My Illness No Longer Controls Me

By: Carolyn Matheson, Master Certified Coach

Last Saturday a special friend was having a party and I really wanted to be fit enough to attend. To be able to enjoy good food and company and be able to laugh my head off.

I have lost count of the number of times I have said yes to friends and needed to cancel at the last minute. I recognize today that I have very limited energy and I must use it wisely. I rested the week before and was relieved to feel good the day of the party.

I have become very talented at putting concealing make up so I don’t look unwell. That of course has its downsides but on this day it was important for me to just feel ‘normal’. I had a wonderful time and treasured every minute I spent at the party.

As I look back over the last six years I can see that my life has followed the path it has meant to follow. I have a rare neurological condition for which there is no cure. Any medication I take just alleviates symptoms; today I don’t think of having this illness for a lifetime one day they may find a cure. I spend a week in hospital every 12 weeks but I don’t think about that until the day arrives. I do try and take each day as it comes.

It is taking time for me to heal, not just dealing with a physical illness, it is the emotional toll that is taking the time to acknowledge and work through in my own way. I have had to get used to a whole new way of living.

When I got sick I felt all my power had been stripped away from me. There are times when I have felt very lost. Doctors continue to provide me with all the medical care I need. I couldn’t ask for better doctors than I have right now.

What I found I needed was to make huge adjustments to all parts of my life. Has it been hard? Yes of course it has. I have struggled with my headspace; struggled to make changes. I have found it difficult to cope with everyday life.

I have had to make some different choices. They are just different. I am not grateful I got sick but I am now grateful for the different opportunities that have opened up in my life. My illness no longer controls me.
It is true that my illness has stripped me bare of everything I know today. I can now look back and truthfully say I have come through with so much more. I am still Carolyn but my whole approach to life is now different. I have integrated what I have learnt on the way as a coach with the emotional high and lows of a chronic illness.

Carolyn a Master Certified Coach and founder of People Work Best Ltd, has worked for 30 years with executives and their teams across the world. She now combines her extensive coaching experiences with writing about her own insights in how to deal with a long term and very disabling illness. It is her mission to empower one patient at a time to take charge of their health. As well as offering one to one coaching, Carolyn is also a professional speaker. Contact: carolyn@peopleworkbest.com; twitter @capcoach; blog www.carolynsmatheson.com

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THURSDAY’S 9/16 SEMINAR: [1] Invisible Illness [2] Girl Talk

We have an amazing group of people tomorrow morning and we hope you will join us for day #4 of Invisible Illness Week, September 15, at 10:30 – 12 Pacific time; 12:30-2 PM Central time; or 1:30 PM – 3 PM Eastern time – USA time at http://invisibleillnessconference.com . Remember, if you miss it… it’s okay! It will be archived for ages!

First Wayne, founder of the Invisible Disabilities Advocate will be joining us for the first half an hour to talk about the idea of living with an invisible illness or hiddenn disability. And then we’re going to be joined by some women you just may know: Christine Miserandino, otherwise known as the “Spoon” gal from butyoudontlooksick.com ; Jenny Prokpy of chronicabe.com and Kerri Sparling who is the blogger behind the diabetes blog sixuntilme.com . I hope you will tune in!

Wayne Connell is the president of the Invisible Disabilities Association which he founded with his wife Sherri. Wayne’s desire to help others who struggle with disabilities has become a passion for him. He obtained a BA in Television and radio broadcasting in 1990. We will be talking with him about invisible illnesses and also the role he fills as husband and caregiver. Twitter: @InvDisabilities

Jenni Prokopy is founder and editrix of ChronicBabe.com , an online resource for young women with chronic illness. An award-winning writer, speaker, and expert on healthy living, she shares her personal experience – and rallies the expertise of hundreds of others – to help women live beyond their illness and be total Babes.
Her writing has appeared in numerous publications, and she has worked with dozens of organizations large and small, local and multinational, to create compelling messages that empower people to work better, play harder. . .and be their best. Twitter: @chronicbabe

Kerri Sparling is the founder of 6 Until Me, one of the largest patient blogs for those with diabetes. She is married to a “frantically funny, sharp-witted, and brilliant man who is both handsome and caring.” And on April 15th, 2010, her daughter joined the Sparling family. She is also a freelance writer and patient advocate.Twitter: @sixuntilme

Christine Miserandino is a writer, speaker, patient advocate, wife and mother living in Massapequa Park, NY. Christine is the founder of www.butyoudontlooksick.com, a website that provides resources and useful tips for living life to the fullest with a chronic illness. Her writing which has won various awards has been featured in numerous newspapers, magazines, medical newsletters and television media. She has been living with lupus for over 15 years. Twitter: @bydls

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Wednesday’s Workshop Covers Organizing Tips & Parenting When Ill

Wednesday’s program covered 2 topics: “Getting Organized” and “Parenting with Illness.”

Lisa started the show with a bit of a technical glitch but she quickly was able to get her guests through. (And Lisa was dressed today!) Karen Whiting and Marcia Ramsland spoke on organizing and time management. Karen shared one of her best parenting tips, which was to have each child assigned a color and they have everything that is theirs that color, such as a towel, toothbrush, school folders, etc. She said they never passed around the flu in her home, because there was no spread of germs this way. She also shared how helpful it can be to know your “natural energy cycle.” Know what time of day you have more energy of know the seasons that are more difficult for you to get that “spring cleaning” done (it may not be in the Spring at all!)

Marcia Ramsland shared about how the little things can make a huge impact in getting organized, like just doing a “2-minute pickup” when you leave a room or cleaning up a small drawer during the commercials on TV.

Marcia and Karen both have many articles and tips on their web sites, and Marcia also has a free download of a “Time Tracker.”

Next Jill Hart joined Lisa to talk about parenting. Lisa and Jill shared a little about how hard it can be to find the right balance between raising a compassionate kid as well as not wanting them to be the “parent” to an ill parent. Christine Miserandino and Kelly Young joined a few minutes late but Christine shared how the reason was because she’d literally just gotten home from the pediatrician with her daughter who is 3. She spoke about how important it is to have a emergency plan in place for when things like your child becoming ill happens.

Kelly shared about how a child is not like a cake mix (listen to learn more!) and then the women shared a little bit about how they are a mom, someone with an illness, AND a patient advocate online (when do they write and how do they do it all?)

One caller explained how the session had been encouraging as she and her spouse were considering if they should have a child or not. Lisa encouraged her to make the decision from the heart along with her spouse and not to give outside influences too much weight in the choice.

They closed the program with Lisa saying she’d love to have them all back sometime soon for a more in depth time, as they all are an amazing group of women with lots to share.

You can still listen this program any time as it is archived. Either go to www.invisbleillnessconference.com or click in the BlogTalkRadio blue box to the right of this post.

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The Invisible Symptoms of Multiple Sclerosis

Many symptoms of multiple sclerosis are invisible to the casual observer. We aren’t all in wheelchairs or use canes, nor do we all share the same obvious symptoms. We often appear to be the very picture of health.

In many ways, that’s a good thing. Who doesn’t want to look healthy, strong, and vital? In fact, some of us go to great lengths to achieve that healthy look. But the invisible symptoms of M.S. can also cause misunderstanding and lead to emotional stress.

Some of the most common complaints of people with M.S. are fatigue, numbness, and weakness– things that cannot be seen and often cannot be understood by those who have not experienced them at high levels. These seemingly benign symptoms can necessitate missing work, school, or social obligations, causing chores to pile up and misunderstandings to arise.

That’s enough to contend with, but what if your family, friends, and co-workers don’t really believe you? What if they think you are faking, or taking advantage of your diagnosis?

“But you look so good” is the phrase that in most circles is taken as a compliment, but people who live with invisible illness often view it as having a double meaning. We may be inclined to wonder if the real meaning was, “you look fine — there’s obviously nothing wrong with you, so why are you faking it?”

That kind of emotional mind game can take a heavy toll and even leave us to question ourselves. It’s not difficult to fall into that trap. In the long run, we are limited by how much we can change someone else’s thinking, but eventually, we’ve got to make peace with ourselves.

We can do our best to educate those closest to us, to help them understand invisible illness. But at some point we’ve also got to stop evaluating ourselves based on what others choose to believe. Not everyone will get it, and we cannot allow that to affect our own self-worth.

If we put in the effort to look good, perhaps it’s best to accept the compliment and not concern ourselves with any hidden — or not so hidden — meanings. Ultimately, we live with our own truth.

If you love someone who lives with invisible illness, please take the time to learn all you can about their condition and really listen to what they have to say. Appearances can be deceiving, and not always a good indication of health status.

And one more tip — instead of saying, “But you look so good!” try “You look great… but how are you really?” A little compassion goes a long way.

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a multiple sclerosis patient, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. This was originally posted on Care2.com and has been reprinted with the author’s permission.

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WEDNESDAY’S 9/15 SEMINAR: [1] Getting Organized [2] Parenting

Day #3 of Invisible Illness Week is tomorrow, so be sure to listen September 15 at 10:30 – 12 Pacific time; 12:30-2 PM Central time; or 1:30 PM – 3 PM Eastern time – USA time at http://invisibleillnessconference.com .

Here are 2 area many of us with illness struggle with – getting organized and parenting! Today’s first half of the program we will be joined by organizing and time management professionals who have both dealt with illness in their own households, so these are not empty suggestions. They may say, “make your bed” but they also know sometimes the energy is better spend doing something else (like eating).

Second half, we are excited to have Jill Hart from Christian Work at Home Moms, and “RA Warrior” who has 5 children! And Christine, the “Spoonie” Gal who is now a mom will be joining us to share her tips too.

Karen Whiting, a freelance writer and author of ten Secrets of Success for Women: Time. Her more than 400 articles and devotions have been published in over four-dozen magazines including Brio magazine, Focus on the Family, Today’s Christian Women, Reminisce, and Devo-Zine. Twitter: @KarenHWhiting

Marcia Ramsland, entertaining media guest expert, speaker, and professional organizer, is well known as “The Organizing Pro” for her practical tips and clever solutions in homes and offices. She appears non national radio and TV, and her tips in national magazines like Better Homes and Gardens, Woman’s Day, and Real Simple magazines. Marcia is the author of the popular “Simplify for Success” book series, Simplify Your Life, Simplify Your Time, Simplify Your Space, Simplify Your Holidays Ages and Stages of Getting Children Organized and booklet. Marcia has a daughter that got Fibromyalgia at age 17 and knows well what it’s like to have an invisible illness in the home. Twitter: @OrganizingPro

Jill Hart is the founder of Christian Work at Home Moms and the author of co-author of So You Want To Be a Work-At-Home Mom. She graduated from Grace University with a Bachelor’s Degree in Human Development/Family Studies and Bible. Jill has worked from home since 2000 and started her own home-based business to assist other Christians who desire to work from home while maintaining a godly life. Jill and her husband, Allen of CWAHD.com (Christian Work at Home Dads) reside in Nebraska with their two children. Jill also lives with a chronic illness. Twitter: @cwahm

Kelly Young is the mother five of children, two of whom are severely hearing impaired. She has homeschooled for 17 years, led parenting classes, taught many Bible studies and Adult Sunday School classes, and mentored others. Kelly has lived with autoimmune diseases most of her life and has several diagnoses, including RA. She is author of the website Rheumatoid Arthritis Warrior and the moderator of an uplifting Facebook group with about 5,300 members. Kelly encourages others to fight their disease and trust God for help and hope. Kelly lives on Florida’s Space Coast and is an avid fan of Church liturgy, NASA, and NFL football. Twitter: @RAWarrior

Christine Miserandino is a writer, speaker, patient advocate, wife and mother living in Massapequa Park, NY. Christine is the founder of www.butyoudontlooksick.com, a website that provides resources and useful tips for living life to the fullest with a chronic illness. Her writing which has won various awards has been featured in numerous newspapers, magazines, medical newsletters and television media. She has been living with lupus for over 15 years, and has been volunteering for the Lupus Alliance, Long Island/ Queens Affiliate for 12 years. Twitter: @bydls

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Tuesday’s Workshop Panelists Share About Relationships and Chronic Illness

Our seminar today was “Relationships When You Live with a Chronic Illness” and Cheryl Ricker and Pam Farrel joined Lisa Copen to discuss friendship and marriage as they relate to chronic illness. Unfortunately Allison Bottke had an emergency and could not make it.

Lisa opened up by confessing that she was still in her PJs and had not had time to get dressed before the program. (So if you are listening in PJs, you are in good company!)

Cheryl discussed helping a friend with chronic illness and they shared what was done for them that has helped them as they cope with chronic illness. Cheryl shared the story behind her book, Friend in a Storm, of poetry written for a friend going through cancer treatment and how the gift of words is a wonderful gift.

Pam joined Lisa halfway through the program and they discussed the marriage relationship when one person is coping with chronic illness. She explained just what the difference is between men and women and what it is that makes them tick. Lisa asked Pam about the emotions involved when a spouse tells a chronically ill person, “I miss who you used to be…” Pam also shared some other tips from her book The Marriage Code.

You can still listen this program any time as it is archived. Either go to www.invisbleillnessconference.com or click in the BlogTalkRadio blue box to the right of this post.

“I loved the part on marriage and what Pam shared about how to communicate with your spouse when something slips out of your mouth that you should not have said,” shares Kelsey. “Thank you for these wonderful podcasts that I can listen to from my home!”

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If Just One Person… Believes in You

In honor of all of you who have been leaving sticky notes in anonymous little places where someone can find them and be encouraged, we dedicate this song to you.

Thank you for letting someone find a note that let’s them know someone believes in them.

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How Do You Start Becoming a “Well” Ill Person?

By Sue Ingebretson

Embarking on a journey can be both frightening and exciting. When the journey is about health — your own health — you may feel that the frightening far outweighs the exciting.

If you’re someone who’s chronically ill, consider your current status:

• Are you where you want to be?
• Do you feel satisfied with your level of wellness?

Few would answer “yes” to that question. Understanding the health journey process goes a long way toward removing the “frightening factor,” and that’s where the following illustration helps.

When I describe what I call the Rebuilding Wellness concept at speaking engagements, I tell it this way. Think about fixing up a home. Maybe it appears rundown; the eves sag, the paint has peeled, and the once-green lawn has gone beige. Nothing that some operating sprinklers and a new coat of paint can’t fix.

But, if you put some thought into it before the elbow grease, a home that has visible problems might have others, too. It could have problems that aren’t visible, bigger ones beneath the warped siding. What if the roof leaks or the plumbing is bad. Even worse, what if the foundation has cracks – serious cracks. Would slapping on a coat of exterior paint suffice as the ultimate remedy then?

Our health issues are the same way. By the time symptoms appear on the surface, the problems that caused them have already run amok elsewhere. Chronic illness takes time to manifest. It stands to reason that the application of solutions will be no quick fix.

So, where to begin? Consider the type of “cracks” that are affecting your foundation: nutritional deficiencies, extreme stress, toxin exposure (internal and external), infections, injuries, and/or hormonal/thyroid dysfunction. Take a look at what you think affects you most. Begin an action plan to remedy these problems and fortify your “home.”

Tackling these “cracks” one at a time is a big job, but I promise, Rebuilding Wellness is always a worthwhile investment.

Susan Ingebretson is a writer, speaker and the director of program development for the Fibromyalgia Research and Education Center at California State University, Fullerton. Her book, FibroWHYalgia, (2010) details her own journey from illness to wellness. You can read more at her website, Rebuilding Wellness. Ingebretson’s writing has appeared in the National Fibromyalgia Association (NFA) online and print magazine, FibromyalgiaAWARE. Susan is also featured in the NFA’s Public Service Announcement, “The Science Behind Fibromyalgia.”

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Discovering A New Normal

By Keri Delphia

With Invisible Illness Week right around the corner it has had me thinking what my life is like living with an invisible illness. For me it has been trying to say the least.

I, like so many others who I have talked to, was a perfectly healthy, full-of-energy, lots-of-stamina, wife, mother, and business woman– until one day all of that changed.

When I say “one day” it seemed as though one day I was fine the next my whole world was changed. Not only did it change my life, but it changed my whole family’s life. The wife and mother they knew who coudl– and would–do anything they needed, was now too tired, in too much pain, or mentally couldn’t remember small details that were so important to them.

Here we are six years later and I sit here trying to make this make sense with as few words as I can I can say: I have the utmost certainty that God’s Grace, Mercy and Love, has walked our family through this Journey. It has not been easy. Lot’s of doctors’ appointment, lots of disappointment in trying to find answers. And trying to learn a new normal in our lives.

I think the hardest thing for me was admitting there was something wrong with me and listening to my body; Not worrying about what people were thinking about me.

When you look normal on the outside, meaning you show no outward signs of being sick, you know that people have a hard time understanding or having sympathy to your illness. This is something that I know first hand. I was one of those people.

That I know is one of the things that God wanted me to learn through my own illness.

My family has learned a new normal. We all understand that it may have to be adjusted day by day, but communication and honesty about how I feel is a huge key it keeping a peace around our house! No matter what God is with me always and with Him I can do all things! Maybe not the way I used to, but by His grace I find a new way!

Keri Delphia is a very social person who loves to be around people. She began her career as a hairstylist in 1987 and was passionate about it until she was no longer able to do it in 2007. Now she manages a hair salon part time and enjoys sharing her knowledge with the stylists that are just starting their careers. She has been married for 16 years and has two boys 19 and 9! They are a true joy in her life! She also has 12 chickens and 1 Rooster–quite a hoot and she loves the fresh eggs. She lives with Thalamic Pain Syndrome and has been suffering for 5 years now, but it has just been recently that she was diagnosed. Visit her blog, Pain Free Journey for more writings such as this.

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TUESDAY’S 9/14 SEMINAR: Relationships, Friendships, Kids, Parents, Marriage

We’re back for day #2 of Invisible Illness Week, so join us September 14 at 10:30 – 12 Pacific time; 12:30-2 PM Central time; or 1:30 PM – 3 PM Eastern time – USA time at http://invisibleillnessconference.com .

Relationships are one of the biggest struggles we run into when trying to do our best to cope with daily chronic pain–that no one can actually see, and that we cannot “prove.” Join this amazing group of women who talk about marriage, friends, parents and how to set effective boundaries, as well as keep those relationships (especially our marriage) full of joy without getting jaded.

Allison Bottke is the woman behind God Allows U-Turns and now Setting Boundaries. Do you have an adult child who is breaking your heart? An aging parent taking up your whole life? A problem with food? Allison’s resources can help you discover SANITY and take back your life. Between books and support groups around the country, Allison is one who has “been there” and knows it’s hard to set boundaries, but necessary for your own sanity! Twitter @AllisonBottke

Pam Farrel is a relationship specialist, international speaker, and author of over 30 books including best-selling Men are like Waffles, Women are like Spaghetti which she wrote with her husband, Bill. Bill and Pam are frequent guests on radio and television including Focus on the Family, where their interviews with Dr. Dobson were ranked Top 10. She is the founder and President of Seasoned Sisters, a ministry to women 40-65. Twitter: @PamFarrel

Cheryl Ricker is the author of the new book, Friend in the Storm, which is a collection of poems she wrote to a friend who was coping with cancer. She shares about her childhood, “I thought everybody was staring at me through big critical eyes. My self-consciousness affected my confidence which affected my relationships. Insecurity was my gift that kept on giving. So what did I do? I wrote poetry to process the pain of childhood rejection. It was as if some part of my restless brain knew the power of poetry to reach the broken places.” Twitter: @CherylRicker

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