Understanding can be a concept that poses great difficulty for many different reasons.
For me, it's health
One of the hardest things is the "how"
How can I explain my health to others, so they can fully understand what I go through on a day-to-day basis.
This can be relatively difficult when things like definitions just provide them with medical words that are hard to understand and do not always portray an accurate picture.
One of the hardest things is explaining "why"...
WHY
:x: I frequently have to cancel my plans
:x: I can't be out in the heat for very long
:x: I can't stand without getting sick
:x: You frequently have to come to my place, instead of me going to yours
:x: I can have a fairly good day yet completely exhausted the next
:x: I LOOK healthy on the outside, but am really suffering on the inside
:x: I am the way I am
---------------------------------------------
If you have been a follower for a little while, you know that I struggle with a condition known as POTS or postural orthostatic tachycardia syndrome. This past Friday, I had my long awaited appointment with a geneticist to get "officially" diagnosed with another condition : /
I finally have a reason for my POTS.
This "reason" is called Ehlers-Danlos Syndrome
...or EDS for short (yes, another acronym!)
**I will explain in a later post how these two are related**
**Click Pictures to Enlarge**
- These are just a couple things I can do -
This is not the Beighton Scale
I scored a 9 out of 9 on the Beighton Scale
*used to help diagnose EDS*
I have always been extremely flexible, but never though much of it when I was younger
I was the kid who had the really long arms, that could bend/contort themselves in odd positions that others just thought was fascinating. Little did I know, it wasn't a good thing. For me, this was normal. My mom possessed the same traits (while not as extreme as mine) but still in itself, I thought it was abnormal if you couldn't do what I could.
****************
.Anyways.
Back to my hardest things...explaining the "hows" and "whys"
If you would like to share "The Spoon Theory" with your friends, family, or anyone you know, click here to download it via text/pdf
I finally have a reason for my POTS.
This "reason" is called Ehlers-Danlos Syndrome
...or EDS for short (yes, another acronym!)
**I will explain in a later post how these two are related**
**Click Pictures to Enlarge**
- These are just a couple things I can do -
This is not the Beighton Scale
I scored a 9 out of 9 on the Beighton Scale
*used to help diagnose EDS*
I have always been extremely flexible, but never though much of it when I was younger
I was the kid who had the really long arms, that could bend/contort themselves in odd positions that others just thought was fascinating. Little did I know, it wasn't a good thing. For me, this was normal. My mom possessed the same traits (while not as extreme as mine) but still in itself, I thought it was abnormal if you couldn't do what I could.
****************
.Anyways.
Back to my hardest things...explaining the "hows" and "whys"
The following video is known as "The Spoon Theory" written by Christine Miserandino
Christine has Lupus, but this explanation is a wonderful portrayal for any illness/disease,
and in my case - EDS and POTS.
If you know anyone struggling with a chronic illness, I really encourage you to walk this short clip. You will gain a deeper understanding of what they may go through...
If you would like to share "The Spoon Theory" with your friends, family, or anyone you know, click here to download it via text/pdf
I hope everyone is well
♥ erinj0



6 comments:
wow all your joint bending is amazing...i can't do that!
This post was deep girl! The spoon theory is amazing! I am so sorry about your new diagnosis... Its like one thing piling on another, I know. BUT, This has a rhyme and a reason in your life... You are such a kind person and an encourager! Hang in there and don't lose hope! <3
I am very sorry to hear about this latest diagnosis. On one hand, I'm sure you're relieved to know the cause of your other illness, but it must be so frustrating having to deal with ALL of this!
Because you're right, it is difficult to swallow that you are sick when you look SO HEALTHY on the outside. And not just healthy, but you are so pretty and happy and optimistic! It's almost unfathomable that you are in such pain!
Thank you for this informative post. I know it helped me understand things a little better.
Sorry to hear about the diagnosis :(
On the bright side you are doing a fantastic job by spreading the word about your illness which hopefully will help other people understand <3
xxx
@Hannah - love you girl, thanks!! YOU are such an inspiration as well and love your upbeat attitude!
@JenFab - thanks for reading this. I do love to spread awareness for anyone who is interested. It's hard when not a lot of people understand. Thanks for being an awesome blogging friend :) your comments always make me smile!
@Georgina - thanks girl! <3
hi girl! :]
i can't reply to your emails thru gmail --boo! but i usually listen to erin mccarley radio station & ellie goulding & christina perri!
what do you listen too?
ashlyn.myunrehearsedlife@gmail.com
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