Postural Orthostatic Tachycardia And Me.

IMG_4682.JPG

What is Dysautonomia? Dysautonomia is dysfunction of the autonomic nervous system. What is the autonomic nervous system? This is a nervous system in the body that controls things you don’t need to think about, like breathing, regulating your heart beat etc.

POTS (Postural Orthostatic Tachycardia Syndrome) defined. Postural, refers to the position that brings change in POTS patients. Orthostatic, caused by the change in an upright posture. Tachycardia, meaning a fast heart beat with 100 beats per minute or higher. Syndrome, a group of symptoms that make up an illness.

Isn’t that a mouth full! Postural orthostatic tachycardia Syndrome (POTS) is an abnormal rise and fall in BP (blood pressure). POTS usually causes tachycardia. For me my POTS can cause my BP to be 161/144 with heart rate of 117, or it can be 80/40 with my heart rate at 120 and higher. This is all caused by me simply standing up.

POTS causes me to experience syncope (syncope means a loss of consciousness aka a black out). When I have a black out, I can not control what my body does. I have blacked out and had a seizer. My body feels weak, and everything literally goes black. When I first started blacking outs it would affect my eyes, my vision would go balcony. I wouldn’t be able to see a thing, but I could hear things going on around me.

IMG_4680.JPG

Eventually my POTS attacks got so bad I was falling no matter where I am when this happens I fall, if I am feeling a black out episode coming on I will not move. To even out my heart rate I will lay on the floor and elevate my legs up a wall. My BP isn’t usually fixed for 30 minutes to an hour. The racing heart can be heard in my ears, my chest feels as though it may explode, I over heat, I sweat, chest pains worsen, the dizzy spells make it impossible to move.

POTS has caused me to full on bail, this is problematic due to my Ehlers Danlos Syndrome. Falling has caused me to dislocate joints, anything from wrist, knees, fingers, toes, jaw, and other painful dislocations.

Days where I can experience black outs I do no venture out as it is not safe for me to do so. Black out days are spent surrounded by pillows and remaining elevated to prevent catastrophe.

As you can see in the photos my blood pressure is all over the map, this is due to POTS. My POTS doesn’t behave like the typical POTS. My blood pressure changes drastically as does my heart rate.

The usual treatments for POTS are: increasing salt, increasing fluids, electrolyte replacement, calcium channel blockers, beta blockers, compression stockings, and exercises. Avoiding certain things, such as putting your arms above your head, extreme cold or extreme heat. Being immobile can make POTS symptoms worse specially if you have deconditioning POTS. There is hope for getting some quality of life back. This depends on you and keeping up with the things you need to do. Like listening to your doctor, taking your meds and avoiding POTS triggers. Eating smaller meals and having salt with your meals can make a difference in energy. Large meals  makes all the blood in your body go to the digestion of your food and in POTS this can cause black outs, at lease in my experience. I can also black out due to stress, standing to fast, getting up from laying, I have sat up and blacked out before.

I may black out often due to something I can’t control. But I can control how I feel mentally. Never give up hope. There is always hope. If you feel alone and you need someone to talk to reach out. POTS isn’t something you face alone.

Things I have done to help my POTS, going for a walk, drinking a lot of water (I find I feel dehydrated all the time), salt (I make my own salt pills with rock salt and veggie capsules). I used to try electrolyte pills, drink Gatorade, take electrolyte drinks, but due to my mast cell disease I started reacting to them.

Remember things can improve, your mentality is key. Stay on the train of positive thoughts!

Hopeful always.

💗Anna

Ghosted A Poem By Anna Werrun

IMG_4667
I have been ghosted.

You use to message me,
Check up on me,
Wanted to hang out.

Gradually you pulled away,
I see the signs now looking back.
You ghosted me,
You left my life.

The calls, messages and interactions came to a Halt.

Did you die?

No just our friendship died…
But when we were close,
I never thought you of all people would ghost me.

It took me years to figure out the problem wasn’t me.
My illness makes people change.
This is a sad but true fact.

Some people can’t handle the illness,
It reminds them of mortality.
Others don’t want to see us decline,
And some people can not handle it.

It takes time to heal,
To get over the sting of a
Friend, a family member, or a spouse leaving us. Throwing us out like garbage. As though they are saying without words, “you are defective, I have no use for you anymore.”

People leave,
This is a fact.

I am here to tell you,
I will not leave.
I will stay.
I will do my best to be there for you in every way.

A true friend will stick with you through thick and thin. If someone leaves you due to your illness, you are not to blame.

Sickness and illness are not things everyone can cope with.

Ghosting is cruel.

My heart breaks,

Aches,

And shatters from the stories I have heard. And the ghosting I have experienced.

The ghosted are hurt.

To those of you whom have ghosted others, put yourself in the sick persons shoes for a day.

Seriously think, if you were sick would you want those near and dear to you to give up on you and leave you?

Did you think for even a minute about anyone but yourself?

How harsh life can be, when you turn your back on those you love.

The hurt that I feel, I know others feel too…

Find me on twitter @annawerrun on instagram @annaweds and on Facebook https://www.facebook.com/Annawerrun2

You can check out my many awareness videos on YouTube on my channel here https://www.youtube.com/channel/UClKvcNyS5xuAqi97pATIl0A

The Bucket List Project; Haunted Tour Calgary and Banff

IMG_4626

For many years I have wanted to lead my own haunted tour. Due to declining health I have put this on the back burner. I may not be able to go everywhere I have wanted to go, but I was able to get to see some of the haunted places in Alberta. These may only be the tip of the iceberg, but I am proud of myself for being able to accomplish what I did.

While being in Alberta I really wanted to do this but didn’t have to means of transportation. My husband came for a visit and offered to drive us around the city.  Over the course of a few days I was able to get all the photos I could of the outside of haunted attractions.

This was a trying challenge. It is still a project that is in the works. I will do my best to finish this, I know it will take many years of planning and saving my spoons to do so. Energy is something that seems to fade easier and quicker these days. Pain is an unwanted friend, and with me day in and day out. Pain and low energy make life a challenge, I won’t let it stop me from enjoying the simple things in life when I can

I am happy to announce that having some every I able to do a haunted Calgary and a haunted Banff tour. I am forever grateful and appreciative to the people whom helped me to accomplish this huge feat. I am truly blessed with people that understand and are willing to help me. I can cross off my list being a haunted tour guide!

Due to brain fog that is worsening I took photos of my tour to remember my tour. I used a program to create comics for the purpose of a virtual tour. Please bare with my spelling and grammar. Enjoy my little tour through haunted Banff and Calgary. I hope you enjoy my comics! You can also find my YouTube video of these here on my YouTube channel https://www.youtube.com/watch?edit=vd&v=qX6YNQA5pyk

imageimageimageimageimageimageimageimageimageimageimage

Steph May Heads POEM “The Monster In The Mirror”

IMG_4586

THE MONSTER IN THE MIRROR 

By Stephanie May Heads

She won’t shut up
Won’t leave me alone
She won’t stop
Till I’m skin and bone

Just how we wana be
But not rationally
Breaking mirrors is a dream of mine can’t make it reality

Like a constant loop of music
Repeating in my ears
Bullying me, bruising me
For many of my years

Cutting at me, picking at me
Pulling at my hair
Laughing at my make up
U won’t wear it bitch, don’t dare!

Stop eating u don’t deserve it!
Go on, ram it down your throat!
You make vomit, make me sick
Look at you , you’re a joke!

Buy the clothes, don’t buy them
Get a bigger size
Cut things off, bleach them twice
I wana pull out both my eyes.

However much I lose
It won’t ever be enough
The mirror cries at me
And I stand there feeling crushed.

Who is it that is lying?
I can see it all looks vile
Like a candle face, melting,
Dripping down like Dahli’s style.

I hate her, I detest her
Her feelings are the same
All our insecurities
It is us she always blames.

The one thing that I did
That helped me to stay sane
You took it all away from me
And so you won again.

Nothing of me works right
Neither body nor my mind
In a way I can’t believe my eyes
This illness makes me blind.

To me it’s very true
it’s my reality
To me, self loathing and being ashamed
Is my speciality.

I wish I wasn’t like this
Wish I was beautiful
Attractive and confident
It would be wonderful.

Dysmorphia, anxiety,
Depression, BPD.
All these illnesses and sadness
They’re us, they’re you and me.

Check out Steph May Heads other posts here on her page https://annawerrunblog.wordpress.com/steph-may-heads-blog-page/

You Are Sick After All…

IMG_4524When people hear that you’re sick the assumption start flowing in.

“Oh you can do art so that means that you can work.”

“You seemed fine when I see you so you can’t be that sick.”

“You don’t wear your braces out all of the time so your joints aren’t that bad.”

There are countless things that people say to you when you are dealing with chronic illness and they are still healthy. People mean well and are unsure of what to say to someone who is chronically ill.

People form their own opinions. Whether these people are older than us or younger than us or the same ages us. Sometimes ignorance seems to be the only thing that people can relate to. Being ignorant about my illness is not going to help me. It all comes down to your denial about me being sick or you just not believing me.

Recently in a fairly popular tv show there was a scene where two girls did something nice for a young girl with chronic fatigue syndrome. The two girls later saw the girl playing volley ball and confronted her about it. Turned out the girl with chronic fatigue syndrome had a healthy twin. The girls then apologized to the young girl with chronic fatigue syndrome. This did shed a little light on the chronically ill and implied there are no good days only bad days. In my mind it misrepresents chronic illness, because we do have good days they maybe few and far between but they exist. We should never be mocked or condemned for doing something for ourselves on a good day.

It’s extremely frustrating to have to carry around a black folder with me that has countless information in it for other doctor should I end up in the ER and need treatment. I have to carry and take medications on a regular basis.

I feel like I’m a jerk when I tell people not to use scented products around me sometimes they don’t bother me but most of the time they do.

Then I have people commenting on why do I have a tattoo why do I have died hair. I’m sorry what part of my life do you think you have full control over. Am I supposed to put everything aside that I want to be or that I want to experience for example having red hair or something that I’ve always wanted to have I’m not allowed to do that because you think I’m sick. Which I am, yes I am sick. But I’m not gonna live in some sort of self-pity cage and be depressed about everything all of the time because that’s not who I am. I’m going to try my best to do things I want to do and thus the reason I have been working on my bucket list things which I have explained before in other blog post that those things are very simple.

Dying my hair was a huge bucket list thing for me. A friend of mine dyed it for me and I am extremely grateful to her and I love it and it’s something I wanted to do it for me.

I find it ridiculous in my opinion when I am dealing with life-threatening diseases that someone tries to parent me, by discouraging me from living.

I know my disease and what they are doing to me. Stop telling me what to do, because you do not have my diseases, nor are you my parent. You also do not have the education Doctors do.

I am not giving up on myself. What does me not giving up on myself look like? Doing things I love. Trying things I wanted to always try, learning things I was wanted to learn in the time period that I have left. Whatever the amount time that is whether it’s a week or another 10 to 50 years no one knows. Point being I shouldn’t have to explain myself nor should I have to justify anything that I do because it is my life you don’t justify everything that you do.

So get off my back, back up and deal with your own crap and stop trying to parent to me. Stop telling me I’m wrong. Stop telling me I don’t know how to take care of myself.

I’m doing the best I can for myself.

Take care of you fellow rare and chronic illness fighters. Living life when your sick should not be something you have to justify. Be happy while you can, relish in life on your good days. Be a free spirit, be you, you shine brighter when your true to yourself.

Hopeful always.

💗Anna

PS I will leave you with these photos of my Alice In Wonderland Cosplay enjoy.

IMG_4525

IMG_4539