Most of us with a debilitating chronic illness, if asked, would admit that as we traveled along the journey of life, we never saw this train called “Limitations” coming and if we had, we certainly would moved heaven and earth to get out of the way. As children we dreamed of what our lives would hold and who we would be, encouraged by those who loved us to dream big and wide. But what do you do when the life you have so carefully been creating and carving out begins to fall apart around you because of your illness?
What happens when you are no longer able to hold down a job five days a week, so you go to four, then three, and then even two becomes too much.
I was there four years ago and it was the scariest and loneliest time of my life. After twelve years of being sick, I could no longer manage many of the simplest tasks of daily living, which included holding down a steady job. Eventually, my disease, which was undiagnosed at the time, progressed to the point that I was unable to hold my arms above my head for five seconds at a time or walk more than a few hundred feet.
However, mounting medical bills and household bills still had to be paid. After pushing my body to it’s limits—I finally conceded that I had no choice but to recreate my lifestyle and find a way to work from home.
While some may see this as a luxury, for many with chronic illness it is the only way we can survive. What and how recreating your lifestyle looks like will be dependent on many factors:
- Your current field of work: Is it suitable for a work-at-home environment?
- Your relationship with your employer: Are they flexible?
- The way your home is set up: Do you have room to work from home?
- Your financial situation: Do you have funds set back to start up a small business if needed?
- Access to equipment: Do you have a dependable computer/laptop, printer, phone, etc.?
- Your abilities: What are your talents, gifts, and skills that you could use to start a small business from home that would work with your physical limitations?
Once you have carefully taken all these factors into consideration, you can begin putting a plan into place that works for you and your family. As you recreate your lifestyle, the challenges you live with on a daily basis won’t go away—but they will become more bearable. When your body is wracked with pain, you can work in your pajamas propped up in a cushiony bed. Instead of sitting at a desk in an office chair all day, you can create a “desk” space around a sofa that is more comfortable with a laptop and a laptop stand.
I started transitioning into this change in 2005, and made the permanent lifestyle change in 2007 when I opened my business, Hilton Head Nannies. Having a chronic illness and living with daily challenges, pain, and limitations certainly isn’t the life I signed up for when I dreamed about my future as a child long ago. However, I am a firm believer that there is a purpose in every serious/chronic illness and a story to be told as God’s plan unfolds. I am still learning to embrace God’s plan for my life. Each day as I turn to Him and ask for His help in recreating my lifestyle, I am finding joy, peace, and hope that break through the disease and pain and make me dream like a child again.
God bless you as you pray about what He has in store for you! Jeremiah 29:11 says “For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’”
Jennie Krogulski resides in beautiful Bluffton SC, just off the coast of Hilton Head Island. She lives with Dermatomyositis, Fibromyalgia, Toxoplasmosis, Hypothyroidism, and an iron absorption disorder. Jennie owns Hilton Head Nannies, a national placement agency, and most recently started a social services agency—Lowcountry Family Connections. Jennie delights in spending time with family & friends, and being “Jen Jen” to the many children in her life.
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Thank you for letting someone find a note that let’s them know someone believes in them.
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By Tiffany Christensen
Before writing this, I wanted to look up the definition for the term “mindfulness.” It is language I am using more often and the basis for this blog entry. However, it took me seconds (via google and wikipedia) to learn the term has many meanings and I could not find a definition for how I use it personally. Hmmm. Did I make it up and all this time I have been misusing this term?
Either way, mindfulness as I defined it somewhere, somehow, along the way is being aware of oneself (internal and external awareness) while also being aware of how one’s actions, speech and thoughts might effect others. For me, this primarily means the people I care about because I feel far to overwhelmed when I consider being mindful of everyone on planet earth!
So, with this approach in mind, I find myself with a question for my blogging friends.
There are so many people in my life who are suffering. Many of them are friends I don’t know IRL (in real life) but their struggles permeate my thoughts often despite the lack of physical presence. In addition, people in my RL are struggling in a variety of ways. Primarily I am referring to physical struggle, serious illness etc, but at times this can mean emotional struggling also.
More and more, I find myself feeling a compulsion to hide or downplay the sweet parts of my life. It is not that I don’t have struggles, I do, but they pale in comparison to the people I know living day to day for another breath.
This compulsion comes from a place of “mindfulness” as I define it. It seems hurtful to me to sing the praises of my life when I know others are suffering so. I feel as though I should keep any of my good fortune to myself out of respect to those who are sad, scared and hurting.
I suppose I have some silly notion that when everyone is “all better” and the suffering is gone, I will again shout from the rooftops my love of this life. But, of course, the suffering will never end. One person will recover and another will suffer. This is life. One day the suffering will be mine again.
So, am I ridiculous? Can you relate? Am I on to something or out of my mind?
When you are suffering, do you like to hear of the joy in other’s lives or is it like adding insult to injury?
Should I follow this instinct I have and practice my made up version of mindfulness or should I share my happiness even with those who currently suffer?
What do you think?
After spending over 30 years in and out of hospitals, Tiffany Christensen realized that she had a lot of practice at being a patient! After getting her first lung transplant for cystic fibrosis, she found herself waking up in ICU with another set of donor lungs only 4 years later. She is the author of “Sick Girls Speaks” and “We are the Change: Transforming the Healthcare Experience through Partnership”, a speaker and a patient blogger at Sick Girl Speaks.
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When you see an elderly person coming toward you in a wheelchair, do you ever make eye contact with the person pushing the wheelchair? Who notices the caregiver? Do you give them a greeting, a smile of encouragement for their difficult days?
The almost invisible caregiver. (by Cecil Murphey)
Years ago, two of us stood talking outside a theater. A man pushed a wheelchair past us. Although we continued our conversation, both of us watched. He stopped next to a dark blue Honda, unlocked the passenger’s door, and helped the woman in the wheelchair stand up. Even from twenty feet away, it was obvious that her pain made it difficult for her to move. Once the man helped her inside, he folded the wheelchair, put it in the trunk, got in on his side and they drove off.
“Poor woman,” I said. “She must live in terrible pain.”
After the car drove away, my friend said, “I’ll bet you could describe the woman in the wheelchair, couldn’t you?” After I nodded, he said, “But I’ll also bet you don’t remember nearly as much about the man, do you?’
“Why, he was- “Then I realized I had hardly noticed him. He was just an older man.
Since the, I’ve realized that’s how many of us view such couples. The caregiver easily becomes a non-person. The sick one receives the attention and the concern.
From: My Parents, My Children, Spiritual Help for Caregivers by Cecil Murphey; Reprinted as a blog post form http://www.nursevirginiablog.com. Used with permission. Westminster John Knox Press, Louisville, Kentucky
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- Online Resources for Caregivers of Alzheimer’s Patients (distance-education.org)
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* 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
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 .
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Are you on Twitter? We have over 2000 followers of us on http://www.twitter.com/invisibleillwk.
[And if you do Twitter about your illness you may want to join a group Lisa started Illness Twitters .]
There are lots of things to tweet about Invisible Illness Week! We have tweets for. . .
- 20 Things to Say to a Chronically Ill Friend
- 20 Things NOT to Say to a Chronically Ill Friend
- 25 Illness Facts in 25 Days
- If Your Friend is Ill Tips (27 of them)
- Friendship Tweets
A quick way to find any tweets about Invisible Illness Week is to search twitter for #iiwk10 which is our hashtag. If you do any tweets on II Week, be sure to put #iiwk10 somewhere in the tweet so people can find it later when they search.
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This is my first year as a member of Rest Ministries and this is also my first year participating in the Invisible Illness Week.
This past Monday I had to make a trip to the post office to mail a letter and as I walked into the lobby I looked over my shoulder and saw a bulletin board. The cork bulletin board contained many different items pinned to it such as business cards, flyers advertising vehicles for sale, information offering baby sitting services, church concerts, tutoring and more.
As I was looking at the different items posted on that cork bulletin board I giggled and thought to myself, as Lisa Copen would say, I’m feeling a little mischievous!
I had just placed a few packs of post it notes in my purse along with a couple of Sharpie pens right before I left to mail my letter. I borrowed them from my daughter because she is “The Post It Note Princess” in our house. She leaves them everywhere and is very fond of the bright, flourescent colored post it notes.
I had a pack of every color. . . red, orange, yellow, neon green, blue, purple, and pink. I began to write messages of encouragement on the first post it note of every pack, a total of seven notes, stuck a push pin in each note and lined them up to form a nice little rainbow in the center of the bulletin board.
I stood back and smiled at my Rainbow of Encouragement. The only thing missing was my camera. I wish I could have taken a picture of it to share at invisibleillness.com.
I quickly forgot about the camera and thought to myself, I have no idea if anyone will take one of these notes, but I am sure that my Rainbow of Encouragement will definitely grab someone’s attention!
I returned to the same post office to mail a package today. I walked into the lobby and glanced over at the bulletin board and guess what?
My Rainbow of Encouragement was gone! Every little vibrant colored, encouraging post it note was missing! I smiled and thought to myself, Thank you God, I guess My Rainbow of Encouragement actually turned out to be Your Rainbow of Hope because at least seven more people who have an invisible illness will come to Rest Ministries and get visible hope!
Invisbleillness.com – “Each One, Can Reach One” . . . and I’m eager to reach many more.
Shari has had Myasthenia Gravis for 16 years and fibromyalgia for a year. She has had many ups and downs with MG, also known as remissions and relapses. She says, “My last MG relapse caused the fibromyalgia and also depression. I was in the deep dark tunnel called ‘life’ for almost a year before I saw the Light. I am happy to say that by God’s grace I am doing much better because I have decided to center my life around God and NOT my chronic illness.” Visit Shari’s Page at the >Rest Ministries and HopeKeepers Sunroom.
Do you have a story to share? Post something below and we will contact you!
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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:
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Are you interested in having a special blog post you’ve written about living with illness (especially an invisible one?) We’d love to consider it! Please submit it here and we will respond as soon as possible. If it’s accepted we will let you know the date it will appear. And yes, it’s okay if it’s been reprinted before. Just let us know when and where.
There are hundreds of thousands of blogs about living with illness and we’d like these posts to represent all invisible illness. So if you or someone in your family lives with anything from leukemia to sensory processing disorder, panic attacks to multiple sclerosis, depression to Myalgic Encephalomyelitis, alopecia areata to diabetes… we want to hear from you! There is no illness that is too rare.
If your blog is selected, you will also receive an “I was a featured blogger for Invisible Illness Week” button to place on your web site!
If you are looking for blogging topics visit our Bloggers Unite site where you can also sign up to commit to blogging on your own site for Invisible Illness Week and get the badge.
Please consider adding our logo or button or the badge (on the main page) to you site, Twittering about II Week, whatever you can do to help us spread the word. We want this to be an exciting time where people from all over the world with a variety of illnesses come together for support, encouragement and to create awareness about invisible illness.
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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.
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
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.
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.
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.
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.
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!
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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