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