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.

IMG_7953.JPG

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.” 

IMG_7731.JPG

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.

IMG_7572.JPG.jpeg

Until next time,

 

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.

 

FullSizeRender.jpg

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.

IMG_6698.JPG

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.

large.jpg

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