30 Things about me and dysautonomia

October 2nd, 2012 by Carrie, the Just Mildly Medicated gal

Invisible Illness Questionnaire

1.The illness I live with is:
Dysautonomia (dysfunctional autonomic nervous system)  Dysautonomia is different for different people, for me I suffer with Chronic Fatigue, frequent Premature Ventricular Complex, GERD, Long QT syndrome, Inappropriate Sinus Tachycardia and Bradycardia, non-sustained Ventricular Tachycardia and Orthostatic Intolerance. Dysautonomia is considered both a chronic and progressive invisible illness, which means it’s with me for good and can become more impairing. It took a long road to get pointed in the right direction. I owe a lot to The Center for Autonomic Disorders

2. I was diagnosed with it in the year:
2011

3. But I had symptoms since:
2005

4. The biggest adjustment I have had to make is:
I have had times where I’ve been much worse this last year and I have to plan my day down to the details. One of my main conditions is Orthostatic Intolerance, I am basically not that tolerant to being upright so if I overdo things, my heart goes berserk or I have convulsions. I have to rest before and after everything. On a doctor visit day I can’t also go to the grocery store or I will for sure have some type of episode.
Using a cane has also been a huge adjustment; if I have to do something that requires a lot of walking and or standing I am much better off using a cane even though I am not 100% comfortable with it yet.

5. Most people assume:
I would guess that most people know how much I love exercising so they would never think I have a chronic debilitating illness. I am very limited to what I can do, I use a recumbent bike while hooked up to a heart monitor and have started Pilates with an amazing instructor who is also a nurse. I cannot stand up for long without passing out or having severe tachycardia so these are working for me.
In general people assume if you look healthy you are. For people who know I’ve been going through something I would say they assume I have a heart condition when it is actually that my autonomic nervous system is not functioning properly.
Another big assumption is that it must not be too bad because I went to the mall or worked out etc… I have good days, great days even, great weeks at that. Then I am in rough shape for a while. I don’t know ahead of time how it’s going to be or how long it will last but I assure you I do everything I can when I am good.

6. The hardest part about mornings:
The worst is having to start the first wave of medications on an empty stomach (barfaroo) and the kids wanting breakfast right away while I am still light headed and nauseated from meds. It is also very aggravating on Sunday morning when I set up my meds for the week, it takes forever and if I have a convulsions… well it’s a lot like a jigsaw puzzle I didn’t sign up to do.

I took this to show a friend how organized I am

then I did a jigsaw puzzle, or as she called it I had medicinal confetti

7. My favorite medical TV show is:
I used to love House, not a huge medical TV kind of person

8. A gadget I couldn’t live without is:
My IPhone would be my gadget, I am thankful to be chronically ill in a time when I can still have communication and entertainment even when I am stuck at home.
(Yeah Facebook and Words with Friends what would I do without those links to the world??!!)

9. The hardest part about nights:
Waking up with tachycardia or trying to fall asleep with Bradycardia, both are scary feelings.

10. Each day I take:
13 prescription medications (some are the same RX multiple times) and 2 over the counter meds. So that is 105 pills to potentially spill, yes I am still stuck on that. That was a crappy day.

11. Regarding alternative treatments:
I salt load but will need salt tablets soon (barf), I have to try and drink about 80oz of water a day, I have some compression wear for my arms and legs and when other friends with dysautonomia find something that works I give my doc a call. Exercise is so important; I now try to clock some exercise time in even on the bad days.

12. If I had to choose between an invisible illness or visible I would choose:
Invisible, the downfall is definitely harder to diagnose because for a long time doctors thought I was fine because I wasn’t symptomatic at the moment my vitals were taken. As it progressed it became painfully obvious to my doctors. The benefit was I still had time to deal with the diagnosis with my family and decide if and who I wanted to share the information with.

13. Regarding working and career:
I am a stay at home mom and have been since 2003, I volunteer a little less each year and that makes me sad. I loved being in the class room. I always planned on going back to work, I have to say it is harder to imagine what I will do and how I will go about it but I also cannot imagine limiting myself.

14. People would be surprised to know:
One of the big motivators to come all the way out of the ‘invisible closet’ is because I am on the wait list for a cardiac service dog!!!
I think people also would be surprised to know 2 of my 4 kids also have an invisible illness. Oh and my family drove 14 hours for me to go to the Center for Autonomic Disorders… who goes 14 hours to a doctor?

15. The hardest thing to accept about my new reality has been:
I have had a hard time slowing down. My personality and chronic illness don’t go well together. In my head I want to organize, workout hard, volunteer, do projects go to the park and have lunch with friends. Making the choice of what the priority is for that day, and really not even one on some days, can get me down.

16. Something I never thought I could do with my illness that I did was:
I clocked in 116 miles on my recumbent stationary bike for Invisible Illness Week last month!

17. The commercials about my illness:
I have a whole documentary http://youtu.be/8UPMYNkm6Bc  CHANGES: Living with Postural Orthostatic Tachycardia Syndrome. POTS is just one of many was Dysautonomia can surface.

18. Something I really miss doing since I was diagnosed is:
I still miss exercising the way I want to instead of the way my body will tolerate; I miss just walking the dog without wondering if I am risking an episode of non-sustained V Tach. Also going out certain places without fear; like to a concert (which I am planning to do soon) is scary. What if I pass out, what if I have a tachycardia episode it is a lot of worry.

19. It was really hard to have to give up:
Being able to ‘do it all’ in a day. I remember getting the kids ready for school, getting dressed, volunteering, working out, hitting the store making meals and hanging out with friends. It’s a slower pace now and never enough time or energy to do everything I want. I also can’t drive for 6 months after losing consciousness, that’s a LOOOONNNGGG 6 months!

20. A new hobby I have taken up since my diagnosis is:
I wouldn’t say I took them up because of my illness but I try and write as often as I can and I read read read! I love keeping track of my books at Goodreads.com and discussing books with friends.

21. If I could have one day of feeling normal again I would:
Take the little kids to the park and play hard in the morning, have lunch and go shopping with Sierra all afternoon then meet up with my husband and friends for dinner, drinks and dancing!! (I really hope to have a good enough day for all of this soon)

Outside the Doctor’s Office

22. My illness has taught me:
If you feel something is not right with your body and you do not feel you are being heard or given medical information and support that fits how you feel keep looking. Don’t settle. I have also learned no matter how real your illness, no matter how obvious your symptoms someone, and maybe someone you love, will doubt you are really ill.

23. It bothers me when people say:
It bothers me when people ask questions from a place of doubt instead of curiosity.  ‘You can’t be that sick, you exercise so much’ or ‘you were fine last year (last month, last week)’or if I am having a bad day or week saying it’s because ‘You worked out or went shopping etc.. and should have rested when you had a good day.’ For some people I can never win.

24. But I love it when people:
I love it when people ask questions from a place of concern for me or curiosity about Dysautonomia. I also love getting calls, texts and playing Words with Friends, it cheers me up, makes me feel social. (Big props to my WWF peeps) I love a call for coffee or lunch, I love getting out of the house and if I can I will!

25. My favorite motto, scripture, quote that gets me through tough times is:
I did as much research as I could and I took ownership of this illness, because if you don’t take care of your body, where are you going to live?
Karen Duffy

26. When someone is diagnosed I’d like to tell them:
You will find a new normal

27. Something that has surprised me about living with an illness is:
That I am beginning to find a new normal.

28. The nicest thing someone did for me when I wasn’t feeling well was:
I am blessed to have a few.

My best friend having a natural balance to not treat me any differently but cut me some slack.

An old friend taking some time to catch up and be able to be concerned but still make a joke or two that lightened the weight of it all a little.

My husband explaining to me what Dr. Thompson told us; that my fatigue is not the same as when a healthy person is tired and that my body has a need to rest. Then he did the dishes…again

29. I’m involved with Invisible Illness Week because:
Dealing with this alone, for me, is not the option I thought it might have been in the beginning. I want people to know what is happening to me, why I might have to cancel plans and why I have so many limitations. I also want to let people know that Dysautonomia is very real and not many doctors are aware of what it is, or how to treat it. Awareness is crucial.

30. The fact that you are reading this list makes me feel
Validated and supported, really I couldn’t ask for more.

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11 Responses

  1. Incredible explanation of your illness. You really spelled it out in “human” terms, which I, for one, can appreciate. I’ve got bipolar disorder and depression and definitely agree with you that people say stupid things; can’t tell you how many times I’ve heard, “Oh, I’m depressed too! See, I broke a fingernail!” as if there’s a comparison between my depression and their broken fingernail. Keep rocking on, one day at a time!!

  2. Hey Carrie, Love your blog. I am reading Unlimited Power by Tony Robbins and I was inspired to search Chronically Awesome rather than Spoonie today because I am trying to change my mind set and connect with Spoonies who have figured out a way to overcome. Thanks for inspiring me!

  3. Anonymous says:

    excellent

  4. Angela Capel says:

    I feel your pain. I was diagnosed with Autonomic Dysfunction in the 90’s. Its almost impossible to find a physician that even knows what it is. I have good days, some even great but then I have really bad days. There are things going on with my body now that scare me to death. Its not so invisible now. I had myoclonic jerks on the left side for almost 3 months then they went away as fast as they came. Of course there was no medical explanation had to be all in my head. They even sent me to a hypnotist. He tried but only made it worse. He said it was not subconscious or “in my head”. My friends and my kids now think I’m crazy. But my husband is amazing and very supportive. I know have difficulty laying down at night because I do a really strange rhythm. No idea what it is but it takes my breath away. Now I have insomnia because I’m scared to lay down at night. I haven’t explained this to my husband because he gets very worried. So I just wait till I’m about to pass out to go to sleep. Which as you know makes the fatigue a lot worse during the day. I always explain it “it’s like someone put an IV in and drained all my energy” I always get strange looks with that comment. But that’s what it feels like. I’m not on any meds right now. I used to take Toprol 12.5mg. Might be time to get back on it. I hate the tachycardia!!!! I don’t pass out anymore. Or I Haven’t in years. I’ve learned to do things different. you have to. And I know what you mean by the new normal. My daughter also has it. I was working full time but now I stay home and take care of my husband. He’s great and so supportive. I couldn’t live without his support!!!

  5. Melissa says:

    Amazing explaination from an amazing woman!

  6. Anastasia says:

    Oh but you forgot my favorite. “You’re not really sick at all and that you only “wished” you had ______ so you don’t have to do or to get out of doing” People said that for 12 years to me and it ended in emergency surgery. Now I have MORE things to deal with. Side effects from the surgery that the majority of folks don’t get and it starts again. (sound familiar to anyone?) And then there are the days I DO get to get out and do something. “You’re Superwoman”, well if I am then I spend most of my days chillin’ in my lair praying I don’t have to go out and save anyone today because it’s hard work! I’ve been juggling my spoons for a long time now, I just didn’t have a concept to put with the reality. Now I not only have that but other that actually understand and are able to help me adjust the learning curve significantly. ty

  7. Nora M says:

    Great post. I also live with an invisible illness, so it is great for me to see the thoughts and feelings of others living in a similar state. I agree– I wish that I could do it all too! I want to be able to run hard, play hard, exercise hard. Its frustrating to have things you want to do but be unable to right now. I definitely subscribe to the idea of finding the new normal. Thanks for your blog and the inspiration.

  8. […] 30 things about my life with dysautonomia, geesh catch up would ya?! […]

  9. So clear and precise and easily relatable!

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