“30 Things Meme” – 30 Things About My Chronic Illness

Last year hundreds of people participated in our “30 Things Meme.” We’d love to hear from you again (A new year may bring new answer, so even if you filled this out last year, we would love to see your answers this year, as well! ).

This is a great way to blog about your invisible illness too. We may say, “No one understands!” but have we really given them the chance to?

Copy the 30 things meme below, fill it out, post it on your blog or on Facebook, etc. and then let your friends and family know. You may even be surprised to find out who you know who is living silently with his or her own invisible illness.

And don’t forget to let us know about it! Fill out the form below (scroll down past the meme) with name of your blog and where the meme is posted so we can come read it!

Thank you for participating and spreading the word.

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

1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I’ve had to make is:
5. Most people assume:
6. The hardest part about mornings are:
7. My favorite medical TV show is:
8. A gadget I couldn’t live without is:
9. The hardest part about nights are:
10. Each day I take __ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career:
14. People would be surprised to know:
15. The hardest thing to accept about my new reality has been:
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness:
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
22. My illness has taught me:
23. Want to know a secret? One thing people say that gets under my skin is:
24. But I love it when people:
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Invisible Illness Week because:
30. The fact that you read this list makes me feel:

Popularity: 22% [?]

Press Release – Invisible Illness Week Team Offers Free Ebook of 263 Tips

* Feel free to share this on your blog, post it in your newsletter, whatever! Thanks for your help.

Invisible Illness Week Team Offers Free Ebook of 263 Tips

20 Experts share their best tips about living with a chronic illness, from coping with illness and relationship tips to travel and homeschooling.

San Diego, CA — (SBWIRE) — 09/01/2010 — National Invisible Chronic Illness Awareness Week is September 13-19, 2010. A free 80-page ebook is now available for download to anyone who signs up for daily updates from the web site invisibleillnessweek.com .

“Chronic Illness Tips: 263 Ways To Do More Than Just Get By” is by Invisible Illness Week founder, Lisa Copen and friends. Friends include chronic illness career specialist Rosalind Joffe, relationship expert and best-selling author Pam Farrel, advocacy authority Jennifer Jaff, and illness advocate Jenni Prokopy.

Over 20 contributors share their best tips to live successfully with chronic illness on a variety of topic. “These experts are people who have the credentials,” says author Lisa Copen, “but more importantly, they have experienced illness themselves or health issues of someone close to them. Their tips come from the experience of living with the challenges illness gives us.” The chapters include coping tools, relationship issues, career, faith, and practical tips, from traveling with an illness to homeschooling. There are also many tips on how to encourage someone who lives with a chronic illness.

National Invisible Chronic Illness Awareness Week is an annual event that features a free virtual conference online 9/13-17 with speakers each morning 10:30 – 12 USA Pacific time. There are a variety of ways a person can get involved including blogging for the cause, completing the Meme “30 Things You May Not Know About My Invisible Illness”, or joining the campaign on Facebook.

With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses.

For more information see http://InvisibleIllnessWeek.com .

Popularity: 4% [?]

Share About Your Life with Illness With Our “30 Things…” Meme

Last year hundreds of people participated in our “30 Things” Meme. We’d love to hear from you again (even if you filled out the 30 Things About My Invisible Illness You May Not Know last year, you may have some new answers this year… it will be interesting to see which ones!).

This is a great way to blog about your invisible illness too. We may say, “no one understands!” but have we really given them the chance to? Fill this out, post it on your blog or on Facebook, etc. and then let your friends and family know. You may even be surprised to find out who you know who is living silently with his or her own invisible illness.

Be sure to link up your Meme answers to our web site at the link above in the tan bar here.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I’ve had to make is:
5. Most people assume:
6. The hardest part about mornings are:
7. My favorite medical TV show is:
8. A gadget I couldn’t live without is:
9. The hardest part about nights are:
10. Each day I take __ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career:
14. People would be surprised to know:
15. The hardest thing to accept about my new reality has been:
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness:
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
22. My illness has taught me:
23. Want to know a secret? One thing people say that gets under my skin is:
24. But I love it when people:
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Invisible Illness Week because:
30. The fact that you read this list makes me feel:

Popularity: 18% [?]

When Abnormal Becomes The New Normal

Recently, a good friend of mine got mono. Whenever I’d read his status updates on Twitter or Facebook, I’d find myself slightly surprised at how limitations and symptoms that were new and foreign to him were completely typical for me. Can’t go to work? Can’t do errands? One activity in a day is too much? Trouble concentrating? His health was radically altered to resemble mine for a few weeks. It reminded me just how much I’ve had to adapt my lifestyle to my limitations. Dealing daily with abnormal health has become normal for me.

It’s not easy to understand chronic illness if you haven’t lived it. I’m always happy to find some kind of analogy for my daily struggles with dysautonomia in order to improve understanding and awareness. This dysfunction of my autonomic nervous system affects almost every system of my body. Symptoms range widely in type and severity from day to day or even hour to hour.

I can be doing ok one minute and flat on my back the next – quite literally. Describing these symptoms and feelings to another (healthy) person is just short of impossible, so sometimes I don’t even try. However, it can be helpful to use an analogy every so often, just to keep those around me in tune with what I cope with on a regular basis.

Tonight, I briefly visited the online support forum for my condition. One member made me smile knowingly when she posted that adaptation and adjustment to her limitations had left her forgetting what it felt like to be “normal.” She said that seeing people standing in 90-degree heat at a BBQ left her marveling: “What if they get overheated? How can they stand so long? How can they talk and not be short of breath?”

I share this sense of wonder when I see average people completing normal, everyday tasks with ease. I sometimes question how a person can have enough energy to get through a full day of work without immediately crash landing on the couch. For me, watching the average person function is akin to seeing a superhero leap tall buildings in a single bound. If I think back, I know that at one time I was healthy enough to do it all, but it’s as if I’m remembering a dream, not real life.

Standing is incredibly difficult for me because my blood pressure slowly drops the longer I’m upright. (To a lesser extent, this also happens with sitting upright.) Unless I shift my weight around, walk, or do something else to circulate my blood, my brain gradually runs out of oxygen the longer I remain standing still.

I used to have no analogy for this kind of feeling, other than a fogginess in my mind and a feeling of urgency to move or lie down. I mean, even though my brain is slowly being deprived of oxygen, I still look entirely normal on the outside. What do people think when I start to have trouble following their conversation or finding words? Do I look thoughtless when I ask a question they just answered 5 minutes ago? Do I appear stupid when I have to think hard about simple responses? Does it seem odd that I can walk over to greet someone but shift away uneasily while we converse? All these questions go through my mind.

Standing for me is similar to lifting a heavy weight above your head. At first, you can hold the weight up without much of a problem. Sure, it’s heavy, but it’s possible.

Then your arms begin to shake as your muscles fatigue. Soon, you can feel your body crying out to put this weight down. As you power through every message your body is sending you to STOP, you eventually find that you cannot will yourself to go on any longer. Your arms suddenly reach the breaking point and collapse under the weight that at first was manageable. It’s the same way standing feels to a person with dysautonomia. The initial stance may be manageable, but the longer I stand, the more urgently my body signals me to sit, sit, sit! If I ignore these signals for too long, I can eventually collapse.

Another problem that I deal with regularly is severe fatigue (usually with muscle aches). Saying these words makes it sound like a nice nap or a day in bed will have me back up in no time. However, my invisible illness is not cured by sleep, and in fact, my fatigue is often at its worst during the hours after I wake up! I have had a hard time describing this type of exhaustion to the average person. There is just nothing like it when you are young and healthy with endless energy. The closest description that matches this feeling is when you have the flu. The flu makes every single muscle in your body ache, and moving feels like you are fighting through molasses. People who have had the flu or even mono can understand this feeling.

When this crushing exhaustion is unrelenting for months and years, it is not possible to maintain a normal life. Imagine how having the flu disrupts normal life for a week or two. Now think about what it would be like to have the flu all the time. It’s important to remind others that even though I look normal, I’m actually putting forth 3 times the typical amount of effort to get through a particular activity, and afterward, I “pay” for an event with worsening symptoms for days after it’s over.

I’ve been thinking carefully about these analogies for some time, and I’m writing about them not to get sympathy, but to spread awareness of what it’s physically like to live in a body limited by chronic illness. Each person with chronic illness probably has a particular symptom that disables them more than others, and some are more severely disabled than others, but the result is the same – trying to operate as normally as possible while feeling very far from normal.

Next time you meet someone who seems confused, distracted, or has trouble following your conversation… next time someone tells you they are just too exhausted to make it out… next time you meet someone with a chronic illness, remember that though they may appear normal, it’s quite possible they are fighting through physical suffering greater than you could ever imagine.

National Invisible Chronic Illness Awareness Week is revealing the struggles behind the smile.

Kristen first experienced chronic illness at the age of 17. Due to serious mold and pesticide exposures, her nervous system and immune system became damaged, leaving her chemically sensitive and unable to maintain her summer job or to remain at her first college.

Due to disability accommodations, a healthy amount of determination, and God’s generous favor, she moved back home and went on to earn both a Bachelor of Science and a master’s degree in biomedical engineering. By that time, her symptoms caught up with her, and just before graduation, she was incapacitated with what was diagnosed as POTS/dysautonomia.

This dysfunction of her autonomic nervous system left her struggling to sit up, stand, or walk, and she had to adapt to a new normal. Now 28, she lives within her limitations, working part-time from home, and learning how to depend on God more than ever before. Read more at her blog.

Popularity: 2% [?]

Social Networks Help Lots!

Perhaps one of the biggest changes in the last couple of years is the ability to spread the word about causes you care about to people who are your friends or family members.

We are excited about all “the talk” going on in social networks and hope that if you have friends, family, co-workers, people who you know have illness, etc. you will share our Twitters with them, our videos, links to last year’s seminars, etc. Nearly everything we do has a “tweet this” or “share” button on it, so if you see a page here on the blog that you think others should know about, please don’t hesitate to share it!

Here are some places you will find us! The bigger net we cast, the more people are we are able to reach. We hope you will help us cast a few nets.

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FACEBOOK

Facebook gets it’s own category due to just how much you can do here.

• Join our Facebook “Fan/Like” Page here!
• Sign up for Invisible Illness Awareness “Cause”  – click here
• Do you like groups on Facebook? Well, we’ve got one just for Invisible Illness Week! Join the Invisible Illness Awareness Week Group here
• if you want to stay in touch with whatever Rest Ministries is doing (the founder of this week!). – click here
• Note that on almost any page here, video, etc. you’ll see something that says “share.” If you are involved on Facebook, we’d love it if you would share any inf0rmation with your friends. Even put it on your calendar to post something like a link to an article, each week.
• Give II Week Gifts to people. If you are familiar with Facebook this concept may be familiar. - click here for II Week gifts
• Give someone some flair! - click here for our II Week Flair

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TWITTER & OTHER CONTENT

Twitter is a great way to stay in touch with whatever your passions are. We have a Twitter account just for Invisible Illness Week at www.twitter.com/invisibleillwk . You can also find out about everything Rest Ministries at our founder’s Twitter: www.twitter.com/lisajcopen .

How can you help through Twitter? Many people are just joining and a bit unsure how to use it. Here are some ideas:

• We have an entire web site for Invisible Illness Week Tweets. You can use anything on this site in your tweets, or follow us and ReTweet what we are tweeting (that means you copy what we are posting and in the front of it put RT @invisibleillwk
• On nearly every page of our web site we have a “twit this” button. Click it and tell your followers!
• Join our Twitter Groups for Invisible Illness Week. You can also find more interesting people to follow this week.
  • Invisible Illness Week Tribe

FRIEND FEEDER

I know I’m not all that interesting but it seems some people want to know what I am up to. If you’re one of them, you can see what my twitters and facebook posts, etc. say at friend feed. Join our Friend Feed Group for Invisible Illness Week

Friendster is a lot like friend feed.

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CONTENT

You can copy and paste code into your site, blog, etc (called a widget) and then you will receive our feeds.  We have widgets for Invisible Illness Week, II Week Tweets.

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OTHER SOCIAL NETWORKS

Are you on MySpace? If so, click here to add us as a friend. A lot of people with chronic illness hang out over at MySpace and in 2007, three months before Invisible Illness Week about 8000 people came to our web site through our page there. So… it’s worthwhile to have and connect with others.

Squidoo is a fun place to get a bunch of information on one page. If you visit, be sure to add a comment, vote for our page, etc. It all helps in the rankings.

Ning.com is where we host our Rest Ministries Sunroom an in the Sunroom we have an Invisible Illness Week Group. Come hang out with us here and find tons of great friends. If you are involved in other Ning.com groups be sure to post our Invisible Illness Week video, blog about Invisible Illness  Week, etc.

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PODCASTS AND VIDEO

Blog Talk Radio is where we have all our seminars hosted. It’s like a live radio show online, but the programs are also archived so you can listen any time. If you click on our Invisible Illness Week Blog Talk Radio link you will still see (and be able to listen) to all 19 programs from last year. When you are there be sure to click on anything! Make us  a favorite, get show reminders, “share” a specific show with friends. The more people click the higher we rank in their web site and the more people we can reach.

All of our radio programs are available for free at itunes too! Just click on this itunes link and it will take you right to them. The biggest perk? You can download them your ipod and listen to them while out walking or maybe when you are stuck in bed.

We have Invisible Illness Week videos available. These are great to share and the one for 2009 can even be purchased on DVD if you want to show it in high resolution for an event, church service, etc.

Tangle is another video place, but it’s a Christian site! We have some of our videos featured.  We are currently setting up our account here.

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BLOGGING

We’ve partnered with Bloggers Unite, an organization that helps causes like ours know who is blogging for them on their topic or cause. If you will help us out by posting at least one blog about Invisible Illness, it’d be great if you would sign up here so we know who you are and can make sure to let others know too! Be sure to get the badge that says, “I’m blogging for Invisible Illness Week” here!

We’re listed in Blog Catalog so more people can find us! If you are a blogger and listed here too, let’s connect!

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CAUSE-RELATED SOCIAL NETWORKING SITES

At my-cause you can click a button that says you are a supporter and also copy and paste some code to get this badge below to put anywhere on your web site, blog, etc.

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Meet Others w/ Invisible Illness

There are various ways you can connect with others involved with Invisible Illness Week!

• Join us in the Sunroom to get to know other participants of National Invisible Chronic Illness Awareness Week
• If you’d rather not be in a specific Christian group, we recommend joining the II Week group at Illness Twitters (but you should have a twitter name to make the most of this group)
• We also have a Facebook Group and a Facebook Cause for Invisible Illness.
• Follow us on Twitter
• Follow our founder’s blog tour through over 60 blogs on illness topics.
  

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