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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What else can you see?
Because you can’t see past it.
I should probably not complain that I’m living with an invisible illness. As much as I hate it, I also help perpetuate the term invisible. I don’t usually let people see past the smile because they’ll see the real me and I hate appearing weak. I also don’t want them to see what I deal with. It’s a double edged sword. It’s an invisible illness because you can look absolutely perfect while hiding a great deal of pain and it’s also invisible because we don’t want people to judge us. We get enough of that from doctors, we are afraid we’ll also get it from everyone else.
What you don’t see is the pain that starts the minute I open my eyes. I know what is going to happen the minute I put my feet on the ground. It’s a pain that makes me want to revert to crawling instead of walking. I limp toward the kitchen to make my coffee or tea, whatever my mood is that morning. Mornings are usually pain-filled so I can tell you the mood isn’t real perky. This pain continues throughout the day in varying degrees. The nights are the worst. I spend a lot of time in the bath. After that it’s in bed.
This all started after a nasty car accident in 2008. I was at a full stop and a truck hit me going approximately 25-30 miles an hour. Now, I’m not the type to whine so I was more annoyed than anything else. When the man came up to me and asked me if I was okay, I said I didn’t know. That was the truth. As I sat there it felt like an electric current was running through my body. I shrugged it off because I had things to do. I went through the rest of the year wondering what was happening to me? My back hurt, my body hurt and my memory was fading. Finally, after a year I finally had to stop working at my usual frantic pace and find out what damage was done. I never realized it would be life changing.
One of the biggest adjustments I had to make, and I’m still making, is knowing my limitations. I’ve said it before and I’ll say it again. I’ve never liked limitations. It doesn’t matter if it’s mental challenges, food or speed limits. You notice that physical limitations was not on that list. Nope, it wouldn’t be. I’ve always gone at mach one with my hair on fire and having to learn the cardinal rule of chronic illness has been difficult for me. If you push you will pay. When I have a good day, which isn’t often, I tend to make the most of it. I know, not good. You’d think I’d be getting the hang of it by now, but I haven’t. I still hate what my body has done to me.
I found my voice in blogging which is weird because I’m not real open with people. I’ve always been outgoing but very few ever got to see the “real” me. I am friendly, approachable and empathetic but not in reverse. Then I started to blog and was able to communicate on a truly different and surprising level. It wasn’t scary to have people be able to see into my soul and that has helped me open up in so many areas of my life. I tend to isolate myself because of the pain and with that isolation I’ve left many friends and family by the wayside. I’ve been able to communicate about the pain and depression. Again many things surprise me. I’ve also learned about people that suck the life out of your soul and cut them out. I have too many other things to deal with so they just had to go!
The other adjustment I’ve had to make is in the area of control. I’ve always like to control the environment around me. That’s a huge part of my personality. I’ve always felt that if I can control things then I won’t get any nasty surprises. Well, I didn’t say that it worked I just said I liked to operate that way! I’ve had to accept that I won’t know what I’m dealing with regarding my body on a day to day basis. That means I can plan but plans may change. I’ve had to let go and that isn’t easy for me. So many things haven’t been easy and I’ve had a hard time dealing with that. Fibromyalgia, and any chronic illness for that matter, wreaks havoc. I don’t care whether it’s physical, emotional or financial. It trips a domino in your life that starts with chaos and mayhem in your physical body and continues on until it messes you up emotionally. Then it loves to cause real damage when your financial life you had goes out the window. I know it’s something I have to learn to accept but it’s that darn little word called control. I don’t have it and it makes me crazy.
So it’s 3 a.m. and it’s another night of robbed sleep. I will try to close my eyes but I don’t have high hopes. I’ve taken the muscle relaxers and pain medication but my muscles are still not paying attention to the fact that they’re supposed to calm down. I’ll end this post and turn off the lights and hope beyond hope for a few hours of sleep.
Rosemary Lee lives with fibromyalgia and she tries to find humor in everyday life. Sometimes it works and sometimes it doesn’t. She says, “I am an analytical dreamer. Oxymoron? I think not.” Visit her blog, Seeking Equilibrium.
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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: firstname.lastname@example.org; twitter @capcoach; blog www.carolynsmatheson.com
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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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Thank you for letting someone find a note that let’s them know someone believes in them.
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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.”
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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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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This may seem like a non sequitur, but I think people who can sing are really cool. My best friend is a singer, and when she cuts loose the sound is so beautiful it sometimes brings tears to my eyes-not just because she hits the right notes, but because she seems so natural, so comfortable, so confident.
When I think of the people who inspire me most, most are singers: Björk, Natalie Maines, Madonna, India Irie, Lady Gaga, Natasha Bedingfield… I could go on and on. It’s not just the gorgeousness of their voices or their awesome vocal technique; often, it’s about their message, and how I feel it through the music. They’re so, well, free. And powerful!
So I decided to take a singing class. I talked about it for a while, and I procrastinated because I’m nervous about performing in front of people. I kept singing in the shower, listening with a way-too-critical ear. Then one night, two people I’m quite close to surrounded me, shoved a class schedule from a local school in my hand, and basically forced me to sign up. That’s my story, anyway.
The first class was the other night, and I was really nervous. Turns out, some other students were WAY more nervous than I. Watching each person perform a few notes was fascinating; some people were clearly freaked out and giggled nervously, but others sang with confidence and ease. One woman sang when she wasn’t supposed to, and her voice was beautiful; she got embarrassed about missing her cue, but I thought she was fantastic.
Which brings me (in a roundabout way, I know) to you, Babes. We sick folk often lose our voices. We get shy, afraid to sing out in a crowd and let our opinion be heard. We get embarrassed, feeling like people hear us complain all the time…so why should we keep making noise? We feel something deep within but we get bogged down in how we think other people view us, and we’re afraid to speak up. We’re afraid to sing.
But just like that woman in class the other night-the one who sang out of step with the group but sounded marvelous-we have to get over our fear of staying in line with everyone else and learn to just BELT IT OUT! What we have to say is meaningful, valuable and beautiful. And while we may feel rusty at first, I know that with a little practice we can sing a tune that moves others to action.
Maybe you just use your voice on your own behalf, make a plea for help that is finally heard because you articulate your needs (symptoms? frustrations?) clearly and authoritatively. Maybe your voice soars over the crowd, reaching hundreds or thousands through a blog in which you tell your story and show others how to be strong.
Maybe your voice inspires your family and friends to learn more about your illness, or advocate for you or others. Maybe your voice will be so beautiful and strong that you reach another ChronicBabe who feels alone, who needs to be inspired to find her inner strength so she can start to feel better. Maybe you can change her life.
Once you start singing, who knows what could happen? I used to be afraid to speak up and use my voice to advocate for my own needs; the idea of speaking out on behalf of others, in the face of disbelievers or critics, seemed crazy. And look where I wound up, Babes?! On TV, in newspapers and magazines, on the radio and here on the internets, raising a ruckus on behalf of ChronicBabes everywhere. You can do it, too! Even if it’s just for your own sake, sing out. Make your presence known. I can’t wait to hear your voices!
Until then, I’ll keep singing in the shower. And in the classroom. And walking down the sidewalk. And to anyone who will listen.
Jenni Prokopy is founder and 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.
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Vicki Sodora of Palm Beach Gardens, FL shares the video with us below.
“Having an illness that effects every aspect of your life, relationships and how you view the world has been an eye-opening experience for me personally. After meeting with other people who went through similar trials, my heart broke. I know that some people just need to be HEARD. (REALLY HEARD!) I created this video – as an affirmation and an encouragement for others. I know that through trials, God has a plan to use them for good and that is hope to hold onto – through the pain. ”
(By clicking on the video it will take you to the location on YouTube whre the video resides so you can listen.)
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By Ann Pietrangelo
Last week’s post [at Care2] about an able-bodied woman using a handicapped parking space, then suing over the ticket she received, resulted in spirited conversation in the comments section.
It’s an emotional topic for a lot of people, not the least of whom are those who have the legal right to use the specially marked spaces, but who have an invisible disability. Judgments are often made based on nothing more than appearance.
When a person with an invisible disability pulls into a handicapped parking space, even with the appropriate legal tags, they are apt to get stares, glares, and outright anger.
We can try to educate others to understand invisible illness, should the inspiration strike, but we should never apologize for needing or using a handicapped parking placard. We owe no explanations. It stings, but not everyone will get it or care. Such is life.
If you’ve ever observed a seemingly healthy person pull into a handicapped parking space and felt anger toward them, you might want to consider there might be more to the story… and thank your lucky stars for your good fortune.
It could be a heart condition, a neurological condition, or any of a long list of chronic illnesses that affect mobility. Appearances can be mighty deceiving. Not all disabilities require a wheelchair.
Rather than give up and lock themselves away, these folks choose to go out into the world. Bravo! The little extra help from a more convenient parking space makes that less daunting.
While you observe them walk from the parking space, you are not privy to the advance planning that allowed them to get this far on this day. You don’t see added burden when they find that a business has stairs, but no elevator; or a door too heavy to pull; or the long line at the register that will severely test their strength and stamina.
If you don’t need special parking, please don’t resent or judge those who do. It is called a privilege, but no one really wishes for health problems in order to get this privilege. No, people who need it would rather not. Trust me on that.
Daily life is can be a hassle, and wouldn’t it be great if we could all just pull up in the first spot in the lot and get to our business?
That we have the ability to walk and take care of our own errands… that we can climb the stairs and pull the door open and even hold it for the next person… that we do not need the handicapped parking spot… that is the true privilege.
I have relapsing/remitting multiple sclerosis, and with that comes constant change. Sometimes I can’t walk more than a few feet at a time, sometimes not at all; much of the time I can walk, and it is a glorious privilege, one I shall not squander or take for granted.
If you can walk without too much difficulty, if you do not require a handicapped parking placard, you are fortunate indeed.
Savor the privilege of walking.
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. Follow Ann on and has been reprinted with the author’s permission. Follow Ann on Twitter @AnnPietrangelo
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