Amy's Journey with...

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I ~ Migraines ~ Obsessive Compulsive Disorder ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Friday, September 13, 2013

30 Things About My Invisible Illness You May Not Know: Dysautonomia (POTS)



1. The illness I live with is: Many, but this blog entry will be about Dysautonomia (POTS).

2. I was diagnosed with it in the year: 2011 or 2012

3. But I had symptoms since: I'm not sure, but they only became really bad in the last two or three years.

4. The biggest adjustment I’ve had to make is: I can't shower by myself anymore.

5. Most people assume: That "POTS" has something to do with flower pots, pots & pans, or drugs.  This annoys me to no end!

6. The hardest part about mornings are: the dizziness, weakness, and shakiness.

7. My favorite medical TV show is: Scrubs.

8. A gadget I couldn’t live without is: Powerade Zero!  Is that a gadget?  I seriously couldn't live without it, though.

9. The hardest part about nights are: The dizziness, weakness, shakiness, and pain from the falls I had that day.

10. Each day I take 47 pills & vitamins. (No comments, please) 

11. Regarding alternative treatments I: drink lots of water, and drink Powerade Zero.  I also take Magnesium.

12. If I had to choose between an invisible illness or visible I would choose: Invisible.

13. Regarding working and career: I can't work, but someday I want to write The Great American Novel.

14. People would be surprised to know: I am not under a doctor's care for my POTS, because my doctor, at a medical school, and her supervisor doctor, don't know what to do for POTS, so they told me not to come back.

15. The hardest thing to accept about my new reality has been: How scary it feels when I'm in tachycardia and how exhausting it is to simply stand up.



16. Something I never thought I could do with my illness that I did was: Pass out face first on the sidewalk outside the hospital where I was getting physical therapy for my EDS (Ehlers-Danlos Syndrome).

17. The commercials about my illness: I haven't seen any.

18. Something I really miss doing since I was diagnosed is: Having more energy.

19. It was really hard to have to give up: showering without help.

20. A new hobby I have taken up since my diagnosis is: crochet.  It's not a new hobby, but I've taken it up again, and I'm much better at it than I used to be.

21. If I could have one day of feeling normal again I would: stay awake all day, shower by myself, and not have so many falls.

22. My illness has taught me: to not take standing up for granted.

23. Want to know a secret? One thing people say that gets under my skin is: "Everyone's been tired before!" and "You're heart rate gets up high when you exercise, why would it bother you now?"  Ignorance sucks!

24. But I love it when people: Don't make a big deal about it if I fall.

25. My favorite motto, scripture, quote that gets me through tough times is: "But tomorrow's another day, and I'm thirsty anyway, so bring on the rain." ~Jo Dee Messina

26. When someone is diagnosed I’d like to tell them: I'm not sure, really.

27. Something that has surprised me about living with an illness is: How lonely it is.

28. The nicest thing someone did for me when I wasn’t feeling well was: My DH (Darling Husband) gave me my Valentine's Day presents a day early. ❤

29. I’m involved with Invisible Illness Week because: It's important to spread awareness that not all disabilities are visible!

30. The fact that you read this list makes me feel: Honored!  Thank you very much!


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