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
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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**
This is not 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
