invisible illness week…

This week is National Invisible Chronic Illness Awareness Week! In observance, this website is putting on a virtual conference all week with some great speakers on topics that pertain both to the chronically ill as well as their caregivers. If you have a free moment this week, you may want to check it out (it’s free).

The virtual conference is also encouraging chronically ill bloggers to share the 30 things below to help make invisible illnesses visible.  I’m honored to take part and share a bit of my personal story with you.

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

1. The illness I live with is:

Postural Orthostatic Tachycardia Syndrome (POTS)/Dysautonomia, Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS)(it’s actually part of my POTS, but was diagnosed before being diagnosed with POTS), mild gastroparesis (as part of my POTS), occipital neuralgia. Had hypertension in the past, but it went away on its own – not sure if it will return.

2. I was diagnosed with it in the year:

I was diagnosed with POTS in February 2011.

3. But I had symptoms since:

Hypertension began in 2001, gastroparesis symptoms in 2004, POTS in 2009.

4. The biggest adjustment I’ve had to make is: 

to accept and deal with the symptoms. For the first year or so, everytime I had chest pain, heart palpitations and/or left arm numbness, I went to the ER or Urgent care. Every new symptom would result in a call to my doctor. Now, I just learn to deal with it. The ER doesn’t do much to help my condition, and its too fricken expensive.

5. Most people assume:

I don’t know about “most”, but many people assume I’m lying (cough: doctors: cough) because my illness is invisible.

6. The hardest part about mornings are:

showers and fatigue. I used to love long, very hot showers. Now, I take cold showers because I don’t handle heat well. I don’t balance very well, so I have to be careful not to fall. I’m in and out in about 5 minutes, anything longer and I’ll have to sit down. Shaving requires a second shower later that day. I should get a medal for still bothering to shave my legs 🙂

7. My favorite medical TV show is:

I don’t watch much t.v., but I still like Scrubs reruns.

8. A gadget I couldn’t live without is:

My new Google Nexus tablet I received for my birthday! I can watch Netflix movies, manage my blog, read a book, play games, read the news and waste time on Facebook, all from my bed!

9. The hardest part about nights are:

The low, low heart rate and occasional adrenaline rushes or insomnia. And, not being able to stay awake until a normal 30-something year old bedtime.

10. Each day I take __ pills & vitamins. 

13.

11. Regarding alternative treatments I:

am open minded.

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

I think I would choose visible. I’m sure people would stare and pass judgment, but I also think they’d be more compassionate. Probably one of those “grass is greener…” scenarios, though.

13. Regarding working and career:

I work as a lawyer, but my illness makes it challenging. Even just sitting at a desk, without having to stand or walk much, I struggle to stay awake and ignore the pain and palpitations.

14. People would be surprised to know:

that I often worry about how my illness affects those around me.

15. The hardest thing to accept about my new reality has been:

that this is the rest of my life. I can deal with anything temporarily, but it has been difficult to accept that this is not temporary.

16. Something I never thought I could do with my illness that I did was:

honestly, I don’t have a great story for this. Some of the other bloggers have accomplished amazing things, like races or marathons. I went to Arizona when it was over 100 degrees and was able to function (I don’t do well with heat), but that’s all I’ve got. I’ll work on getting you a better story….ask me again in a year 🙂

17. The commercials about my illness:

Hahaha, what commercials??

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

traveling. I haven’t been on a plane in over a year and a half, and haven’t been on a vacation in over 5 years.

19. It was really hard to have to give up:

going to the gym. I used to be somewhat of a jock, at the gym regularly. I was in shape and fairly lean. Now, I ride a recumbent bicycle and lift light weights, but I can’t work out like I used to, and I have to monitor my heart rate. As author Toni Bernhard said, “The very activities that bring us the greatest joy are also the activities that make our condition worse.” True story.

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

Does napping count? 🙂 I’ve started making bracelets. I don’t really know why, but I’m having fun with it. I’d like to learn to knit, so that will be my next hobby.

21. If I could have one day of feeling normal again I would:

Travel around the world.

22. My illness has taught me:

to be less judgmental. I used to wonder why, for example, a (seemingly) healthy person would take an elevator up one floor. Now, I’m that person. I’ve learned that we’re all fighting our own battles, whether or not others know it.

23. Want to know a secret? One thing people say that gets under my skin is:

1) When people say that because I’m out doing x (e.g., working, shopping, going out to eat, etc.) that my illness must be better. Apparently people with chronic illnesses are never allowed to be out in public.

2) When people say something along the lines of how it’s the medicine I’m taking that’s making me sick, or that I could cure myself by just thinking positive thoughts.  My condition was definitely worse before I started medications. Now, my heart rate doesn’t double or triple everytime I stand up. And, I do try to think positive thoughts, but when you’re in such bad pain that you actually wonder if jamming an ice pick in your head may relieve some of the pain, it’s hard to daydream about rainbows and unicorns.

24. But I love it when people:

I love an occasional, simple “how have you been feeling?”  That leaves the window open for me to share if I want to, or move on to happier topics if I’m not in the mood. I don’t ever want all of my conversations to be dominated by my illness, but I also don’t want it to be invisible.

25. My favorite motto, scripture, quote that gets me through tough times is:

“You cannot run away from your weakness; you must fight it out, or perish. And if that be so, why not now, and where you stand.”
– Robert Louis Stevenson

“Our life is always all right. There’s nothing wrong with it. Even if we have horrendous problems, it’s just our life.” – Jojo Beck

26. When someone is diagnosed I’d like to tell them:

It’s okay to feel sad or angry….whatever you’re feeling, it’s okay to feel. But, it will get better.

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

how wonderfully supportive the chronically ill community is. People I’ve never met ask how I’m doing, share their personal stories with me, listen to me. Even if we don’t have the same illness, all the people I’ve talked to have been so caring and compassionate.

28. The nicest thing someone did for me when I wasn’t feeling well was:

A few years ago, I was taken to the ER. The BF stayed with me and held my hand the entire time. After I was released, he took me back to my place and insisted on spending the night watching over me to make sure I was okay. I told him to go to sleep, that I would wake him up if anything happened. At one point, I woke up in the middle of the night to find him sleeping next to me, but he was sitting up, still fully dressed, with the t.v. on. I know he watched over me all night until he couldn’t stay awake any longer.

29. I’m involved with Invisible Illness Week because:

I think it’s a great way to bring much needed awareness to the struggles others endure. The illness is invisible, not the person.

30. The fact that you read this list makes me feel:

a little less alone ( I stole this from another blogger).

Thanks for reading. Fellow bloggers, I encourage you to copy and paste the questions to your blog and fill them out (and put up your link here so I can read your answers, too!). Happy National Invisible Chronic Illness Awareness week to all!

Stay tuned.
– L