One Step Forward, Two Steps Back

Last night, when I knew my body now needed to rest, I felt the over coming feeling of my all too familiar chest pains. The kind of pain that resulted in being in hospital, both last time, and the time before that. I felt my body become weak. I felt it freeze up. I felt it all, as I lay there unable to help it all, and I let it happen.

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I looked back on the morning I had. I thought back to the first time I have seen the ocean in a month. I thought back to how I was able to sit in the sea breeze with one of my favorite people, and I thought about regretting it, I thought about wishing to take it back, especially now, with my body crumbling like this, in this moment. And I thought about it a little more, and decided I wouldn’t change a thing. I wouldn’t, nor couldn’t exchange the moments my chest got to breath fresh air for a moment without chest pain now. I wouldn’t exchange the many moments of laughter for the few seconds of tears now. I wouldn’t exchange the milestone of being able to go out with a friend (and not see my doctor) for the first time in a long time, even if it meant being set back now.

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You see there is a fine line of what you can and can’t do when you are left somewhat unable to function. So you limit things, you limit how long you stand, you limit how long you talk, you limit who you see, and mostly you limit what you do, and where you go.

So on those good days, on those days where you feel as if you can stand a little longer, even if it means walking a little slower, you can talk a little louder, even if it means people are listening, you last a little longer, and for the shortest amount of time, you feel normal again. You feel okay again.

I can’t begin to explain to you what that feels like, to feel normal again after months, weeks, and endless days of feeling as if you are incapacitated.  But just like Cinderella, the clock strikes twelve, the magic wears off, and you have taken one step forward and two steps back.

You end up back in the same bed, feeling as if you did three days ago, before you felt yourself slowly improving. You knock yourself back kid, it happens, but at least you got to laugh, at least you got to smile, at least you got to see the sunshine and breath the fresh air before those moments were taken from you.

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Like I said, it’s a fine line between doing what you can, and doing too much. While I’ve always been a firm believe in ‘listening to your body’, granted, I’ve messed up multiples times and henceforth ending up here, sometimes even though your body screams ‘no’, you take that little piece of energy you have, and you walk out that door because every single inch of your heart, of your soul, of you sanity is screaming ‘yes’.

I definitely don’t have it all figured it, and honestly, nor do I expect to, but a few moments of sanity, go a long way for a lonely girl glued to her bed.

Until next time,

I’ve attached a little recording of a song I wrote a few years ago called ‘tired’ take a listen. Please don’t mind the dodgy quality.

K x

A Day In The Life / Invisible Illnesses

To fellow POTSies, this is for you.

“I understand.

It’s starts off slow, one by one you slowly start to notice changes in your self. Less energy, less thinking capacity, more sleep. You slowly start to wonder about your self, but you’re probably just exhausted… despite how much sleep you have gotten recently.

It starts slowly, and then comes all at once.

That’s the thing about invisible illness’s, you never see them coming.

You end up in the emergency room, you’re not overly sure what’s wrong; but every time you stand, you faint and for the life of you, you can’t get your heart to slow down. It aches in your chest, you ache in your bones.

There are lots of questions, and quite usually lack of answers. So you lay there, being poked, prodded and praying for an answer to this misery.

Sometimes, if you really hit the jackpot, you will meet a doctor that knows what POTS is. They will be familiar with the symptoms and recognize them in you, and it will feel so so good to hear them say the name because suddenly it all makes sense. But like I said, this is based off the one and only chance you hit the jack pot.

In other circumstances, you will explain why you’re there over and over. You will tell each and every nurse how awful you feel, what happened and hear yourself ask why. You’ll listen to them as they explain it all again to the next nurse they’re handing over too, or the doctor that has come to see you, and more often then not, they will look just as confused as the one before.

That’s the thing about invisible illnesses, no one ever sees them at all.

So you’ll have tests, you’ll have blood tests, and have several ECG’s at different times, you’ll have echograms and anything and everything that might show an answer. But they never do, and the doctors and nurses stand in front of you, as confused as they were to begin with, which to be noted, is not their fault at all.

They can not know about something, they have never been told. That’s the thing about invisible illness’s, they have to be taught.

So you go about life, as much as you can.

A little differently now though. You quit everything extra in your life, hobbies, gigs, anything that takes away the energy you need.

You stick to what you need. You don’t drop uni because you’re too far through now and you need to finish this.

You haven’t been to class in weeks, you haven’t been anywhere in weeks in fact. You’ve been in bed everyday for the past 15 days in a desperate attempt to finish your assignments from home, knowing full well that your brain isn’t going to cooperate with you for much longer. So you don’t get out of bed on this day either, knowing you need every single piece of energy devoted to thinking, and completing this assignment before the lack of blood going to your brain clouds your judgment.

A few days later, you need to go to class today, it’s compulsory. You made a point of showering the night before to save any extra energy for today. You don’t waste energy on makeup, or anything to make you look more presentable, you put on the clothes closest to you.

You’re not allowed to drive at the moment, so you go through the list of family members who might be able to drive you and ask them kindly.

The walk begins from the car park to your class room. You walk slow, and you wonder what everyone is thinking. Is she lazy? Is she unfit? She’s so slow. So you stand to the edge of every path way and hope no one asks you why.

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Each slow step is a desperate attempt to get closer to your destination, and to keep your heart beat at an okay speed. You pray you’re going to make it there, without fainting or feeling your heart run at a million miles an hour.

Ten minutes later you’ve finally made it, but this means you’re late. You watch as everyone stares as you walk in, wondering if they have even seen you in this class before. You walk faster to find a seat because you don’t want everyone staring while you walk slow. You quickly regret that fast walk when you meet your seat because suddenly your head is spinning, your heart beat is thumbing in your ear and you need to be present.

Your name is ticked off the role, and the teacher begins to speak. You try to pay attention to each and every word their saying but you have trouble making sense of it all. It took all you had, just getting here. You then notice everyone doing a task so you try to follow along and look as if you know what you’re doing, when in reality, your brain is now in the clouds and your body aches. But you try, and try for a little while longer because you made an effort to be here today.

Until eventually, your body gives in. You can’t quite stand up properly without loosing your balance so you take it slow, politely tell the teacher you have to go, you will complete the work from home, and beg another member of the family to come get you.

That’s the thing about invisible illnesses, the pain demands to be felt.

The rest of the day feels like torture. Everything is a mission, and a big one at that.

You don’t get out of bed for the rest of the day, and fall asleep knowing that you probably won’t for the next few days.

 

And you wonder, if it was all worth it. That’s the thing about invisible illnesses.” 

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Postural Orthostatic Tachycardia Syndrome was first recognized as in illness in 1993. In America, POTS is viewed as such a life crippling disease, that service dogs are trained and are available for POTSies to assist with every day actives. Unfortunately, POTS is not so commonly known in Australia, and a lot of professionals are currently unaware of this crippling disease, which sometimes, for patients, can lead to a misdiagnosis, or perhaps no diagnosis at all. My main purpose for writing these blogs, and raising awareness of POTS is to not only minimize the amount of individuals who are falsely diagnosed or not diagnosed at all, to bring it to the attention of health professionals whose careers would benefit from being aware of the existence of POTS, and all that it drags along with it, but mainly to bring it to the attention of everyday individuals of how much POTS, and ANY invisible illnesses can change a person’s life, even if you can’t see it.

*This post was originally written for a university assignment that shed light to what POTS is and what it is like to live with it. For more information about my health journey click here to view my original post. 

** If you are interested in helping me raise awareness for POTS, please do so by sharing these blog posts, or even simply taking the time to read them and share with your loved one your new piece of information for the day. One more person informed, is one person closer to the person walking around undiagnosed, unsure why they are feeling the way they do. So let’s raise awareness, together, because I don’t wish that loneliness or the uncertainty to if anyone believes you that goes along with it, upon anyone.

For further information, check out My Heart Website  and follow ‘Standing Up For Pots’ on Facebook for similar stories, or their website. 

Please message me if there is anything you would like me to clarify or expand on / any questions you may have.

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Until next time,

 

K

x

 

A Revival

I ask myself over and over how I got back here. I am in a different bed, yet I am still glued to it. I am in a different room, but I am still confined to it. Different things surround me, three years changes a lot, but not everything. How, and why did this come back to me?

I wanted so badly to understand. I wanted to face everyone, when they gave me sorrow and sympathy and tell them that I knew exactly why this was happening. I wanted to have some idea. I wanted to know.

I turned to the man I love, and I asked him.

“Why is this happening to me?”

“I’m not sure.” He replied.

“There will a reason though, right? Something good is going to come out of this, won’t it?”

“I believe it will.”

The truth of the matter is, I have no idea what I am in for. Each day is a mystery in itself, and I am left confused on which emotions to act upon, which ones are temporary? Which ones am I honestly feeling? How much longer do you think I will be able to hold it together? Can I admit that I have been so scared? Can I admit that living it all again, but with so much more is not only unbearable but also terrifying?

Like I said, I’d like to be able to face people and tell them why this is happening to me, but I can tell you openly and honestly that I have no freaking idea. Yet again, I’d really like to hope something good is going to come out of it, something life changing, even.

I keep listening to this one song on repeat, because for some reason when I listen to this song, it is the one and only time I let myself cry. I sing the words over and over.

Whenever you’re ready. Whenever you’re ready.

Can we surrender? I surrender.

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For me when I hear those words, I feel as if I give myself permission to surrender. I allow in the thought that maybe, just maybe I could let down the wall between what’s happening and how it’s making me feel that I’ve placed up so carefully and strategically. So, when I hear those words, almost all of me wants to surrender the battle of keeping up this charade, and for a moment, I do. I let the wall down, I let myself breath, I let myself cry, and I let myself grieve. Although I know this pain, is only temporary.

Alas, the song finishes and I am swung back into reality where I have to be strong. Where, I should celebrate for the good moments, because when I get them, they are so good. Yes, reality, where I am stuck in bed unable to move for majority of the day, in the bad moments. Yet I am still careful not to break. I like to blame my reasoning for keeping it on together based on what other people would think, how they would realize I am not always as optimistic as I may seen, scared of them seeing how terrified I am. While all this is true, it is also granted that I am so scared that if I fall I may not be able to get back up. If I crack, how will I put myself back together? How will I know how too? But I have done it before, I can do it again.

Falling asleep every night in those hospital rooms, felt so lonely but every moment I was there, I knew I was not alone. Every morning when I would wake up to more tests, and checks, I didn’t doubt that I was alone. Or at night when I was awoken by nightmares that shook me, I didn’t shake on the fact that I wasn’t alone.

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I guess my point is, if even in my loneliest moments, when I am being doubted, poked and prodded, I didn’t loose hope, which means I can’t loose hope now. Not now, not ever. I am not sure if I am close to the ending of this chapter, but I know every day I am getting stronger, even if it doesn’t feel like it. Besides, the end is just the beginning of something else, is it not?

I am scared that if I cry, and grieve, people may perceive that I am loosing hope. No, this is not true.

The hope is there, and every time I say “Today I am getting stronger” I am not referring to my body, although each day I rest it, eat day I take care of it, I know that it is, slowly getting stronger again, I can feel it in my bones. Yet, I am referring to my hope. I am referring to the fact that another day gone means another day closer to God, healing me, like I believe He will. Another day of me writing about how I feel, about what happened and what is happening, is making me stronger. Although, my body is weak, I am not, and that is something I can never let go of, that is something I was always hold on too.

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I also want to encourage you, for even in your loneliest moments. In your hardest moments, granted life can throw a ton of them, to find the hope in it, because you’re not alone, and you’re going to make it through this.

Until next time,

Say something sweet.

K

x

M.I.A // Why? (An Overdue Explanation)

As some of you may or may not have noticed, for the past month or so (disregarding this past week) I have been very much M.I.A, and no, not just from this blog, from everything.

Alas, the overdue explanation.

When I was in New Zealand a few weeks ago, I picked up a virus, which ultimately resulted in my health slowly decreasing in the following weeks. At first it started with me being too exhausted to get out of bed, even for uni. It started with this about once a week, so I was still part-time functioning at least, from there it went even quicker down hill, and I ended up here.

 

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In hospital, 8 o clock on a Sunday night. I remember driving past my church as my mum drove me to the hospital, and wondering what they were praying for tonight.

Struggling to breath, to walk. I stumbled across the road with my mum holding my arm, to keep me up, heading toward the general hospital, where I was admitted instantly. My chest is in too much pain, and my heart won’t slow down. My mother, the doctors, the nurses, are trying to talk to me but I can’t hear them over the own sound of my heart beating. I just want to breath properly, please. It wasn’t long until I had all sorts of wires, machines, and needles attached and inside my body. They hurt, but I knew they were helping, and if they found the answer, this momentary discomfort would be more then justified.

Nor would I let some temporary pain, bring me down. So instead of crying away the pain laying in the hospital, I focused on smiling on every single person that walked past me. Which probably made me happier, then it did them, but let me tell you that it got me through the night. That, and the doctor, and nurses that were so kind, and gentle to me. I think anyone that works for emergency services, deserves a round of applause, at the end of every day.

Six smiles later, I stumbled upon my favourite smile walking in to the hospital room.. (curtain) I was in.

“What are you doing here?” I asked, although overly relieved to see my love right beside me.

“I had to make sure you were okay.”

“I look awful.”

“You look beautiful.”

You should note, that I did in fact, look awful. I mean, do hospital lights and wires look flattering on anyone? But his gesture, and words warmed my heart.

He sat for a while, and laughed with me. I won’t forget his face… Every time I laughed, I would watch his face go from a content smile to a concerned frown when the machine would start beeping next to me, as the pace of my heart would begin to race.

He would then look to me, and beg me to stop laughing.

But how could he sit right next to me, when my heart is so full of love for him, and expect my heart not to race when I’m looking at him?

He had to leave not long after, and I was told they wanted to keep me over night. Then, I cried.

They wheeled me off to the over night observation area, and I begged my mum to stay for a while longer, (not that she would leave me anyhow).

The nurse then butted in and said “You’re a little old to need your mum to stay, aren’t you?” I rebutted that a girl is never too old to need her mumma.

I slept on and off, between blood pressure and water checks, until about 1am when my mum asked if she could take home, and the nurse was satisfied that I was in a stable condition, so let us go home.

The next week was followed by several ’emergency’ tests, and appointments. I lost count to the amount of times I ended up with these all over my chest.

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I must have scrubbed every shower to try and get the marks off, yet every few days a fresh batch would join the remains of the last.

Until the cardiologist appointment, meant finally the end of the ever lasting tape remains, and some answers.

Long story short, when my immune system goes down (which it did, in repercussion of the flu in NZ) my body sort of forgets how to function. My stomach, my blood pressure, everything that works automatically, suddenly has trouble, and I struggle.

Which unfortunetley, results in POTS, as well.

Postural orthostatic tachycardia syndrome

You see, my blood pressure is so incredibly low, yet when I stand up from laying down, it drops even lower, causing my heart to jump from a regular speed to an ‘I just ran a marathon’ pace. It picks up its pace so rapidly, because it is trying to pump blood back up to my brain, that is all quickly heading down to my legs, and feet, all because I stood. Which unfortunately, results in head-spins, and the one I’m trying to avoid – fainting again.

Walking, is no easier, not to mention exhausting. As you can imagine, everything I said above makes my body struggle to do pretty much anything other then lay down, where it is safe, in a constant place.

Walking up the stairs in my own home is my biggest mission, because each step means the quicker my heart will race, and the weaker I feel, the dizzier I become. I only ever use them when I need now, because the pain it causes my body is not worth it.

Showering, is some-what scary, therefor has since become a two person job. My mum will sit in the bathroom while I sit on the shower floor attempting to wash my body without fainting. Heat lowers blood pressure even more so, meaning the shower is a danger zone. (I’m a badass, I know) The scary part about showering, is not the showering itself, it’s the ‘attempting to stand back up’ after I’ve showered and attempting to convince my y body not to collapse, not here. This is where my mum steps in and holds me up till I am strong enough to walk myself back to my bedroom. Most days, this is my biggest task.

Unfortunately, due to the lack of blood reaching my head (Due to standing, blood falling, as I explained earlier) not only am I left with unbearable migraines, but at times, brain fog. The first few weeks out of hospital, I wasn’t able to do any uni work, how could I when I couldn’t think properly?  There was so many times when I would have to say to someone, trying to have a conversation with me “I’m sorry, I am listening, I just can’t respond to you right now.” Even small conversations, became exhausting.

To put it quite frankly, It is infuriating when not even your brain will respond.

These last few weeks have been a blur of, showers, struggles, Gossip Girl, and a whole lot of sleep. Even after the littlest tasks, my body would be exhausted and I wouldn’t be able to keep my eyes open. This is not an awful thing however, it is my body trying to heal itself, that’s what I’m trying to do, let my body heal.

Alas, I am left with salt tablets and electrolyte drinks, which together will help balance each other out to raise my blood pressure, (which are helping, especially with the brain fog. Which is why I can sit here, right now, and write to you.) I am left with tablets to help my stomach process and digest food. I am left with panadol for the aching in my chest, this is because the wall that my heart beats upon is pretty warn down at the moment from being so harshly, and often beaten on. So I’m trying to take it easy on my heart, on my body, and not cause anymore trouble.

Because hitting rock bottom hurt my body like hell, and I never want to do that again.

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One of my best friends told me that quote, and I never forgot it.

 

The point of this post was not to create a sob story, or to lure sympathy for myself. The point of this was to for two reasons.

  1. If you don’t see me around, if you don’t hear from me, this is why. I am resting, attempting to get my body to function again, and while I can’t attend university at the moment, I’m trying my hardest to complete all my work at home, when my mind and body allow me. Lucky for me, I can feel my body slowly getting stronger, although somedays are worse then others. Like my boyfriends mother (and my friend) over at the Keep In Mind Project,  always tells me, “spend those coins wisely” and boy oh boy, am I trying too.
  2. This is not the first time I’ve had POTS. No, unfortunately I had it as a younger teen for two and a half years, resulting in having to withdraw from school at the beginning of grade 11. I am so passionate about sharing about POTS, what it is, how it effects a person, because it is so common, yet so many professionals and people are still so unaware of it. I had to live with this disease for two years before anyone could give me a solid answer, a real diagnosis. Unfortunately, for POTS, there is no cure. But I sure as hell am not going to stop trying to raise awareness for it, despite the lack of cure. Because attempting to live, at least knowing what is affecting your body is a sure as hell a lot better then having to explain to everyone that ‘my body is not really cooperating right now’ and no one really believing you.

One thing I will say however, is that the world is progressing. There is a lot more websites, and information about POTS then there was 3 years ago when I was diagnosed for the first time. Click here to take you to a website that it explains all about it, from the doctors and patients, and join the Standing Up For Pots motion on Facebook, or visit their website for more information, because I can’t tell you how good it felt, sitting in the hospital room, to hear the doctor say the name POTS, and to know exactly what it is, and for someone to believe me.

So share, raise awareness for this invisible illness, to save someone else the pain.

There will be more on this to come.

P.S. I am so grateful to all my friends and family for words of support, and love, in this time of need. I am forever grateful for that God gave me you.

P.P.S. If it wasn’t obvious in the text above, my mum is a rockstar.

Until next time,

Do something lovely.

K

x

 

8 Things To Look Forward To, When Your Best Friend Moves Home. 

My brother has been living in Melbourne, (which is several states away from me, for reference) for the past few years. He moved as soon as he graduated high school, at the tender age of 17. Now, at the pinnacle age of 21, he’s finally coming home. & I couldn’t be happier.

So I made a list of just a few reasons, I can’t wait to have him back by my side, and be up to mischief with him again. After all, a sibling is a life long friend.

 1. DATES. They go on dates with you. Whether it’s a “we both slept in way too late, let’s find a place that does all day breakfasts” kinda date. Or a “I’m taking you out to lunch and showing you how a man should treaty a lady” kinda date. Which my brother did a lot for me growing up. So now I’ve got great standards, and a great guy that meets them. In my books, these kinda dates are the greatest.


 2. SPENDING TIME TOGETHER. Whether it be picking on each other, stealing the tv remote, or going on crazy adventures with each other; at least you’re together. Don’t wait until your sibling is on the other side of the country to finally realize how much you love them and miss them. Focus on the good times first and always, even when they’re annoying as hell. 😇

 3. LATE NIGHTS. Out of our parents, other two siblings, and two sibling in laws, we both know that the sibling most likely going to be the only one still awake at this hour, willing to answer your call, is out of us two. Whether it be to plead a case to come pick you up, when you’ve had a drink and can’t drive home, or, you’re having too much fun out dancing so you need your sibling to make sure the side door is unlocked for whatever time you may get home, without waking up the parentals. They’ve always got you covered.

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 4. LAZY MORNINGS. Ah yes, the lazy mornings which tend to arrive after the finale of the late night. These are some of my favorite memories. Whether it be, both waking up starving, and attempting to convince them to cook you breakfast, to no avail. Instead you both end up in the kitchen cooking some random combination of food to fill all your wants and cravings, while listening to your new Spotify play list and trying to avoid the “whipping each other with tea towels” game, because you’d loose, for sure.


 5. HONEY, SMILE. Not only will they go on any kinda adventures with you, they will also second as your personal photographer, AND be willing to pose in photos with you, if you ware them down enough… plus, who doesn’t love cheesy sibling photos?! I know I do! 🙋🏼


 6. THEY’VE GOT YOUR BACK. At all times, on all days, no matter how far away they may be, they’ve got your back. They will answer the late night “help me” phone calls, or the 5pm “I had a bad day at work” phone calls, or my favorite, “hey, I’m trying to convince mum and dad to….” kinda phone calls. They’re always there; even if they’re half a country away, and quite frankly, I wouldn’t trade my brother & best friend for the world.

  1. Being apart, sucks. and you both know it, which is why we need as many images with “I hate being apart from you” faces. You both understand the need for ‘quality’ photos. But soon, there will no need for them, because he’s coming home.

8. NO MORE WAITING. Never again do I have to wait 3-6 months for a desperately needed brother hug, from my best friend.

It’s for all these reasons, and so so many more that I can’t wait to have my brother home in a few days. I’m counting down the days.

Until next time,

K.

X
P.s. Please don’t be offended other siblings, I’ll put it on my “to-do” list to write a blog post about how great you guys are too 😇

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10 Tips For Being A Good Friend

Good friends are hard to find these days. But when you do search high and low for that quality person, you’ll want to hang onto that friendship. However, it goes both ways. A friendship can hardly flourish if it is just one sided.

So, I sat down with my lovely life-long friend Elly-Grace, at Dancing in Violent Fields and discussed what it means to be a good friend.

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  1. TAKE THE TIME: Taking the time to listen to each other’s Spotify playlists, knowing full well their blood and sweat went into creating their own little slice of heaven.

 

  1. VISIT THEM: When they’re sick, and provide any sort of comfort food. They will remember this next time you’re sick.

 

  1. BE NATURAL: Be raw with them. Make sure you give your friends the privilege of knowing the real you at all times, even if it drags a whole range of emotions with it.

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  1. BE HONEST: Call them on their shit. It’s 100% okay that if you feel they are making a crazy life decision to pull them up on it. However, when they’re being over emotional, let them cry and rant to you as well. Sometimes you might not have the wisdom to give to them but they will find it comforting just knowing that you are listening.

 

  1. ANSWER CALLS: Answer their Skype calls or phone calls when their overseas and need your help ASAP and be willing to spend hours on the phone with them talking about every situation with them, and wishing you were together again. We get it, everyone has busy schedules so if you can’t answer their calls then just send them a message saying you’re thinking of them. It’s simple.

 

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  1. SUPPORT THEM: Celebrate with them. They’re victory is your victory. Seeing them happy makes you happy. So make sure you show it.

 

  1. SHARE: What’s mine is yours. Be so comfortable around them that there is no boundaries and what you can and can’t borrow and share…just not boyfriends.

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  1. LOVE THE FAM: Treat their family like you’d treat your own. Ask about them, because almost instinctively you already care about them.

 

  1. DON’T BE OVERPROTECTIVE: And don’t be overly clingy. Be happy in who you are, and your confidence that the friendship makes you both shine – not one of you hiding behind the other.

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  1. ESCAPE WITH THEM: They will escape with you when you feel the need to get away. Even if it’s just to pick you up for an ice-cream or a long road trip. They will be there.

 

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Let us know your thoughts!

 

Until next time,

 

K x

 

ABOUT DANCING IN VIOLENT FIELDS Dancing In Violent Fields is a lifestyle and travel blog for souls seeking inspiration. Elly-Grace is usually daydreaming about a Greek Summer so she writes as a means of escape. She often struggles between the need for travel money and the battle of wanting to spend money on coffee dates

Elly Graces;

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Image Credit; Shelby Campell