Today is the last day for April’s HAWMC prompts and our challenge was to make a word cloud using the website Wordle. I chose to do my word cloud using words to describe how my vestibular disorder affects me physically and mentally as well as a few of the things I have lost.
It was great the way it turned out. If you click on the image so that it opens in a new window and you look at it for a few moments, hopefully you get a bit of the 3-D effect I saw. That effect represents the very off-balance way of life for me now as does the layout of the words, which Wordle calls “any which way”. Some days, depending on how my ears are behaving, any which way is exactly how I feel I could end up if I move around too much.
Here’s a list of the words I used. They include what has happened to me, the 5 stages of grief that I and many people with chronic illnesses go through, how I feel some days and some hope with the words healing and humour.
Today’s prompt has us making a “Keep Calm and Carry On” poster that relates to our chronic illness. I chose “Keep Calm and Keep Living” because, quite simply, that is what we must do. Having a chronic illness changes so many parts of our lives but we must keep living the best way we can! You may not win the battle with your chronic illness but don’t give up and don’t let your illness defeat you.
Welcome to the first prompt of the Health Activist Writer’s Month Challenge by WEGO Health for April 2012. Today’s prompt asks what would we put in a time capsule, to be opened in 2112, that focuses on me and my health and what might people think of the contents.
First, a bit about me. I have an inner ear disorder that is an invisible chronic illness. It’s called invisible because you can’t see what the physical disability is that I have by looking at me. Most of the time I appear “normal”, unless my ear monster is acting up, then you may see me walking and think that I’ve had a drink or few. And chronic illness is different from an acute illness. These are the definitions of acute and chronic illness from The Medical Dictionary:
any disorder that persists over a long period and affects physical, emotional, intellectual, vocational, social, or spiritual functioning.
The Ear, Nose and Throat doctor could not give me a specific diagnosis but was able to confirm that something was wrong with me physically. Ask people who have an invisible chronic illness and there’s a decent chance that someone they have seen in the medical profession decided that the illness is psychologically-based.
I have issues with disequilibrium, a feeling of being off-balance. I very rarely get close to a vertigo attack but I owe that to the fact that I will, for example, sit at my computer and read the newspaper, catch up on emails and visit various sites while I have my breakfast. When I’m done, I lie down so that I give my ears a rest. Not my arms, legs or other body parts but my ears. And I have to do this throughout the day. If I don’t, the disequilibrium gets worse and worse to the point that I lose my balance and start to fall to the side. Because of this, I can’t work so I’m on disability because of my ears.
When I first became sick, I used the analogy of being on a boat and bobbing along the water as a way to describe how it felt inside my head. I chose some pictures and videos for my time capsule and a short description on how they show what it is I’m feeling in my head as I go through my day.
I’m not going to try and guess what the people of the year 2112 may think of the contents of my time capsule. What I hope to accomplish with the pictures and videos is to help bring some understanding and awareness to how I and others feel on a daily basis.
I looked at this wonderful picture and immediately saw my ear monster in the wave on the right. He’s checking out what’s happening, his hands on the wall ready to propel him into action. Each day offers a new way to shake things up for me. Each day, I am affected.
(Image via thinking-stoneman.blogspot.ca)
I chose these videos because I think this best represents how it feels inside my head. Imagine you’re on a boat, no oars to help paddle. No way to gain control of the boat to get to the firmness and stability of the shore. You are at the mercy of the waves. Some days I feel like I’m in a small boat with lots of motion, other days I feel like I’m in a larger boat but with less motion. I still feel movement, but the size of the boat helps determine how much motion I feel.
On my good days, I will feel small ripples. There’s not too much motion, but enough to let me know the monster is always there.
(Image via physics.uoguelph.ca)
Some days I have no control over my ears. A cold, allergies, using too many of my spoons (read The Spoon Theory if you don’t know what I mean) or changes in the weather produces a constant motion in my head, even before I get out of bed.
(Image via free-extras.com)
Sometimes I’m sitting still, reading or watching tv and I am not physically moving, but inside my head it feels like a wave has slammed into me, shoving me from my spot and I’m falling over. But again, I’m sitting still.
(Image via en.wikipedia.org)
On good days, I feel a bit of movement in my head, but not that much and I’m able to be a little bit active. Go for a walk, get a few groceries, the things I used to take for granted before I got sick.
(Image via missrosen.wordpress.com)
This is Mirror Lake in China. I chose this picture because for a short time each day, the water seems almost still. On rare days, I get very lucky. All is calm with my world. I never know when those days will happen. I take them when I can and enjoy them.
(Image via travelblog.org)
However, we know that no matter how calm things appear on the surface, there is always movement underneath. And some days, it is overwhelming and I spend a lot of the day in bed.
(Image via mysuburbannews.com.au)
Each day, as I’m waking up, I feel like the person in the picture below, looking, searching for clues as to how my day will be and how my ears and the ear monster will be treating me that day.
Today’s prompt we get to let it be. Whatever may be bothering us, let it go. Talk out the letting go process and how you’re going to be better to yourself for it.
One of the benefits of having a blog is, when you need to let it out and talk it through, you write it out and click on publish. There is nothing going on now that I have to work through, so I went looking through earlier posts to see what I could find that would suit today’s prompt. Not surprisingly, as a person with an invisible chronic illness, I found one.
The post I chose is The ABCs of Disability – The Letter W. The “W” is for the word “Why”, as in “Why Me”. I wrote about it because I believe it is a legitimate question to ask not only ourselves but the professionals looking after us.
And I couldn’t help it, if you would like some music to listen to while you read the post, Let It Be by The Beatles.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
Today’s prompt asks us to dedicate a song to our condition. The song I have chosen is the Russell Watson’s version of Faith of the Heart. I would listen to the song and read the lyrics long before I received a diagnosis. I even played it on the day I received my diagnosis and it still describes how I feel about my journey through the years – the faith and strength that someone needs when living with an invisible chronic illness.
While I feel the whole song describes me and how I feel, there are two parts of the song that I relate to the most. The first two lines - It’s been a long roadGetting from there to here – because it has been a very long road. It took over 5 years before I had a diagnosis.
The second part is:
It’s been a long night Trying to find my way Been through the darkness Now I’ve finally had my day
As anyone with an invisible chronic illness can tell you, many times we have not been believed because others could not see us displaying any symptoms. People think it’s not that bad, we’re not in that much pain, not that tired or we want to get out of doing things. The list is long and varied. It really can be dark times while we are waiting and having countless tests and procedures done. To finally have a diagnosis confirms that we aren’t faking it. Armed with the knowledge of what illness we have, getting a diagnosis also shines a light on the new road we are on and the different ways we will be living our lives.
Here’s my song, I hope you enjoy it and find your own faith and strength from the words.
Faith Of The Heart
It’s been a long road
Getting from there to here
It’s been a long time
But my time is finally near
And I can feel the change in the wind right now
Nothing’s in my way
And they’re not gonna hold me down no more
No they’re not gonna hold me down
‘Cause I’ve got faith of the heart
I’m going where my heart will take me
I’ve got faith to believe
I can do anything
I’ve got strength of the soul
And no one’s gonna bend or break me
I can reach any star
I’ve got faith, I’ve got faith, faith of the heart
It’s been a long night
Trying to find my way
Been through the darkness
Now I’ve finally had my day
And I will see my dream come alive at last
I will touch the sky
And they’re not gonna hold me down no more
No they’re not gonna change my mind
‘Cause I’ve got faith of the heart
I’m going where my heart will take me
I’ve got faith to believe
I can do anything
I’ve got strength of the soul
And no one’s gonna bend or break me
I can reach any star
I’ve got faith, I’ve got faith, faith of the heart
I know that we’re so cold
We’ve seen the darkest days
But now the winds I feel
Are only winds of change
I’ve been through the fire
I’ve been through the rain
But I’ll be flying, oh yeah
‘Cause I’ve got faith of the heart
I’m going where my heart will take me
I’ve got faith to believe
I can do anything
I’ve got strength of the soul
And no one’s gonna bend or break me
I can reach any star
I’ve got faith, I’ve got faith, faith of the heart
It’s been a long road
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
Today’s prompt asks us to describe our blog to someone while riding in an elevator and we have to make a version for a 30 second, 1 minute and 2 minute ride. And, time-saving hint: the paragraphs for the first two rides are repeated in the 2 minute ride so skip to the last ride to avoid reading the same thing.
30 second ride
My blog is called sunshine and chaos. I started my blog because I have balance issues related to my ears. The doctors can’t really help me at this point. So I went to the web to find others like me with ear problems and people dealing with chronic illnesses. There’s nothing like being able to talk to someone who understands the challenges someone with a chronic illness faces. I also post different things that amuse me that aren’t related to chronic illness because we all need a break and some balance (pun intended) from what we deal with on a daily basis.
1 minute ride
My blog is called sunshine and chaos. I started my blog because I have balance issues related to my ears. The doctors can’t really help me at this point. So I went to the web to find others like me with ear problems and people dealing with chronic illnesses. There’s nothing like being able to talk to someone who understands the challenges someone with a chronic illness faces. I also post different things that amuse me that aren’t related to chronic illness because we all need a break and some balance (pun intended) from what we deal with on a daily basis.
I have found that there is a wonderful group of people online who have gone or are going through the same issues and experiences that I’m going through. I hoped to learn, and do learn, how to deal with this chronic illness that is also known as an invisible chronic illness. That is sometimes the worst part of living with an invisible chronic illness. Life doesn’t stop and we have to keep moving forward and getting things done. Unless someone sees me lose my balance or can somehow feel what it’s like to have periods of disequilibrium, they don’t understand what it’s like. I’m happy they don’t, but it’s hard because people need proof. And for me to prove it, I have to keep pushing myself by doing more than I can or should and then reach a point where I would injure myself because I lost my balance and fell.
2 minute ride
My blog is called sunshine and chaos. I started my blog because I have balance issues related to my ears. The doctors can’t really help me at this point. So I went to the web to find others like me with ear problems and people dealing with chronic illnesses. There’s nothing like being able to talk to someone who understands the challenges someone with a chronic illness faces. I also post different things that amuse me that aren’t related to chronic illness because we all need a break and some balance (pun intended) from what we deal with on a daily basis.
I have found that there is a wonderful group of people online who have gone or are going through the same issues and experiences that I’m going through. I hoped to learn, and do learn, how to deal with this chronic illness that is also known as an invisible chronic illness. That is sometimes the worst part of living with an invisible chronic illness. Life doesn’t stop and we have to keep moving forward and getting things done. Unless someone sees me lose my balance or can somehow feel what it’s like to have periods of disequilibrium, they don’t understand what it’s like. I’m happy they don’t, but it’s hard because people need proof. And for me to prove it, I have to keep pushing myself by doing more than I can or should and then reach a point where I would injure myself because I lost my balance and fell.
I started my blog since late 2010 and have blogged about the emotional roller coaster ride that happens while dealing with an invisible chronic illness. The losses far outweigh any gains. But, that’s not to say that nothing positive happens. I have fun blogging. I do different posts that people like. My Sunday Quotes always do well as do the Food Porn Friday posts. Sometimes I’ll do a quick post if I see something that I think others might be interested in. You never know what you will find. But the best part? The people I have “met”. They have shown to be caring, brave, generous and a wonderful example of how to deal with having an illness – on good days and bad. I truly don’t know what I would have done without them and their wisdom.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
‘I live this life in pain’: Canadians with chronic pain struggling to find help, hope,
Sometimes, when the pain drugs don’t reach her, Lous Heshusius lies on the floor as still as a corpse. “Please,” she’ll whisper to herself, “Please, let it pass.”
The burden of no proof
Because there is no objective way to measure chronic pain, people who suffer from it often struggle to convince others that their pain is real.
Salvation or slippery slope?
Fears about addiction, abuse keep pain sufferers from effective drugs.
This may not come as a complete surprise to you but The Institute of Disability at the University of New Hampshire has found that “Compared to racial and ethnic minority groups, people with disabilities are generally more likely to experience poorer health…”. The report called Health Disparities Chart Book on Disability and Racial and Ethnic Status in the United States.
The basic purpose of this chart book is to answer the question of whether working age (18-64) people with disabilities in the United States experience health disparities similar to those experienced by members of racial and ethnic minority groups in the United States.
This article from the Invisible Disabilities Association called Just Take Something helps explain how, no, we’re not faking it, being lazy or not following doctors orders. And if we are able to take something for our illness, we sometimes have to jump through hoops trying different medications, tests, surgeries and procedures to help in our day-to-day living.
Do your managers know the FMLA ‘contact’ rule? is an article about a court ruling that says not returning a call a court ruling says it might qualify as evidence of FMLA retaliation. A registered nurse on medical leave regularly kept in contact with her manager. Her manager however, failed to return many of her calls. The nurse, was fired for shortly before she was scheduled to return to work. She filed suit, and won, claiming the hospital retaliated against her for taking leave.
For today’s NHBPM post, the topic is “List 5 things that changed your life as a patient, caregiver, or Health Activist for better or for worse and how.” Instead of a patient, I chose to talk about my life as a person living with a chronic illness. Here is my life changing list.
developing a chronic illness
losing my job and a lot of my independence
realizing that so little is known about my illness and there is little research
getting on disability
starting a blog
Obviously, having a chronic illness that will not go away has changed my life for the worse. I can tell you the specific date and even the time of day that my life started to change. Different events that happen in my life now have the “before” or “after I got sick” qualifier. The doctors don’t know specifically what I have other than it’s some sort of vestibular disorder. They don’t know the cause. They have no definitive diagnosis therefore there is no cure or treatment that enables me to go back and be independent. The only advice my ENT doctor could offer me, after telling me that ear-related balance issues is more common than what people realize, is to find a quality of life and wish me luck.
I was able to get on disability the second time I applied, but I would rather be employed, contributing to society and living independently. When I was able to get the internet, I started looking for as much information as I could. It has been very disheartening to find that there really isn’t that much. The worst part of all of this is that there is very little research into vestibular problems. Little research means little can be done to help me and others like me.
What has made this experience much more tolerable (for me better is not quite the right word) is that I started this blog. I’m very lucky in that I live with a few people who are living with their own chronic illness and we can share and vent about what is happening in our lives. But, they don’t have the same illness or the same physical problems that I do.
It’s the people who I have “met” online who are dealing with chronic illnesses that mean a great deal to me because we have all turned to the internet to search for information and we have found each other. Blogging is so important because, as many people with chronic illness can tell you, there are friends in their real lives who have drifted away because our illnesses have changed us and how we live. It’s not fair, but it’s something that happens to many of us. Even though we may not have the same illness or illnesses (some people have more than one chronic illness), we understand and are there for each other with help, support and friendship.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
Today’s NHBPM post is a letter to my 18 year old self.
Hi Me,
I’m writing this letter so that you can better prepare for what may happen to you later in life. I know as an 18 year old you may not understand everything I will tell you, and that’s OK. I am being vague in some cases because I don’t want you to live in fear as to what may happen. Because it happened to me doesn’t mean it will happen to you. What I do want, is to help you make better choices.
I know what you’re thinking right now. You planned to take a year off and work, save money and go back to school. If it’s not happening now, you will soon want to move out on your own. I loved it but I didn’t go back to school. Allow me to offer an alternative plan.
I realized that I can listen to people and hone in on the problem and I enjoy being able to do that. My suggestion is to go to university in another city so that you can live away from home and take psychology or you may find something completely different that you like. I think you will be happy doing it that way. You can live away from home and you’re still going to school. You will have so many more doors open for you and I’m sure you will also grow into a more well-rounded person much earlier than what it took me.
You also have to understand that mom and dad, while having your best interests at heart, will say and do things that are based on their personal fears. Don’t let this affect you and your fears. They only knew what they have been taught by their parents. Also know that mom will be battling depression. The phrase, “Mom being mom” will be used to describe how she behaves. But remember, it will be due to depression, her thinking back on lost opportunities and opportunities that women of her day didn’t do. Also remember, mental illness wasn’t really talked about when I was your age. It’s being talked about more openly now but is still viewed with fear by many people.
Also, open yourself up to opportunities and be more social. Meet a variety of people. I really enjoy knowing where people are from and listening to their stories. I was such a homebody. Learn different arts and crafts. Take continuing education courses. You like variety. You may not stick with one thing but you will have fun learning.
Make sure you stay in shape. Exercise and eat healthy meals. DON’T do fad diets. This will help you so much later on you can’t even begin to realize it.
The reason I tell you these things is that you may be hit with a chronic illness. Remember how mom had Meniere’s? I have ended up with a vestibular disorder as well but the doctors don’t know what I have exactly so they are unable to offer much in the way of treatment. I’m not able to work any more and having balance issues and mobility issues are affecting other areas of my health such as muscle strength and endurance. I am worrying about heart disease at a younger age than what I should. That is why I’m tell you to get and stay in shape NOW.
I will tell you that the trigger is a really bad flu. The virus itself was bad and many people were sick. At one point, close to 1/4 of the people I worked with were home sick with this flu. I suspect the vestibular disorder may be genetic (two immediate family members having a similar disorder?). I have been told by different doctors that it is a co-incidence but I don’t believe them. Doctors are very hesitant to say genetics play a part. There is very little in the way of help and research of inner ear disorders so there are huge stumbling blocks for all involved.
Again, I don’t want to say too much about MY illness and don’t want to scare you. I believe in my heart that MY illness may not become YOUR illness if you take care of yourself and stay healthy. You will feel better and probably get less colds and flues. What I do want is for you to take more chances, love more freely, be healthy, go to school, make friends with a wild variety of people and have confidence in yourself. It’s been there all along. Just open yourself up to new possibilities.
In closing, I want you to remember that you have a kind heart and a good soul. Don’t let others tell you any different. There are many people who are ruled by fear, ignorance and misunderstanding. But you do need to prepare for a possible health crisis. I truly, truly believe that if I was healthier I may not be having the problems I’m having now.
I wish for you a lifetime of wonderful adventures and opportunities.
Love,
Me
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
I did it! I signed up with WEGO Health and am doing their National Health Blog Post Month (NHBPM). Other than WordPress’s postaweek challenge this year, I have not done anything like this. Especially something where you have to post each day. But, there’s no time like the present, is there?
What is NHBPM? This is from WEGO Health blog:
As you may know, November is National Blog Posting Month or NaBloPoMo. It’s a month dedicated to the art of blogging, taking it to a new, challenging level by pushing all participants to blog every single day of the month. Sounds familiar doesn’t it?
In light of NaBloPoMo (and the success of our own awesome HAWMC event this part April) we are doing our own Health Blogger NaBloPoMo – a full month of health blogging! And we’ve got a bunch of great prompts catered specifically to online health leaders, bloggers, and anyone who wants to try their hand at blogging about health.
With this first post of November, the prompt is Titles of my future book. We have become such prolific writers after writing all those posts that we are now writing a book. We have to come up with 5 working titles and a quick book jacket synopsis. Because health is the “H” of NHBPM and having an invisible chronic illness has been so life changing for me, the titles are related to my health issues.
Living in Limbo – Living With an Invisible Chronic Illness
Join our off-balance author as she learns what it’s like to live with a diagnosis of an unspecified inner ear disorder. She is unable to work but, because the doctors don’t know specifically what the problems is, there is little in the way of help from the medical community.
What Do You Mean “Try and Find a Quality of Life”?
There are so many quaint terms and phrases that some of your favourite (and not so favourite) medical, legal and insurance people use when they are talking about YOU! Your off-balance author will walk you through the mine field of jargon that is now a part of you life.
Why Is Finding A Cure Taking So Long?
Your off-balance author talks to different health care professionals about some of the research that is and isn’t being done and some reasons why many chronic illnesses have no cure.
Thanks For Making an Assumption (YOU ASS!) But No, I’m Not Drunk! – And Why It’s Too Bad You Can’t Blame The Dizziness On Being Tipsy
Yes, having an invisible chronic illness sucks! Yes, people are nosy. Yes, people make assumptions. No, some of them haven’t learned that assuming makes asses of them! And, bless them, they keep on assuming. Which means that they help provide some of the humour in your day-to-day life. (Yes, there’s still some there.) Join our off-balance author as she weaves and bobs while trying to explain just how much more fun this inner ear disorder-thingy would be if it could be blamed on being tipsy. Cheers!
Do You Know Someone With An Invisible Chronic Illness?
Of course you do, writes the off-balance author. You may even be one of them. Join her as she talks about some invisible chronic illness statistics. Two that are discussed in the book: Did you know that almost 50 percent of Americans have a chronic condition? Or that 96 percent of them live with an invisible chronic illness? And that many of them look healthy and normal? Now that daily performance deserves an Academy Award!
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
(Image via ashikcusat.blogspot.com)
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(Image via astoriedcareer.com)
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