invisible illness week: 30 things about me…

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 participate by blogging about the theme for the year, or posting this “30 Things About My Illness”. The theme this year is #invisiblefight, which I think is a wonderful theme, but which, for some reason, is leaving me speechless. Sure, it’s difficult fighting an invisible fight, but aren’t we all doing that? Whether it’s illness, abuse, war, poverty, family issues – aren’t we all battling something? Isn’t it one of those few things that all humans universally suffer?

October is Dysautonomia Awareness month, so this is also a great opportunity to help raise awareness. I completed this survey a couple years ago, and many of my answers remain the same. Friends, if you’re so inclined, please share your responses to the questions below, too!

30 THINGS ABOUT MY ILLNESS:

1. The illness I live with is:

gastroparesis, dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS), migraines, mast cell activation (MCAD), and most recently, a currently undiagnosed problem with pain and numbness in my legs

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 except the leg pain, which came in May of this year.

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

honestly, everything is an adjustment. some big, some small.

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. I’m nauseous but have to eat something in order to take medication. My heart rate doubles walking the 20 ft from my front door to my car.

7. My favorite medical TV show is:

I don’t really watch medical shows, probably because i spend a lot of my free time reading medical websites and journals online. just like i don’t watch lawyer shows, since i spend a lot of my non-free time lawyering.

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

I could live without all gadgets, but I do love my tablet. I love that I can watch Netflix, read a book and play games all on the same device. I’ve become quite a gaming nerd, so if you play (as the BF calls them) vegetable crush, fish crush, sugar crush, the battle game or the trivia game, let’s be friends.

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.

Cromolyn every day, and a quarter of a beta blocker every other day. Working on getting that one down to zero.

11. Regarding alternative treatments I:

still think acupuncture might be worth trying, but still haven’t tried it.

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

Invisible. Not every person in the world needs to know I’m ill.

13. Regarding working and career:

Same as last time – 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 sick or at the doctor), so I don’t ever take a sick day. However, I am able to work from home a lot, and that has been my saving grace.

14. People would be surprised to know:

Occasionally, I’m actually glad that I have an illness. I’m a better person because of it. Although, there is something to be said about being an illness-free asshole, too…

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 have a few this year – stood throughout my entire wedding and flew to Hawaii. Of course, I also bought a walker and started using a wheelchair occasionally. It’s been a year of ups and downs.

17. The commercials about my illness:

Still none.

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 9:00. (As a side note, last time I completed this, I said “in bed by 8:30”, so I’m like a crazy party animal staying up until 9 these days.)

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

traveling. I have to figure out a way to see more of the world. I’m just not ready to be done.

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

blogging? multiple-nap days? putting salt on everything?

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 really drunk.

22. My illness has taught me:

That every day I’m able to walk should be a good day.

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 in the world. 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:

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. I have a few chronically ill friends with whom I email regularly but have never met in person.  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:

less alone.

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