Meme: 30 Things About My Invisible Illness You May Not Know

As part of Invisible Illness Awareness Week (IIWeek), I've taken some of the challenges, including this 30 things Meme. We're encouraged to make this list yearly as part of IIWeek, but I have not done it since 2009. Here is a link back to that first list (and only list) I made. I have yet to re-read it myself. I remember how painful it was to write, but how powerful it was to share it.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Dysautonomia (also known as Autonomic Nervous System Dysfunction). I have two forms: Postural Orthostatic Tachycardia Syndrome and Neurally Mediated Hypotension. I also have Chronic Fatigue Syndrome (CFS/CFIDS), which often overlaps with Dysautonomia; Gastroparesis, which means I have slow stomach motility; and Thoracic Outlet Syndrome (TOS), which causes neck pain, arm weakness, and an inability to lift my arms above my head.

2. I was diagnosed with it in the year: My first diagnosis of POTS came in 1999. My most recent diagnosis of TOS came in 2013.

3. But I had symptoms since: It's hard to know. During the beginning of my sophomore year of high school I missed almost 2 months of school due to a mystery illness. Looking back we wonder, was that the beginning of my struggles with Dysautonomia? 

In college, I came down with mono after at the end of my first semester of college. Had it not been for a roommate (Loralea) who made my bed, took my laundry to and from the laundry service, asked hall mates to quiet down so I could sleep, and a major cutback in extra-curricular activities I wouldn't have been able to return to school. Was this the beginning of my Chronic Fatigue Syndrome? 

By the end of college, I was doing two things: sleeping and studying. One month later, on June 18, 1998, I became completely incapacitated by symptoms of CFS and Dysautonomia. I have never recovered to my previous levels of functioning.

Dahlias

4. The biggest adjustment I’ve had to make is: getting used to the loss of freedom in every capacity of my life--from driving to financial independence to the freedom to move in my body to the freedom to be spontaneous to the freedom to live independently to the freedom to get lost in time to the freedom to eat certain foods.

5. Most people assume: That when I look good, I feel good. That if I look good, I am symptom free. That I have a lot of time on my hands. That my life is not stressful. That I can't figure out how to 'fill my time' because I have 'so much of it.'

6. The hardest part about mornings are: Missing out on them. My alarm goes off at noon. The only 'morning' I know is the wee hours of the morning--when I'm listening to an audiobook at 1 AM, or turning my light off sometime around 2 AM. When I do get up in the morning, even with a nap later in the day, I feel sicker the rest of the day.

7. My favorite medical TV show is: I don't watch any medical dramas. The medical drama of my life, and that of my friends, is enough. :)

8. A gadget I couldn’t live without is: I LOVE gadgets. I'm a gadget girl. I've found that gadgets, when used well, enhance my life--I really do love my laptop, my iPad, my iPhone, my camera, my iPod, my TV, and my adjustable Tempur-Pedic bed. :)

Market Bouquet: Dahlias, Gladiolas and Lemon Verbena

9. The hardest part about nights are: That I have such difficulty falling asleep, so am up until the wee hours of the morning, which can be a lonely time. I try to savor the quiet, cuddle with the dogs and listen to a lot of audiobooks. I don't sleep well at all and tend to be restless all night long--aware of my dreams and of being in and out of sleep.

10. Each day I take 38 pills and vitamins. (No comments, please): 27 of the pills I take are pharmaceuticals, 11 are supplements. I also take one liquid medication four times daily. It's important to remember, I think, that many of the medications are needed multiple times a  day so, for example, I take midodrine every 3 hours 4x/day. This adds up to 11 of my 27 pills. 

11. Regarding alternative treatments I: find some to be very helpful, and some to be not at all helpful. I'm a careful consumer. I'm a fan of massage (static myofascial release, lymph drainage, zero-balancing, etc.), acupuncture, naturopathy, using food for healing, aromatherapy, and some supplements. 

12. If I had to choose between an invisible illness or visible I would choose: If I'm going to feel this 'unwell' either way, then I would choose invisible. It's one less battle to fight sometimes. If the illness was visible, but less life-altering, I'd pick visible.

I Love Dahlias!

13. Regarding working and career: I will cross that bridge if it comes my way. Until then, I will write and live my life to the fullest. As my dad says: "the last thing I need to be worrying about right now is working." 

It upsets me when people ask me what I will do when I get better or if, now that I am feeling better, I am able to work. More than anything I want to reach a place of being independent as much as possible--preparing my own food, keeping up with my own laundry, taking care of the dogs, etc.

Working and career are far from my mind--not because I have no ambition, but because my ambition has changed with being sick. Right now, being sick, living well with illness, and doing all that I can to maintain/improve my health is a full-time job.

A Sprig of Lemon Verbena to Add Fragrance. Glorious!

14. People would be surprised to know: that I still wake up every day a bit surprised that I am sick. And that I really like to use swear words to let out steam. Even the F-word.

15. The hardest thing to accept about my new reality has been: missing out on the life transitions and events that most people my age experience--jobs/careers, marriage, family, home ownership, travel, etc.

16. Something I never thought I could do with my illness that I did was: Have this much perseverance and resilience. 

17. The commercials about my illness: Yeah, right. Until this illness is taken seriously or there is a blockbuster medication for it, no commercials will exist.

18. Something I really miss doing since I was diagnosed is: getting lost in time no matter what it is I am doing--feeling free in my body to get lost writing, walking, dancing, creating.

Think I Need to Grow This!

19. It was really hard to have to give up: being a mom

20. A new hobby I have taken up since my diagnosis is: Blogging

21. If I could have one day of feeling normal again I would: Spend it with those I love most--laughing a lot, eating wonderful food, having an alcoholic drink, being at a location by the water, engaging in a fun physical activity like swimming with the dolphins, scuba diving or a hot air balloon ride, watching the sunset, and dancing to great music. 

22. My illness has taught me: a LOT about gratitude; the importance of and value of nourishing and maintaining relationships; that someone may be suffering on the inside even though it might not be immediately apparent...and about a bazillion more things! 

23. Want to know a secret? One thing people say that gets under my skin is: "You're too young to be this sick." That, and just about any platitude!

24. But I love it when people: Take time out of their busy lives to slow down and send snail mail, a text, an email, recommend a book or music, or send a surprise gift; read my blog and comment on it; listen; show amazing grace and compassion; find a way to include me in their lives--even if it looks different than we had hoped or wished (i.e. a video from my niece Lana in place of me being able to visit her in person; being asked to be a bridesmaid even if I can't attend; taking pictures of an event for me that I wish I could attend, etc.); go the extra mile to make a get-together happen (anticipating dietary restrictions, the time of day I am awake, or coming over to my house so I don't have to get a ride).

25. My favorite motto, scripture, quote that gets me through tough times is: "Dance is the hidden language of the soul." --Martha Graham-- and "Hope is the thing with feathers that perches in the soul and sings the tune without words and never stops at all." --Emily Dickinson--

Gorgeous Bouquet

26. When someone is diagnosed I’d like to tell them: "Don't take no for an answer. Listen to your body," as a wise doctor told me six years into my illness and "You're not alone." I'd like to be able to say that getting diagnosis and treatment has gotten easier since I first got sick 16 years ago, but it hasn't. So, I offer my compassion, my friendship, and my listening ear, and any tips I can offer to make her journey easier.

27. Something that has surprised me about living with an illness is: How freaking hard it is--emotionally and physically. And that it is a full-time job!

28. The nicest thing someone did for me when I wasn’t feeling well was: People lift me up in different and unique ways--I can't pick the 'nicest' one. My mom always makes me homemade chicken soup. :)

29. I’m involved with Invisible Illness Week because:  I think it matters. I want to find ways to advocate more for others. Invisible Illness is still so completely invalidated and misunderstood. 

30. The fact that you read this list makes me feel: grateful, humbled, happy, blessed.

Blessings,

Emily