Accepting Help

One thing that I have always struggled with for as long as I can remember. I am a stubborn person that wants to do everything myself and don't like people telling me I can't do it (which can be a weakness and a strength). I don't like letting my EDS get in the way of things.  But there comes a point where you have to accept help and you have to admit that you can't do everything.

I hate feeling like a burden, most people don't make you feel like one but there are people that act like putting a piece of rubbish in the bin for you is a huge deal. But you didn't ask to be sick, you aren't lazy there are just some things that you can't do. Some times leaning down to get that thing you dropped will leave you in pain or carrying in the shopping bags will leave you in a sling.

Here is a shocking statistic about how many people with a chronic illness feel like a burden:

So if your chronically ill, remember your not a burden you just need help to get some things done.



Thank you so much for reading! I know this isn't my most eloquent writing but I wanted to touch on this subject

Favourite Quotes

I, as a writer absolutely love quotes so I thought it would be fun to share some of my favourite quotes with you. I also have a pinterest board with them on. If you would like to see more here is my pinterest: https://www.pinterest.com/rachaelthezebra/pins/

I hope that these quotes have inspired you. I was wondering would you like to see my favourite bible verses and quotes? If I have enough interest in that I will do that. Thanks so much for reading. Which quote is your favourite

****ALL RIGHTS GO TO THE ORIGINAL CREATOR- LINKS TO ALL ON MY PINTEREST****

Dysautonomia/POTS Awareness Month: What is Dysautonomia/POTS?

This month is Dysautonomia/POTS Awareness Month and I wanted to do a post on what Dysautonomia is and try to explain it.

What is it?

Here is a description I got off of the internet:

Dysautonomia is a medical term utilized for a group of complex conditions that are caused by a malfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body, including the cardiovascular system, gastrointestinal system, metabolic system, and endocrine system.

Thats pretty much a fancy way of saying that the things that your body is meant to do without you thinking about mine has forgotten how to do it.

A graphic that explains it well: If you can't read it here is the link: https://www.pinterest.com/pin/304978205995069083/

So... What are the symptoms?

Symptoms of dysautonomia may include:

Orthostatic Intolerance (inability to remain upright) Dizziness Syncope (fainting/near fainting) Tachycardia (fast heart rate) Bradycardia (slow heart rate) Palpitations Chest Discomfort Low Blood Pressure Lightheadedness Gastrointestinal Problems Excessive Fatigue Exercise Intolerance Nausea Visual Disturbances Weakness

Shortness of Breath Mood Swings Anxiety Vertigo Migraines Tremulousness Noise/light sensitivity Insomnia Frequent Urination Temperature Regulation Problems Brain fog/forgetfulness Inability to concentrate Difficulty with recall Appetite Disturbance Hypersensitivity to sensory stimulation Fatigue

So which ones affect me?

• Orthostatic Intolerance
• Dizzinenss
• Fatigue
• Syncope
• Inability to concentrate
• Difficulty with recall (which is SO fun for exams)
• Appetite Disturbance
• Hypersensitivity to sensory stimulation
• Shortness of Breath
• Vertigo
• Migranes
• Noise/Light Sensitivity
• Insomnia
• Temperature Regulation Problems
• Brain fog/forgetfulness
• Tachycardia
• Bradycardia
• Palpitations
• Chest Discomfort
• Low Blood Pressure
• Lightheadedness
• Gastrointestinal Problems
• Nausea
• Visual Disturbances
• Weakness

So what is the treatment?

There is no treatment that works for everyone, there is no cure and management is a tricky thing to get right. Some people are very mildly affected and others are bed bound. There are some medications that can help, I take Florinef to help with my POTS- it helps a bit but also has some nasty side effects.  People with POTS need to drink a lot of water and electrolyte drinks as well as eat a lot of salt. These too things help to increase the fluid volume which helps to improve blood flow. 

There are also several things that can make POTS worse here is what happens to a Dyautonomia patient has a shower:

As you can see Dysautonomia affects me on a daily basis. There is no real treatment or awareness and this can strike at anytime in your life. Sometimes other conditions such as Ehlers Danlos Syndrome can cause it but a perfectly healthy person can get it too. Most of the time teens will get POTS but there is no real research into why it hits teens.

Thank you so much for reading please help to raise awareness by sharing this post.

"But you don't look sick"- Comments I get as a person with a invisible illness/disability

This week is invisible illness awareness week

As most of you know I have an invisible illness called Ehlers Danlos Syndrome. I use a wheelchair but only part time. Some days I use crutches or a cane and some days I can walk a little bit normally. On those days there is nothing to indicate that I am sick. My favourite hobby is makeup so most days when I go out I have my makeup done. By looking at me I look like a normal 18 year old- but my insides tell another story, the ligaments and tendons around my joints are literally falling apButart, my stomach is paralysed as is my bowel, I have an ACE to manually empty my bowel, my bladder has failed so I self catheter, my heart is damaged and that is just touching the surface of my health problems. I am not telling you this for you to feel sorry for me but so you know that just because you can't see my health problems doesn't mean they aren't there. You can't make all this up! The tests don't lie.

I get so many comments about my looks and my health. I know people don't mean to upset me but comments such as "You don't look sick" just invalidate my issues.

Please remember that just because you can't see something doesn't mean it isn't there. And be there for your friend and remember to just say "You look great today but I know you probably aren't feeling as good as you look" or something along those lines not "You don't look sick" or anything to that effect

Why I use a wheelchair when I can walk.

A question I get a lot is why I use a wheelchair if I am able to work. If you haven't had much contact with wheelchairs when you see someone in a wheelchair you think that if someone is in a wheelchair they MUST be paralysed- WRONG.

That mindset is how this meme started getting circulated:

The person in this meme could have very easily been mine. It isn't rare that I will stand up if I can't reach something on a high shelf.

The reasons I use a wheelchair are:

1. Dislocations:

Because of the EDS my joints dislocate constantly and I am unable to walk long distances without dislocating my hips. There are times where I can walk short distances and there are times I can't even walk to the bathroom. Every day is different which means the amount of time I use my chair is different.

2. Seizures:

I have recently started to have seizures so for my own safety when I am out I use the wheelchair as dislocating joints and hitting the floor doesn't help.

3. Drop Attacks:

I have drop attacks so for the same reason as the seizures I use a wheelchair when I am out.

4. Fatigue:

I have really bad fatigue caused by EDS and chronic fatigue and most days walking takes more spoons than I have so I use the chair to help preserve my energy.

5. Muscle Weakness

I have muscle weakness and the more I walk the worst the muscle weakness gets and the more likely I am to fall. So it is again a safety issue.

6. Chronic Pain

I am in constant pain and walking takes that pain from a 4 until a 9 so that I am not crying by the end of my outing I use the chair.

As you can see there are many more reasons to use wheelchairs than just paralysis. I have come to the conclusion that so I can enjoy myself sometimes I use the wheelchair. It was a hard thing to accept but since I have I have been able to get out more.


Eventually I will be in a wheelchair full time and I want to enjoy the fact that I am not glued to my seat and stand up if I want to reach someone. You can't tell if someone is paralysed just from looking at them. Don't judge a book by its cover

Uplifting Music: Fight Song Playlist

I find that when I am really struggling music can help uplift me. I have some favourite christian songs too but I respect that not everyone is christian so you can skip that bit if you don't want to but I still highly suggest you listen to them :)

Colbie Caillat- Try

Favourite Lyrics: 

Wait a second 

Why should you care what they think of you

When you’re all alone
By yourself, do you like you
Do you like you

Rachael Platten Fight Song:

Favourite Lyrics:

This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me

Losing friends and I'm chasing sleep
Everybody's worried about me
In too deep
Say I'm in too deep (in too deep)

Katy Perry- Roar

Favourite Lyrics:

I got the eye of the tiger, a fighter

Dancing through the fire
'Cause I am the champion, and you're gonna hear me roar
Louder, louder than a lion
'Cause I am a champion, and you're gonna hear me roar!

Katy Perry- Firework

Favourite Lyrics:

You don't have to feel
Like a waste of space
You're original
Cannot be replaced

If you only knew
What the future holds
After a hurricane
Comes a rainbow

Maybe the reason why
All the doors are closed
So you could open one
That leads you to the perfect road

Sara Bareilles- Brave

Favourite Lyrics:

Maybe there's a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is

Hunter Hayes- Invisible

Favourite Lyrics:

Trust the one

Who's been where you are wishing all it was
Was sticks and stones
Those words cut deep but they don't mean you're all alone
And you're not invisible
Hear me out,
There's so much more to life than what you're feeling now
Someday you'll look back on all these days
And all this pain is gonna be invisible
Oh, invisible

So now for the christian songs that I love

Britt Nicole- Have Your Way

Favourite Lyrics

So I'll stop searching for the answers
I'll stop praying for an escape
And I'll trust You God with where I am
And believe that You will have Your way
Just have Your way, just have Your way

Even if my dreams have died
And even if I don't survive
I'll still worship You with all my life
My life, yeah

Britt Nicole- When She Cries

Favourite Lyrics:

This is the dark before the dawn
The storm before the peace
Don't be afraid 'cause seasons change and
God is watching over you
He hears you

Mandisa- He is With You

Favourite Lyrics:

He is with you in the ICU
When the doctors don't know what to do
And it scares you to the core
He is with you

We may weep for a time
But joy will come in the morning

Mandisa- Stronger

Favourite Lyrics:

When the waves are taking you under
Hold on just a little bit longer
He knows that this is gonna make you stronger, stronger
The pain ain't gonna last forever
And things can only get better
Believe me
This is gonna make you stronger

Jamie Grace- Fighter

Favourite Lyrics:

But she knows the name of every nurse she sees

She's a fighter, got that fire
When they thought she'd fade away
Throws a fist up, keeps her head up
Feelin' stronger everyday
When she gets down on her knees,
She finds the courage to believe
She's a fighter, she's a figher
Who inspires, yeah

Thank you for reading I hope that this helped you and you were able to add some new music to your playlist!

****All rights go to the singer and record company****

Hope Toys

A few weeks ago I was trying to find a very special gift for a very special girls 6th birthday. Zoe has EDS like I do and me and her mum have become very close. We visit them when we can as we live in the same state. I was looking online and found Hope Toys I really loved all the photos on her page so I emailed her. The prices are very reasonable and she worked with me to create something that was very similar to Zoe. She had never made the braces that Zoe and I wear but she worked very hard to make it as realistic as possible and did a fantastic job.

Here is Zoe's doll:

Zoe's Doll for Zoe's privacy I have not added a photo of Zoe but it does look like her. I also have not undone the box because Zoe hasn't received it yet.

She then kindly offered to make me one- which was so sweet of her. She also is going to help us to raise EDS awareness. This business is amazing. She has not asked me to make this blog post but I want to get her some more business so if you, your child or someone you know has a disability I highly recommend you looking into Hope Toys.

Here is my doll and wheelchair:

I absolutely love this blanket. The top says "Rachael's Journey" and the bottom says EDS

The hoodie says the same as the blanket. I think that the doll looks like me  

The wheelchair

The back of the wheelchair says Rachael's Journey and EDS

Everything is so well made and she is very responsive to messages. Please go and check her out and if you have any questions please email her.  She is doing an amazing job at raising awareness of disabilities and helping children (and adults ;) ) feel more 'normal' whatever that word means!

Sorry I haven't been around I am having a lot of medical issues but I plan to blog more soon