invisible chronic illness

HAWMC: My Word Cloud

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.

 

Ears
Balance
Vertigo
Disequilibrium
Bobbing
Invisible-chronic-illness
Chronic-illness
Vestibular-disorder
Sunshine
Chaos
Off-balance
Spinning
Loss-of-independence
Loss-of-job
Loss-of-stability
Limbo
Disability
Loneliness
Anger
Grief
Acceptance
Bargaining
Denial
Brain-fog
Stress
Healing
Humour

HAWMC – Make A Keep Calm Poster

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.

HAWMC: My Chronic Illness Time Capsule

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:

Acute

any illness characterized by signs and symptoms of rapid onset and short duration. It may be severe and impair normal functioning.

Chronic

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.

(Image via davidniblack.com)

NHBPM – Let It Be – Asking The Question “Why Me?”

(Image via ashikcusat.blogspot.com)

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

NHBPM – A Song Dedicated To Me And My Illness

(Image by =altergromit via deviantart.com)

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 road Getting 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

NHBPM – Elevator Illness Talk

(Image via astoriedcareer.com)

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

NHBPM – Chronic Pain And Illness Links

(Image via gauchemanitoba.blogspot.com)

This post is another roundup of some articles related to chronic pain and illness that I hope you will find helpful.

First up is a series that devoted to chronic pain called Who will stop the pain – Canada’s invisible epidemic of suffering. A sample of the articles in this series are:

‘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.

And, since I started this post about chronic pain, I’ll end it with this article that states that British scientists have identified a gene responsible for regulating chronic pain.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J