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.
The world’s first bedside DNA test tells doctors about a patient’s genes in minutes instead of waiting days for blood test results. This particular test, which British medical journal The Lancet has signaled as a first, looks for a version of a gene that complicates treatment of some patients who have stent surgery because of a drug that is used, Plavix.
A vaccine that stimulates the body’s immune system to produce the antibodies that prevents heart disease by cutting up to 70% of fat from arteries is being tested at Lund University in Sweden. The vaccine would be administered either through injection or nasal spray and could be available in 5 years.
An appeal on Facebook for a bald Barbie to help young girls dealing with the loss of their hair, or the loss of hair of a loved one due to illness, was heard by Mattel. They will be introducing someone new, a friend of Barbie who is also bald. Barbie’s friend will come with various head covering such as wigs and scarves. The new dolls will be sent directly to hospitals for donation and distribution in 2013.
Wearing a pink tutu was Bob Carey’s way of expressing himself when he and his wife Linda moved to the east coast. He felt his life was taking, in a wonderful way, a 180 degree turn from what he knew. Life really did make a 180 degree turn when Linda was diagnosed with breast cancer in 2003 and again in 2006. From The Tutu Project web site:
Oddly enough, her cancer has taught us that life is good, dealing with it can be hard, and sometimes the very best thing—no, the only thing—we can do to face another day is to laugh at ourselves, and share a laugh with others.
The self-portraits of Bob wearing his pink tutu, and some humourous stories, will become a book to be published this fall called Ballerina, with net proceeds going directly to breast cancer organizations.
How Xeni Jardin’s Cancer Struggle Redefines Community and Journalismis a Forbes article that talks about Boing Boing’s editor, Xeni Jardin, who is undergoing treatment for breast cancer. She decided to get a mammogram because of the experience of a friend and tweet throughout her own mammogram procedure where she, and we, learned that she had breast cancer. Xeni has continued to tweet about her experiences and is currently undergoing chemotherapy.
Those of us living with chronic illness have been judged by people we know and by strangers, based on how sick we look and what activities we are able to do or not do. We have to learn to not let their judgements about us affect us and how we live. I know the post isn’t about chronic illness specifically, but I believe it can help those of us who live with chronic illnesses to deal with being judged. Julien Smith of In Over Your Head has written The Complete Guide to Not Giving a F***! (NSFW language).
All of us are affected by mental illness. All of us. Either we are the ones with a mental illness or we know someone who has a mental illness. And, even though it is being talked more openly, there is still a stigma. Mary Walker Baron talks about the stigma of mental illness and how talking about mental illness should be as normal as talking about a cold.
Today I am using one of the bonus prompts, which is “describe my best doctor’s visit”.
This won’t come as a surprise to those who are living with chronic illness, but the day I FINALLY received a diagnosis was, and still is, the best doctor’s visit ever. It took over five years before I had a diagnosis.
It was a beautiful fall day. Sunny, warm and the summer’s humidity was long gone. It was so comfortable to be outside. The ENT’s office is only about 5 blocks away and I took a cab to my appointment. Even though the office is close to me, I didn’t want to take a chance on missing the appointment. I can walk very short distances, but some days, walking two blocks is pushing things.
The doctor explained that my health issues involved my ears. So many things that couldn’t be explained by the other specialists started falling into place. So many things started making sense. I became my own chronic illness detective by connecting the dots and solving some of my health mysteries.
In the way that having a cold leads to not feeling well and then getting cranky, I could make sense of some of the various symptoms of my, until then, mystery illness. A lead to B lead to C. Ears giving me problems, adrenaline goes up, feel very warm even though I didn’t have a temperature. Sudden changes in weather, ear problems amplified, walking two blocks becomes a marathon.
When I walked home from the appointment that day (yes, I said walked home because I was that happy to have a diagnosis), I felt like I was floating on air. I was elated! I was euphoric! I smiled from ear-to-ear! I finally had an answer! And that’s what anyone with an unknown chronic illness wants – answers.
We all deal with various battles where our chronic illnesses are concerned and so many times we are being reactive instead of proactive. At least, that’s how I felt and still feel most days. Although the doctor couldn’t tell me the specific diagnosis and reason why my ears were giving me problems (he said it is common with vestibular problems to not know the cause), I had a diagnosis from a specialist that, yes, something is physically wrong with me. It wasn’t psychological – “in my head” – the overused diagnosis doctors give when they don’t know what is happening with you and you don’t present with symptoms that can easily lead to a diagnosis. This, wrongly, continues to happen to so many of us.
In the end, ironically, my best doctor’s visit ever confirmed that yes, not only is something physically wrong with me, (and since the ears are in the head) it really is all in my head.
Today’s prompt asks us to create a Pinterest board for our health focus and to pin three things. As my illness affects me differently each day, so does what I think about. This is what I’m thinking about right now.
(Image by Martin Kucera via floridalightning.com)
This image by Martin Kucera at http://www.floridalightning.com reminds me what I am like with brain fog. I can only see what is close to me and, even then, fog has enveloped it. I quickly lose interest in things because it’s hard to think and concentrate.
Even though our chronic illnesses can take over our lives, we must keep living. There will be some bad days and some really bad days. But, we must be aware of, enjoy and appreciate the good things that happen to us and around us, no matter how big or small.
Keep learning!!! This year I am going to learn how to do a few different things to keep the hands and mind active. So far I’ve tried haiku and loom knitting. That’s supposed to be a preemie hat. Don’t judge, it was my first attempt. Last week I received my supplies to do jewelry making with resin clay (a.k.a. apoxie clay) and I will get back to drawing.
My computer, laptop and internet. As so many people with chronic illnesses already know, one person’s luxuries are another person’s necessities. Computers and the internet are our necessities and it means we can get connected with others, see what’s happening in the world, find information and so much more.
Beautiful fall days. I love them. The temperature is wonderful, the low humidity means my sinuses and ears aren’t affected and that is heaven, the changing colours are gorgeous and no pollens to aggravate the allergies…it’s the perfect time of year for me.
My fans. I have 2 fans, as you can see. The oscillating fan that I keep on my desk and the box fan that I put in the window when the temperatures get too hot. Must stay as cool as possible.
My Walkman. So many ways to soothe the soul. I have music, books and comedians to listen to and enjoy on my Walkman.
(Image via Amazon.com)
A heating pad.For those achy days. We all have them. It’s like a warm hug.
(Images via Amazon.com)
Wonder wash and counter top spin dryer. Walking to the laundry mat in the winter can be hazardous if the sidewalks are icy or not clear. Having to keep looking up and down starts to make my head spin and I have to return home with dirty clothes. And humid, summer days affecting my sinuses and ears means I may be feeling like I’ve just had a turn in the washing machine. I found this solution on Amazon. I can do a quick wash and the spin dryer gets out more water than I can by hand-wringing (a luxury or a necessity, depending on how I’m feeling that day). I hang the clothes to let them to dry and I’m good to go with clean clothes. They don’t replace a washer and dryer, but they’re great in a pinch.
Medication. Along with the prescriptions, I also take allergy and vitamins pills. When I’m not feeling that great, I don’t eat that well, so every little bit helps.
Reading. It doesn’t matter – books, newspapers, magazines – I enjoy them all. If I were rich, my house would have a sunny room dedicated as a library.
(Image via Stashtea.com)
Stash Chai tea. My favourite tea. Don’t serve me any other brand of chai tea. It’s not the same, so don’t even try. Also, hot chocolate with a bag of chai tea steeped in it is wonderful on cold and dreary days.
My cell phone. Not the dude, just the phone. I rarely use it but always take it with me when I leave the house. If I start feeling sick can call a cab to bring me home. Even if I’m only a couple of blocks away from home ( I can’t walk far), I don’t want to risk the dizziness making me lose my balance and veer into traffic.
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.
In honour of Health Activist Writer’s Month Challenge, today’s Sunday Quotes is about Activism.
An activist is one who is actively involved in creating community, whether that is locally in their neighborhood or internationally. It is an admirable quality. Jasmine Guy
An activist is someone who makes an effort to see problems that are not being addressed and then makes an effort to make their voice heard. Sometimes there are so many things that it’s almost impossible to make your voice heard in every area, but you can sure try. Joanne Woodward
I have referred to myself as an accidental activist on more than one occasion. Joan Blades
I think the importance of doing activist work is precisely because it allows you to give back and to consider yourself not as a single individual who may have achieved whatever but to be a part of an ongoing historical movement. Angela Davis
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.
