Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

A Different but Similar Perspective

Written by Katie. Posted in Editorials, Favorites

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My friend Ila, who also has EDS and Dysautonomia recently sent me this blog post she came across to read (If the rest of this post is going to make sense, then you should read the post from the link above first).  I read it a few times, and have thought long and hard about this person’s perspective.  I totally respect what this person has to say and her experiences with both Dysautonomia and EDS.  There are so many things she says that I found myself nodding my head in agreement to.  However, there are a few things from this post, that I would like to just bring a different perspective to.  I feel that we must keep in mind that when someone blogs, it is one person’s perspective, based on their personal and individual experiences.   

I, myself, have to realize that when I post about EDS and POTS, it is from my experiences, and my experiences only; MY symptoms, My struggles, My triumphs, and where I am on the very wide spectrum of both disorders.  I know there are going to be things I say along the way that people disagree with, but when I started this whole blogging thing, I knew that was all part of the “game.”  

Since reading the above post, I have felt compelled to respond. My following response is by no means an attempt to attack, or put this blogger on the defensive.  It is to merely express my differing perspective about a few things that were mentioned, based on my personal experiences living with EDS and POTS. 

This, my friends, is what I believe to be the beauty of putting thoughts out there.  It gets people talking.  It gets people thinking.  It might just cause one of those rare “aha” moments in life.  And the hope is that the talking and discussing that results can be conducted in a supportive, productive, and respectful manner. 

Thank you Ila for sharing this with me, and thank you to the blogger who helped me see things from a different point of view.

My Response…

I have wrestled with that question, “Do I think I am sick?” for a while now.  Reading this post was actually very timely for me in processing this question.  Hopefully I will not confuse you with my perspective about this topic, which can, at times, still become confusing for me…

Dr. Lavallee is my EDS doctor too.  I have also adopted his core belief and philosophy that strengthening the muscles MUST be more than a hobby for us EDS’rs.  Physical therapy, prolotherapy, and overall strengthening work have become my way of life; non-negotiable, necessary, a means to hold my body together.  I agree wholeheartedly with all of the points in the post that staying active is imperative to maintaining a quality of life. For example, I will now not allow myself to go to a movie or an outing, if my therapy is not done first.  Dr. Lavallee is right.  It has to be a part of my daily routine like eating, drinking, and going to the bathroom.  Since my diagnosis, I have learned that it is crucial to my survival, well-being, and functioning.   

I also agree that inactivity is my enemy.  That is how I became sick, yes sick, in the first place.  I was having many strange symptoms and pain with running so I stopped.  I thought stopping running would allow my body to heal, but this backfired big time.  My health declined rapidly; which sent me on the diagnosis goose-chase.  Little did I know that allowing my muscles to lose their tone, would make my body crash to a point where I could not eat, where I had to crawl from room to room because if I walked I knew I would pass out, where I cried each day thinking I was going to die before anyone ever figured out what was wrong with me.  Sounds extreme, but that is the God’s honest truth.  

In addition, I feel there is also a fine line in thinking that rest is my nemesis.  My PT has gone over with me time and time again that if I just push through the sickness I experience, 9 times out of 10, I will just become sicker and need more rest and recovery time.  I have learned this the hard way after she has had to kick me out of the therapy gym a few times.  Therefore, I do not think it is as simple as pushing against the limits.  I am finding that a key for ME is yes, consistent activity, but it is also knowing my limits and remaining within them.  I have hugged the toilet bowl too many times to know that I can’t ignore my body’s signals that it has had enough.   

So, do I think I am sick?

I do not think EDS itself makes me sick.  I like the term the blogger uses for EDS:  “broken.”  I find that to be an appropriate term since there are many days my ribs or my shoulders or my back feel broken…But for me, it can be more than that.  I definitely can become sick from the manifestations of EDS that I experience.

As I read her post for a second time, I found that our opinions probably differ the most about Dysautonomia.  I always try and explain to people that EDS causes me pain and fatigue, but POTS causes me the sickness part.  I would not have had to take a year off of teaching if it was only because of pain.  I have a high pain tolerance and can push through a lot.  It was the sickness from the Dysautonomia (tachycardia, body heaviness, losing a lot of weight in a short amount of time, dizziness, brain fog, slurring speech, flu like fatigue, migraines, nausea, vomiting, cramping…) that kept me from working this year. 

As I read her post for a third time, I still questioned myself as to if I think I really am sick.  I got out the dictionary and looked up the term, “sick,” wondering if our viewpoints were just a matter of semantics.  According to Webster’s Dictionary, The definition of sick is, “suffering from disease; ill,” and the definition of ill is, “not well; sick.”  If I go by these definitions alone, then yes, I do believe that the manifestations that I experience from EDS can make me sick. 

A perfectly healthy person does not throw up and become dizzy from standing up for more than a few minutes.  A perfectly healthy person does not experience migraines and extreme nausea with too much activity.  A perfectly healthy person does not feel like they are can’t form a sentence because they are not getting enough blood to their brain, and in turn slurs their words and feels like they weigh a thousand pounds.  A perfectly healthy person does not experience flu-like fatigue from going to Walgreen’s. 

Maybe it is all a matter of semantics, but I felt that it was important for me to get my perspective out there too, for my peace of mind. 

With that being said, there are days I do not feel as sick, or as broken.  These are my good days.  The days that I usually push myself to do more and more.  Sometimes I pay and then get sick (usually vomiting) from not listening to my body, and pushing too hard, but there are other good days where I find that I can handle pushing myself further.  

Basically, as I thought more about it, I don’t think “sick” is as black and white as it is being made out to be.  To be honest, I have struggled with this for the past year….Not feeling weak, or guilty, or ashamed to admit that I have been sick.  But I also like to believe that I have a never say die attitude, and I will fight until becoming sick because of these invisible illnesses, becomes less frequent, and more of just the “background noise” in my life. 

I don’t usually like to focus on how the illness aspect of it all affects me.  But I also believe in being real.  I respect what this blogger has to say, and to be honest, I am happy for them but also a tad bit envious that they feel like they are not sick.  I think one must think hard though, when telling a whole population of people with EDS and Dysautonomia that they are all not sick.  I do not think that can be determined until they live a day in each person’s body, and experience where they are on the very, very broad spectrum of both EDS and Dysautonomia.  

I am going to leave it at that.  Hopefully I am not out of line, and I apologize in advance if you think I am.  Again, I realize this is someone else’s perspective and I thank them and respect them for sharing. 

Now that I feel like I have said what I needed to say, I will go back to focusing my energy on being strong, determined, tough, and a fighter.  It is crucial for me to return to focusing on building a life of fulfillment and happiness; a life where EDS and POTS do not define who I am.   

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