this Dysautonomia gal is a Work in Progress

April 24th, 2015 by Carrie, the Just Mildly Medicated gal

A work in progress, this Dysautonomia gal is working hard towards the progress.

We’ll call this work in progress Eat, Exercise, Love…

Unfortunately eating mostly whole foods, exercising, and loving the heck out of me as well as everyone around me is not going to cure any of my medical issues. I’d be wary of people who claim any differently, and they’re out there. My own cardiologist is convinced cardiac rehab is just going to zap my autonomic system back online. The truth is I am just trying to work WITH my body, and it’s issues, instead of fighting my body or hating it.

After being diagnosed with Dysautonomia (dysfunction of the autonomic nervous system) which impacted pretty much my entire body I started seeing my body as separate from ME, after all it was the uncooperative enemy that began holding me back from doing what I wanted. How are you supposed to embrace the thing weighing you down? How can you treat your body well when you’re mad at it? I don’t really know how yet as we are just starting to get on a good foot in this relationship but I am hoping for positive things.

So the goals:

behappy

EAT

Eat mostly whole foods and avoid processed foods with too many chemicals to name, chill on the snacking, and keep track of what is going in my body. I have been surprised and how much and how quickly my diet changed when I was holding myself accountable for what I was eating. Working within restrictions of a Gastroparesis friendly diet and coming a bit closer to hitting those nutritional needs and losing the empty high calorie junk has eased some nausea, helped with a few pounds, and I will admit to having a bit more energy.

(Gastroparesis is a partial paralysis of the stomach which causes poor digestion, malnutrition, nausea, and vomiting. I’ll also add that I am NOT in a “flare” meaning I am not at a point where those symptoms are acute. When they are acute it will greatly impact what I am able to eat and how much.)

EXERCISE

If you’ve been around you’ll know I am in cardiac rehab, and I love it. Yes, I am there because a cardiologist thinks with some conditioning my autonomic nervous system will just decide to function normally. I do believe you can do many things to strengthen your body to help alleviate symptoms but unless you have dysautonomia truly due to deconditiong this theory makes little sense.  Luckily I have other doctors who understand the condition better but I also decided when else could I work out in a controlled environment with nursing staff right there to monitor me… my insurance covers it so I see it as amazing personal trainer time.

As I am exercising more and gaining strength and confidence in my body I am willing to try more. I am doing things like walking on completely flat surfaces for about 10 minutes at a time, that was something that 2 months ago I didn’t trust my body to do. I had passed out too many times from my autonomic system causing my heart rate to sky-rocket and my blood pressure to plummet to trust my body at all. Those abnormal responses are still happening I am just doing better at listening to my body and either going slower, waiting it out, or giving my body the break it needs… but then I am trying again.

I even did a yoga session today! Something I have said for years that I can’t do because of the postural changes. As I am getting stronger I am finding I can do it, it’s just at my pace and not someone else’s. My pace is slow, much slower than I would like, but it is time to accept I am not racing anyone, this is about me.

LOVE

As my body responds to my new ever challenging demands I am finding a better relationship. I can’t say I see my body and ME as a united front yet. We are learning to trust each other, a little dance of give and take. When I ask something new of my body, like yoga today, and it tries I am proud. When my body starts to get dizzy and over worked, like yoga today, I am trying to give it respect instead of frustration and anger. Total work in progress. 

As these changes are happening in me I am also thinking about the love outside of me. I have such an amazing supportive partner who has been a patient caregiver even when at times I know it had to be scary and frustrating. My kids more often than not chose encouragement over frustration at my limitations. For all of my crazy doctor patient dysfunction I do have a team of doctors who understand my condition and are willing to really take the time to be sure I am at the best I can be. My nurses, oh how I love the nurses involved in my care. My friends, both from way back to new ones, I am amazed at the understanding and compassion that comes from them. I am not usually an overly mushy person but I need to be sure these people really know what that means to me.

everyday

 

Are you a work in progress? What are you working on?

Did you miss about my starting Cardiac Rehab? <~ click it

 

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4 Responses

  1. Marie Boone says:

    Great report. Great writing. You continue to be in our thoughts and prayers. Much love to you all. ♡ Aunt Marie and Uncle Bill

  2. Jenny says:

    I can so relate to this. I know it’s a long, windy road, but you have come so far! Congrats on all the progress you have made!

  3. Sandy says:

    Amazing work! I’m excited to see the progress you are making. I try to practice yoga 30 minutes, 5x a week. I’ve had to alter nearly every pose to keep from feeling faint. Nothing I do is upright. My Dr. said the best thing I can do for extreme exhaustion is light exercise. So when I feel my worst I try to get up and do something small. It does make me feel better but it is not easy. The biggest challenge I’m working on right now is practicing meditation. It’s so difficult to do when your heart rate won’t cooperate. You have inspired me to make love and appreciation goals. I am far too self obsessed. I am hopeful that I am a work in progess.

  4. Amy says:

    All great tips. My brother actually told me a similar quote last week about making small steps everyday. Exercise has been the biggest impact on my life. I now love my yoga classes and feel so great afterwards but I am also a work in progress.

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