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

Riding the Roller Coaster

Written by Katie. Posted in Challenges

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Let me just say that I am realizing that Ehlers Danlos and POTS are such weird disorders.  There is so much inconsistency with how they affect me day to day.  Last week was such a better week for me.  I didn’t need my cervical collar as much, it felt like my meds were really doing a good job controlling the POTS, and I was able to rehab with much more stamina. Then Sunday and Monday came and POTS and EDS decided to hit me like a ton of bricks.  My joints felt so loose and I had to use my wheelchair again.  Sigh.

I keep saying I just don’t understand these disorders.  I have kept journal after journal trying to pinpoint patterns so I can try and predict good days and not so good days.  So far these are a few of the patterns I have been able to find…

Period week is the worst for POTS and EDS
When I have GI problems my POTS is worst 
When I have bad neck instability my POTS is worst
When I am in motion, I can often make my EDS pain feel better

As I move forward, I am gathering, that it is the therapy that will bring me more consistency with controlling EDS as I train and condition my body more and more on stabilizing and protecting my joints…and it is the trial and error with meds, along with a good salt/liquid intake that will hopefully bring me more consistency with POTS. 

When I saw Dr. Lavallee, he told me that if he does not go to the gym for three days he starts having more pain because he feels his joints getting more lax.  Dr. Lavallee has had to accept strengthening and therapy as one of his basic needs like eating and sleeping in order to keep from becoming disabled.  I have now realized that therapy and maintaining good muscle tone, is not a luxury for me, but also a need, and a way of life in order to keep my body intact.

I have to remember to keep the big picture in mind (something easier said than done).  If I think back to where I was this summer to where I am now, I AM having better days.  I have walked up for communion two weeks in a row.  I was able to do a small amount of mall walking with my Dad last week.  I am able to do more standing up exercises at therapy without getting sick. 

So I guess what I do “get” about EDS and POTS is it is something I need to constantly keep at…progress is just slow. slow, slow, but slow progress is definitely better than no progress.  I remember Dr. Lavallee saying it could take six months to a year of therapy and general conditioning before I start seeing major improvements.   

When I got to therapy yesterday, I was feeling discouraged with the inconsistency of it all…Then I started my exercises and as I worked out in the gym, I thought about how I really have come a long way since the summer; especially as I was able to stand up and do arms on the recumbent bike.

Dr. Lavallee is someone I now think of when I start to get discouraged.  As I did my exercises, I thought about how he was in a wheelchair throughout his childhood, and he has run marathons and climbed mountains as an adult.  I thought about how his picture is on the wall at his office for swimming 300 miles. 

So something else I “get” about EDS and POTS is it’s all about regaining perspective and digging deep to constantly renew my patience, persistence, and determination.  I keep telling myself, if Dr. Lavallee can do it, so can I.  Maybe I should get W.W.D.L.D. (What would Dr. Lavallee do?) tattooed somewhere 😉  

Remember the student at therapy that made my day a few weeks ago?  She informed me at therapy yesterday that she has to present to all of the therapists at the end of her internship on a topic of her choice.  She said I inspired her to choose EDS, and she invited me to the presentation on February 22nd.  I got sooo excited and started rattling off things for her to consider including in her presentation.  Like…POTS as a result of EDS, the inconsistency of the pain, how the pain travels, the invisible illness aspect, why us EDS’rs look like we have ADD all the time since we can’t sit still because we are constantly trying to find positions that make our joints feel stable….What makes me the most excited that she will be presenting on EDS is that it is often such an overlooked and misunderstood disorder.  I get super happy when I hear about people educating other health care professionals on EDS, since that means more of an awareness which can result in more progress and research.

I will definitely be at her presentation.  I am excited to learn more about her findings, insights, and management suggestions as I continue to try and understand this strange, strange disorder.   

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