invisible illness week 2013

This week is National Invisible Chronic Illness Awareness Week! In observance, invisibleillnessweek.com offers some great articles and podcasts for those with chronic illnesses and their caregivers. I encourage you to check it out.

Invisible Illness Awareness Week also encourages bloggers to complete the “30 Things About My Illness” questions below. I participated last year, and some of my answers remain the same.

30 THINGS ABOUT MY ILLNESS:

1. The illness I live with is:

dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS), Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS), mild gastroparesis, mild fibromyalgia, occipital neuralgia

Although that sounds like a long list, my doctors and I suspect they are all related. So, really, just one bastard of an illness.

2. I was diagnosed with it in the year:

First diagnosis came in 2005. The rest followed every few years.

3. But I had symptoms since:

2004 for gastroparesis, 2009 for everything else.

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

redefining what a “life” is. Walking down the aisle at my wedding, having children, getting work promotions, etc., were how I imagined life would be when I grew up. Now, I’m forced to come up with a new definition.

5. Most people assume:

I don’t know what most people assume. That I’m awesome?? 🙂

6. The hardest part about mornings are:

My symptoms are typically worse in the morning, so just the simple acts of getting ready for the day are hard. I take cold showers and have to sit down while I dry my hair. My heart rate doubles walking the 20 ft from my car to work.

7. My favorite medical TV show is:

I don’t watch medical shows, but thanks to my new Roku box, I have been watching some pretty great shows lately. My favorite is the local PBS channel with shows about San Diego history, restaurants and places.

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

Same as last year – my Nexus 7 tablet. I’ve turned into a big gaming nerd on that thing. Simpsons: Tapped Out, level 34! What up!

9. The hardest part about nights are:

Adrenaline surges. I wake up ready to beat the shit out of something or run a marathon. Granted, my body isn’t capable of doing either, but my mind forgets that sometimes.

10. Each day I take __ pills & vitamins.

The number I actually take, or the number I’m supposed to take? I take 8 and 1/2. I should be taking more, but right now I am opting not to.

11. Regarding alternative treatments I:

think it might be time to seek out some alternative treatment for the back/neck pain I get. I previously went to physical therapy and that wasn’t much help. If you get some kind of treatment (e.g., acupuncture, chiropractic, reiki or other treatment) for pain, I’d love to hear about it.

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

Last year I answered visible. This year, I’m going with invisible. Not every person in the world needs to know I’m ill.

13. Regarding working and career:

Same as last year – I still work as an attorney, it’s still a challenge going to work. My employer doesn’t offer healthcare or paid time off (for when I’m at the doctor), so it’s not the easiest job to have right now. However, I am able to work from home a lot, and that has been my saving grace.

14. People would be surprised to know:

I’m probably happier than I seem. My illness sucks, but my life doesn’t.

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

Accepting that there are some things I won’t ever be able to do again. Understanding is one thing. Accepting it is another.

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

I promised you I’d have a better answer this year and unfortunately I don’t. But next year, I promise.

As for this year, I flew on an airplane by myself. It was only an hour flight and it was absolutely awful, but it’s an accomplishment nonetheless.
17. The commercials about my illness:

There are none, but I’m thinking about starting my own advertising campaign. Diabetes has Wilford Brimley, bladder leakage has Whoopi, breast cancer has the entire NFL….who should we get??

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

Being social. I can still hang out with friends now, but after a little bit, I’m ready for a nap. I miss days at the beach, or dinner and drinks into the early morning. Only my friends’ kids and I are in bed by 8:30.

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

beer. Seriously, I have dreams about its deliciousness still.

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

started tai chi about a month ago and really like it.

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

Travel around the world. And, if I’m being totally honest, probably get drunk.

22. My illness has taught me:

(sticking with my answer from last year) 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) “I wish I could work half days or could nap all day.” Really? Because I wish I could go to an office everyday and make a difference. Remember, it’s not like we stay home when it’s time to work, but we’re out partying and having fun the rest of the time. I spend a lot of the weekend sleeping just so I can get up and go to work Monday morning.

24. But I love it when people:

Treat me like I’m human.

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

“Courage doesn’t always roar. Sometimes it’s the little voice at the end of the day saying, ‘I will try again tomorrow.'” – Mary Anne Radmacher

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

I’m going to give it to you straight – illness sucks. It does. It’s a shitty situation, and you don’t deserve to be in it.  Being ill is a tough journey, but there are others to help you along the way. Let them. Be afraid, be upset, cry, scream….allow yourself to feel whatever it is you feel. But don’t lose sight of the world. It will get better.

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

same answer as last year – 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. Honestly, it has restored some of my faith in mankind.

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

i am blessed with wonderful friends and family, and a very supportive (and handsome) BF, so I have been the recipient of many nice things.

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:

impressed that you made it this far 🙂

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!

Smell ya later.
– Linds

Related articles

• 30 Things You May Not Know About My Invisible Illness (myjourneythrume.wordpress.com)
• Invisible Illness Week: my 30 things   (elleandtheautognome.wordpress.com )