don’t care what people think I look like.
But of course I do.
We live in a world full of judgement, and of course we all want to fit in, we want to be excepted.
So those strong powerful words
” I don’t care”
Are the biggest lie anyone had told. Along with the words
“I’m fine”

As they say

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As they say, a ship is safe in harbor, but that’s not what ships are for. (This was one of my mate Porters favourite quotes)
Accepting some level of risk in life is important.
You cannot be both close-minded and wise.
You have to open up to the unknown. Close-minded people who pretend to be wise to the ways of the world are mostly just cynics.
Cynics always say no.
Do the opposite.
Saying yes begins things.
Saying yes is how things grow. It leads to firsthand experience and knowledge.
Yes is for strong, open-minded people. So for as long as you have the strength to, say yes.

Take a little

img_3738In order to gain conscious control of what goes on in your mind, you need to develop a keen awareness for the process.
What helps is to hold still for a moment, take a deep breath and free your mind of all the chatter that’s going on inside and all around.
This makes room for a change of state, for something new to enter.
So give yourself a break. Yes, you have battles out in the world to fight, insecurities to overcome, loved ones to contend with and goals to achieve, but a break from it all is necessary.
It’s really is perfectly healthy to pause and let the world spin without you for a while.
If you don’t at least try, you will burn yourself out.
You must refill your bucket on a regular basis. That means catching your breath, finding quiet solitude, focusing your attention inward, and otherwise making time for recovery from the chaos of your routine.
Take a little me time to try to find yourself once again.

Flashback Friday

img_3731It’s Friday.
While others get ready to finish their working week, I’m sat in the sun, taking in the cent of the bonfire, listening to the flowing steam and watching as the dragonflies dance.
It’s such a beautiful day. I’m happy just watching the world go by.
It’s been a chilled week and I’m starting to feel my energy levels return slowly, my head aches less which really couldn’t come fast enough.
Yesterday was a little harder than most, being my beautiful cousins anniversary. I can not believe it’s a year already. She is missed so deeply.
Everything seemed to remind me of her yesterday, which pulled on my heart.
I’m watching a box set at the moment which gets better and better by the day. Yesterday though was a storyline of cancer and in true honesty it made me weep, which couldn’t have come at a better time as I feel so much lighter today. Tears really can be a good thing and will I do not let myself cry normally, it was a welcome release.
Somehow though tears always start out over one thing but soon every possible emotion comes into play and I end up breaking my heart over the two things that have shattered my heart and soul. When those tears come it’s not always easy to stop and compose myself.
But all in all, I needed it more than I knew.
Life is so very cruel but I know it also can be beautiful.

So the time has come to rewind time and look back at older blog posts.
And here you have it………

Notice once again.

As the days are drawing in I can’t help but notice the beauty of the changing seasons.
Colour is every where, the trees are a light with the flames of Autumn, change is in the air as the breeze helps the crisp leaves dance as they fall.
There really is something magical about the way they dance and spin to the ground.
Somehow it just calms me and opens my soul to the delights of living.
As I feel my temperature drop, I can’t help but just sit a little while longer and take in the calmness of nature, the joy of my puppy and my little girl with her glowing cheeks, chasing the multi coloured blanket of fire, that spirals around their ankles.
With all the misery that’s in our world, how can something so simply delightful be over looked.
With the warm summer days far from mind and
my favourite season waiting just out of reach, I find an inner peace knowing that no matter how ugly the world is right now, if you just stop for a moment, breath and look around you, you will see that not everything is ugly with this world, you just need to pause and notice once more that the magic of life is all around us, dancing, floating, shimmering. We just need to once again notice.

Just a little

img_3692Just a little update from Fridays flashback post.
Well we decided to take a little trip while Marly-Kate recovers and I try to shift this mother of all headaches.
As normal peace consumes while I relax by the open fire, read, craft and watch endless box sets. It really is what the doctor ordered but as always something is missing.
Marly-Kate is doing the norm and not letting her health keep her down, but she is being very sensible with it and knows her own limits. She is happy just being here surrounded by green fields, animals and her second favourite person in the world, who hangs of her every word.
If she’s happy, than I’m more than happy.
It so peaceful, the one place I can listen to my thoughts, I mean really listen, I can let myself learn all about what my heart and soul are telling me.
There is something very special about that.
It’s pretty busy here, people living there life’s, not just to survive, really living.
Having that round me reminds me that finally there is a place I could call my second home because I never had a place which truly felt I was at home, until I was with the love of my life.
He was home. 🏡
My comfort, my warmth, my ease, my security, my happiness, my sunlight, my moons and my stars ✨ . Everything I mean every tiny thing that matters, all rolled into one.
I guess this is the second best thing which is kinda awesome because I like it here. I guess you can call it my run away but I will call it my home from home 🏡

Sadly though it’s not all such positive news.
My great-aunt has found peace and is now flying with my angel 😇
At lease she is at peace now and reunited with her one true love, her soul mate, her everything. Now that’s got to be worth it, right ?

Flashback Friday

It’s Friday and I’m more than thankful that this week is coming to an end.
I’ve had the mother of all headaches all week, well nearly two weeks now. 🤕
Even sitting with candle light, my eyes stream and ache like I’ve never experienced before. The pain has driven me to bed at my earliest convenience because darkness seems to be the only thing that could help, morphine just didn’t touch it.

It’s been a hard trying week with my baby girls op and my great-aunt being rushed to hospital which heartbreakingly has the worst outcome.
We now have to play the waiting game. Bless her though, she’s had good innings, she turned 91 this week. She’s had a full life, a kind heart and she spent her life with her childhood sweetheart. I’m sure she will pass a happy lady.
It’s just so heart wrenching for the rest of us.
Marly-Kate is proving that once again she is a fighter and doing so well after her surgery, she’s still smiling, laughing and enjoying all the attention she gets none stop. Bless her cotton socks, she sure is a trooper.
I’m so hoping that this will help her have a normal life and that she won’t have to have open heart surgery. Please keep your fingers crossed for her.
Work just hasn’t happened this week but while sitting at the hospital for hours on end. I did manage to complete an afghan that I have been working on and in all honesty I’m proud as punch at the finish project. I think I’m going to gift it to my great-aunt so she has a little comfort in her final days. 🎁

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All in all, it’s been a hard week and rest for both Marly-Kate and I sounds like a good plan.
I’ve been missing a certain someone more than ever this week, wishing he could be here with me, letting me know all will be ok, like he use to.
God damn it, I should be over him by now, why aren’t I ? I guess it’s because true love doesn’t fade. It’s forever.

So anyway it’s Friday and that means one thing – it’s flashback time again (sorry I missed last week)
I’m not sure if I have flashed back the post I’m about to share but after the week Marly-Kate and I have had, it just seems fitting.
So here you have it.
Flashback Friday gives you………..

Marly-Kate ❤️

Having a child with health problems is heart crushing. All you want is for them to be as healthy as they can be, for their cheeks to glow and as they grow for them to run and play the same as the other children.
Sadly my baby girl will never have the joy of running freely, taking part in sports day or having a good nights sleep, you see my princess was born ten weeks early and this led to multiple health issues, the biggest being her heart.
Marly-Kate was born with a hole in her heart, failing heart veils, mixed apnea, which is a sleeping disorder, which has caused the most distressing times. She also has a condition called stridor.
So you see life for her is always a battle.
I’m guessing even one of these conditions alone is a challenge, poor Marly-Kate battles to breath with every intake of air into her lungs.
She truly is a trooper an adorable one at that.
Apnea can be fatal in a child. As her breathing stops, the oxygen levels in her blood fall and the levels of carbon dioxide increase. She could suffer a severe drop in heart rate, which is called bradycardia.
Children who have had more than one episode in which they stops breathing are more likely to have long-term complications or die unexpectedly.
So I’m sure you can imagine how stressful nights have been and still are.
Her heart would stop a good few times a night, as her mummy, it is terrifying to say the least.
Every time her alarms blasted out into the still of the night, I am never sure if that was it, would I be able to start her heart beating again, and on the real bad nights as I sat and held her in my arms as I watched her lips and fingers turn blue as she gasped for her breath.
Fear like I had never felt before was imbedded into me.
To watch your flesh and blood fighting with all her might to just receive her next breath knowing you can not do anything but hold her and pray she makes it through the night.
And every morning when she awakes I know that she has fought for all her worth to still be here and the smile she gives is a beautiful heart warming gift but you know that when nighttime falls and she kisses me goodnight and holds her hands out to the photo of Ross by her cot, saying the words I’m dying for him to hear and she kisses him good night as she has done for as long as I can remember now, dread runs through me at the struggle she will be fighting as the rest of the world sleeps and I pray that I will get to see her smile once again.

It’s only when

img_3620Today I honestly felt like my head was going to explode, the noise, the traffic, the chaos and constant chit-chat, the impatience, the rushing of the rat race.
All of it swirling around me so fast I couldn’t keep up and I didn’t want to.
So tonight I am sitting under the moon light soaking up all its energy, it’s so quiet, so peaceful and it’s been calling me all day.
I finally stopped to let my mind escape.
And it’s only when ones soul lifts out of your body even if it’s just for a split second, no weight, no worries just nothing. Floating, hovering around, feeling free. Dreaming and drifting further and further away.
The noise has finally stopped and I’m finally free.

If only a glimpse

img_3621Have you ever walked somewhere and not remembered the journey?
Have you had so much going on in your mind you can’t think straight?
Have you stressed so much you’ve given your self a head ache that lasts days?

Are you so busy in your thoughts good or bad, you miss whats in front of you?
Has your mind been so busy you actually thought you may lose your self there?
This seems to be the story of my life these days.
Blinded by heartbreak, fear of never seeing that breathtaking light that everyone one tells me will come.
If only they could take a glimpse at those broken places just for a minute, they may just reach out and hold my hand and show me I’m not alone.

Flashback Friday

With Friday nearly over and it’s time to try to sleep, hoping the nightmares will give me a little rest bite if only for tonight.
Of late my sister has been haunting my dreams.
As I run around dream land I desperately search for her, never seeing her face and she always out of reach.
All I want to do is hold her and see her beautiful face and hear her brilliant laugh that would turn heads and all would begin to laugh or smile along with her.
I miss her, I really miss her.
It seems like I spend my whole life missing people.

As Friday is just about with us still, there is just enough time to flash back, it’s Friday after all.

So here you have it……

I remember.

I remember holding hands and skipping along the road, singing our childhood songs, siting on the stones by the old pier watching the waves crash against the shore.
Making wishes on the first star we saw.
How sweet and innocent we were back then, thinking we had all the time we needed, that life was endless and we would go on forever.
I remember you being scared at the thunder storms and you running and jumping in bed with me, snuggling in as tight as you could.
I would tell you story’s of princess’s, castle, fairies and brave knights that would whisk you off you feet.
Our dream world was perfect and as long as we had each other, the monsters could not get us.
From teddy bear tea party’s to climbing trees, our adventures were wonderful and as we grow, our bond and friendship became our strength, our hope and our understanding.
Now for what ever reason you’re to good for this world and I’ve lost you, in doing so I lost apart of my soul, but I hold on to our memories and pray that you are safe and looking down on me, looking out for me.
The love that we shared will always be with me and as my silent tears fall as I think of you my baby sister, I smile at the joy and pleasure your brought to my life.
And I will not cry any more because one day, when I’m wise and old I will see you again and we can sing like children, make wishes upon stars and hold hands like we did before but this time it will be extra perfect because we will never be parted in sorrow again.
I miss you, love you, my dear sister.
Watch over me ❤

One wolf to another

I got a message today from my old neighbour, telling me that her sister is being tested for the dreaded Lupus. She asked me for advice that she could pass on to her.
I really wish I had, had someone to turn to when I was told I had it.
Ok I had google but knew that could be dangerous. Sometimes too much information can be more than scary.
For a long time I put off researching because basically I was frightened and in all honesty I really didn’t want to know.
There really is a fine line between knowing too much and not knowing enough.
I finally gave in and researched a little. And I was right it’s all a bit bloody scary. Now if something crops up I will have a quick look but only enough to know what’s going on in my body without scaring the life out of myself.

So without going into any medical talk, (If you know me you’ll know I don’t do all those long medical terms well, why they have to explain things so only superman could understand, I don’t know. Plain simple English will suit many just fine, thanks.) here is my little piece of advice from one wolf to another.

My advice is to rest when you need to but not to give into it. (I have to fight to get up in the mornings because if I don’t it has beaten me.)

A hobby that you can do at home is a great idea as it has got me through some really dark days.

The most important thing is to write everything down, every question, feeling, symptom, etc, etc so that when you see your consultant you don’t forget anything. They are very good at trying to fog you off because they are more interested in clearing the waiting room.

One of your biggest struggle will be the people around you will not understanding what you are going through and expecting you to be able to keep up and do what others expect from you or what you were once able to do at speed. On bad days you simply can’t keep up, I’m sorry but you can’t.
Remember it’s your body’s way of telling you to slow down and rest.

Your life will change more than anyone will notice but it’s the depression that will come with it, that I would keep an eye on.
Having the simplest tasks taken away from you like cleaning your home is so hard mentally and it will take at least 3 times longer to do things. It’s the small things that will hurt your mind and make you depressed.
It’s a cruel illness but as long as your mind is strong and you have a good support network around you that understand that just because you don’t look sick, that you really are.
People can be the cruelest.

I would do your research so you can understand the battles that you may face but too much research is also a bad thing because it’s scary, really scary.

If you are a smoker, than try to give up. I found the best way was to use a vape. It may not make a difference but my consultant kept on and on until I craved in and gave up.

Really though, the best advice I can give is to listen to your body and rest when you feel you need it.

Also a huge one is DO NOT FORGET your meds. Withdrawal especially from morphine is a bitch, I know this too well.
Set alarms, reminders on you phone or any other gadgets you have. My trusty old Fitbit is a godsend for my reminders.

If you are in a state or country that cannabis oil is legal, then research that because boy that stuff from what I’ve heard is a life saver.
There are loads of videos on YouTube showing it eating away at cancer cells. It’s proven to work for so many medical conditions but it’s the same old, same old, pharmaceutical industry that won’t play ball because they will lose too much money. Wrong so very wrong. 😡
But from the stories I’ve read, it’s worth a try.

That’s about all I can think of for the minute. I hope it helps.

One last thing, this article is pretty on the ball and worth a read or a share to help yourself and others begin to understand.

20 Ways Lupus Affects the Body

Stay safe, stay happy and rest.
Toodaloo 😀