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

The Raw Truth (M.I.A part 3)

What am I suppose to tell you? What am I suppose to say?

How do I explain that I spent four days in hospital, to end up with this.

How do I equate that four blood test, five ECG’S, three cannulas, an x-ray, an endoscopy, and echogram add up to a lack of results.

While eternally, and overly grateful for the health system,  how do I mention I am still left with nothing to tell you?

Four days, bruised hands, and no longer high in spirits.

I should be grateful. I should be so very pleased because; no news is good news, right? That’s how the saying goes, isn’t it?

I should be over the moon because my heart is okay, structurally, and is that not reason enough to celebrate?

Am I being selfish for wishing that they would have found an explanation?

There is nothing to show as to why my stomach is not processing, so that’s helpful, right?

I know my body can function;

So why isn’t it?

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I am left with negative results, and more questions then when I began. How is that even possible?

I guess it all comes back to Dysautnomia; the fact that my body tries to cooperate but physically can’t.

I don’t have much more to tell you, despite the fact that my body does so many things that I can’t quite explain to you, because I can’t quite understand them myself.

So this is me, giving myself permission to not quite get it, permission to be mad, and frustrated as hell. Permission to be completely and honest with you because I can’t continue writing these posts without you knowing everything.


So full disclosure; it’s awful.

But, with every inch of my aching body I know that there is a reason behind this and a purpose for all of this.

In times of sorrow, I choose not to believe that bad things happen to good people, or that the devil had this planned all along. No, I choose to believe there is more to know, more to learn, there is a reason and purpose. God is teaching me, He is guiding me to something that I can’t foresee.

So I walk blindly, and follow Him.

Even though I am at landslide of questions, and a lack of answers. I choose to believe.

In the truth of full disclosure, I do not write these words for sorrow. I do not write them for sympathy, I write them because these are the questions that occupy my mind when my body aches and mind can’t think straight.

So I write, and I write to keep myself sane. And I wouldn’t feel right, writing to you to tell you that I am okay, when the truth is far too valuable to jeopardise.

So full disclosure, full honesty, and full faith that God has healed me before – I don’t doubt that He will do it again.

Although so much of me struggled to write this – fully acknowledging that it is so much easier to write a series of events then it is to write about how it made me feel, I can’t let this go.


Until next time,

Take a listen.

K x

How I Scored Two Ambulance Rides In One Night (A Continuation Of M.I.A)

To put it quite frankly, (although never having met Frank, myself) when I posted my M.I.A blog post about my health, and stated that there would be ‘more to come’ about this topic; I didn’t quite imagine this. 

You see, in my mind I had more of a picture of explaining what it was like to have POTS the first time, how I was forced to leave school because of it, to save my health, although never having ended up in hospital the first time around.

This time around, apparently things are a little different. Twice in the same month.


You know that saying; “third times the charm”? Let’s not say that about this, because I’m kinda planning on getting better and stronger, if my body will continue to cooperate with me, like it was… until 16 hours ago.

Having had an incredible two days, with energy and clarity of thought. I was able to somewhat function as a normal human being; which again to put it frankly… Felt. Bloody. Good.

These two days were so good in fact, that I went to sleep on the second day, thinking that when I woke up in the morning, I would be lucky enough to attend my university classes.

Boy oh boy, I could not have been more off the mark.

When I woke yesterday morning, it was safe to say that I knew I wasn’t in for another ‘good today’ and if I pushed myself, my body would reject the attempt and decline even further, as a consequence.

Therefore deciding that it was a good day instead, to stay in bed and binge watch Jane The Virgin (thanks Netflix) while my brother would occasionally interrupt me by showing me everything he’s brought home with him after his big move across several states. Finally, home with me where he belongs.

If you’re wondering about my brother, and what our friendship is like, check out my earlier post “8 things to look forward to you when your best friend moves home.”

It was going well. I was resting. I had the attention of one of my favourite people in the world, and I could feel my body thanking me for going easy on it. There is nothing like knowing you made the right decision.

Until not even that, is enough.

As I lay in the comfort of my own bed, I could feel my heart begin to ache. Slowly, and gently at first. I changed position several times in order to get comfortable; to no avail. I took some panadol to ease the pain.

Yet I could feel the ache grow. I then tried sitting up and laying back down several times in a desperate attempt to ease the pain that was rapidly rising.

I could feel my heart racing, faster and faster as the pain across my chest spread further and tighter.

I tried several times to stand only to be knocked back.

Eventually, I gave in. I called my parents and cried. Within 10 minutes, I was no longer alone in my room with this pain. No, I had my mum, dad, my mums receptionist (another mother figure in my life) and two paramedics standing next to me.

They placed cords all over my chest, a task I have become familiar over the past couple weeks.

It is to be noted, that as this point, my cat (who has a knack for looking after me when I’m sick, mainly just with cuddles) comes howling in. Sniffs around the paramedics, and everything that was attached to me, and deemed them trustable. Honestly, whom needs a guard dog when I have an “I got your back” cat.

With the pain settling, and no unusual results found by the paramedics I assumed that I would just be left alone with painkiller and sleep on my agenda. Oh boy, was I wrong again.

“You don’t mess around, when it comes to your heart.” My mum says as she walked behind me to the ambulance, while my dad held me up by holding me up on one side, and my brother, the other.

Keeping me stable, and strong when my head spins and body gives way every few seconds. I was then waved off by three of my favourite faces, and knew mum was following close behind.


 The ride felt long, but bearable since my pain had settled.

The paramedic sat next to me asking me lots of questions about my health, I was able to share with her the irony of the fact that only the day before I had posted about my last trip to the hospital, and how I was on my way to recovery, or at least I thought, and promised her she would feature in my next post.

I told her that I thought anyone who works for emergency services, deserves a round of applause at the end of their day. She laughed, “That would be nice.” 

Well, this is my round of applause for you Jill. Thank you for not only constantly checking on my while I was in your care, but also talking to me as a friend and making me laugh constantly. I am delighted to have met you.

Not long after, I departed from my new paramedic friend and was admitted in the emergency ward where the usual procedure began.

First, ECG’s which would stay attached to me till I was discharged. Next, oxygen check. Then, blood pressure check, and of course, what would a hospital trip be without a blood test, oh, and a cannula.

The next 8 hours consisted of the first three of the original checks cycling, over and over. Attempted naps, countless bored snap chats and painkiller filled in the time.

 

Till I got the news that tonight would not only be the night I would have my first ambulance ride, but also my second. It was time to be enroute to the next hospital (that had more beds). The paramedics for my second ambulance experience filled my trip with dad jokes, and attempts to teach me little fun things. I don’t mean to brag, but I now have my licence to use a medical thermomotor…

Alas, it was 10 o’clock at night and I had reached my final destination, for the next few days at least. I was / am very grateful for a private room to say the least. It was most definitely time to rest.

I was woken up several times over night for scheduled checks, as well as an ECG monitor attached to me again.

But the best part about waking up this morning is that my parents were already here to see me, sit and wait with me. Despite the fact they hare taken time away from their own business’s to be here with me, knowing they will have to make up for that lost time later.

 

Today I’ve had another blood test (which makes a total of 3 in the past 24 hours) as well as an Echogram to check my heart. Oh, and a chest X-ray last night. I think it’s safe to say I am in more then safe hands, and I have lots of people attempting to get to the bottom of it for me, and assisting with the pain along the way.

In reference to my last blog post, where I stated that sometimes when my immune system is down, everything that works automatically kind of stop working all on it’s own? Well it’s called Dysautonomia, and POTS (which I explained in my last blog) is a repercussion of it. So it is not unusual for these two to walk hand in hand.

Unfortunately, due to the Dysautonomia, my stomach is not currently cooperating at the moment, despite several types of medications that would usually do the trick. Therefore, more tests, which mean eventually more results.

 Alas, back to the chest pain. Due to POTS, my heart has been rapidly racing at a high speed for quite some time now. Unfortunately this mean that the sack surrounding my heart has become quite worn down from being so constantly beaten upon resulting in the severe chest pain. This infection is called pericarditis.

I don’t currently have all the answers to all of your questions, because I am still due for more tests, and in the process of waiting for more results. However, I have been started on medication for the Pericarditis, to help heal it, as well ease the pain. They are investigating my stomach, tomorrow I will know more after the endoscopy.


Now, I sit, and wait. (and pray for no more blood tests) & thank the heavens that I have so many beautiful family and friends who have sent kind words and constant check ins to see how I am.


 Again, totally and completely grateful to all the nurses, doctors, and paramedics who have used their time to make sure I am okay. I have nothing but respect for your profession.

“Although I walk through the valley of darkness, I shall fear no evil.”
Until next time,

Much love,

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

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