ABCs of Disability

ABCs of Disability – The Letter E

 

EMERGENCY:

1:  an unforeseen combination of circumstances or the resulting state that calls for immediate action

2:  an urgent need for assistance or relief <the mayor declared a state of emergency after the flood>

 

What will you do if there is an emergency? An earthquake, tornado or hurricane? What if there is a major power failure along the lines of the Northeast blackout of 2003?  In this technological age, it seems like everyone uses computers to run things these days and we are so dependent on everything running smoothly. Yet it was a software bug that was the primary cause of the blackout.

Have you thought of or planned for an emergency?

And how do you plan differently if you are disabled or you are a caregiver for a person with a disability?

We can never be too prepared or too organized in case something happens. The Government of Canada has an Emergency Preparedness Guide for People with Disabilities/Special Needs  page to help you create an emergency plan and kit.

This builds onYour Emergency Preparedness Guide (Step 1. Know the risks, Step 2. Make a plan, Step 3. Get an emergency kit) from the pull-down menu under Your Emergency Plan which also includes plans for children, pets and service animals and staying in touch during emergencies.

Below is the table of contents if you would like to read a particular section.

 

Table of Contents

 

There is a wealth of information on the site to help you prepare. This is not a subject people like to think about, but we must.

Because you never know when an emergency will be just around the corner.

ABCs of Disability: Signs

I read an interesting article recently about being kind and gentle to one another. The author wondered if it would be easier if we wore signs when we were having problems instead of wearing masks and pretending that everything is OK. The signs would say what was wrong so that people would  immediately understand and those in pain would be treated kinder and gentler.

Because when things aren’t OK, there are signs. Some are subtle, some glaring. Forgotten lunches. Darker circles under the eyes from a lack of sleep. Being sad. Being angry.

It is a busy world today. No different from any other time. But, we still notice the signs that something is not right in another’s life. And when you notice the sign, what do you do?

Do you ignore it, busy with your own stresses and responsibilities? Does it get mildly noticed in passing, but not really registering? Or do you make assumptions about what the other person should be doing with their lives so that it doesn’t interfere with your own?

The author, Melody Ross, talks about her experiences. Her husband was in an accident, had a brain injury that lasted several years and was not in a good place. During this time his personality changed and many times he could not remember things but, there were times he was back to his old self.

During one of these lucid times, she explained their financial situation and he made arrangements to have different vehicles from their farm lined up by the road, but still on their property, with a sign saying they were for sale and the prices. And, you guessed it. Someone had to call and complain about what they considered an eyesore.

It only took a few hours to receive the angry call. The caller  said things such as it was bringing his (the phone caller) property value down and why would you do something like this. Melody’s husband responded in a wonderful way.

“Sir,” he said, “There was a time in this country, in this community…when if you drove past your neighbor’s house and saw every single thing they own was for sale in front of their house…and that their lawn had not been mowed for weeks….that you would stop and say….WHAT IS GOING ON, SOMETHING MUST BE TERRIBLY WRONG, WHAT CAN I DO TO HELP YOU?”

Those of us with chronic illness know there are signs but, so many times, we try to hide behind the mask of “I’m doing OK”.  Chronic illness takes so much of the “normal life” away such as the energy to drive to appointments or cleaning your home. But, we struggle with asking for help.   has an article at KevinMD.com on How to ask for help when chronic pain or illness strikes.

If you know someone who has a chronic illness or disability, what can you do to help?

The American Psychological Association has an article on giving support to family or friends who have a chronic illness. And this post from Living with Gastroparesis has a wealth of ideas on how you can help, with ideas and suggestions on what to give someone, what not to say or assume (so important) and different things that you can do to help give those with chronic illness a break from their responsibilities.

There are so many ways you can help. Are you seeing the signs?

ABCs Of Disability – The Letter G

(Image via peacepulse.blogspot.com)

I haven’t really done much posting lately about disability or chronic illness. Part of it is not being on the computer as much since I fell last month. I was at the doctor’s on Friday and I’m having x-rays done on my ankle and wrist to make sure nothing was broken. My ankle keeps getting better but my right wrist has only healed to a point. And, of course, I am right-handed. So, I’ll go get the x-rays done and see if I have something like a hairline fracture.

But, mostly, I think it’s because “Spring Has Sprung”. Finally! The temperatures have been warming up, finally going into double-digit (Celsius) numbers. As of this writing, it looks like we’ll be going two (2) whole days with no rain! April has been wet and cold. And did I mention wet and cold? Now, I either don’t have to wear a coat or only my raincoat. We can go out and play! Attitudes are changing and good moods are coming back.

(Image via  hitchsafe.com)

Allergies have been kicking into high gear for those of us who suffer, but that’s OK because it means green and growth. Grass is growing, buds are on the trees, birds are chirping and the leaves of the perennials have been sprouting from the ground. Tulips have already bloomed. Others flowers will be in the next week or two.

(Image via viewthrumygloballens.blogspot.com)

So, I’ve been thinking of different “G” words lately. Growth, green, good and good enough. Spring is here so there is growth and green all around.  At times I’ve been feeling good, or at the very least, good enough most days to enjoy everything changing from dreary to sunny. And sometimes being good enough is very good indeed.

(Image via bbc.co.uk)

Spring is here!

Sunday Quotes on Hope

(Image from rishikajain.com)

I find hope in the darkest of days, and focus in the brightest. I do not judge the universe.

– Tenzin Gyatso, 14th Dalai Lama

You will face many defeats in your life, but never let yourself be defeated.

– Maya Angelou

My hopes are not always realized, but I always hope.

– Ovid

Everything that is done in the world is done by hope.

– Martin Luther

While there’s life, there’s hope.

– Marcus Tullius Cicero

Life is meaningless only if we allow it to be. Each of us has the power to give life meaning, to make our time and our bodies and our words into instruments of love and hope.

– Tom Head

Never give out while there is hope; but hope not beyond reason, for that shows more desire than judgment.

– William Penn

You Still Have Hope

If you can look at the sunset and smile,
then you still have hope.

If you can find beauty in the colors of a small flower,
then you still have hope.

If you can find pleasure in the movement of a butterfly,
then you still have hope.

If the smile of a child can still warm your heart,
then you still have hope.

If you can see the good in other people,
then you still have hope.

If the rain breaking on a roof top can still lull you to sleep,
then you still have hope.

If the sight of a rainbow still makes you stop and stare in wonder,
then you still have hope.

If the soft fur of a favored pet still feels pleasant under your fingertips,
then you still have hope.

If you meet new people with a trace of excitement and optimism,
then you still have hope.

If you give people the benefit of a doubt,
then you still have hope.

If you still offer your hand in friendship to others that have touched your life,
then you still have hope.

If receiving an unexpected card or letter still brings a pleasant surprise,
then you still have hope.

If the suffering of others still fills your with pain and frustration,
then you still have hope.

If you refuse to let a friendship die,
or accept that it must end,
then you still have hope.

If you look forward to a time or place of quiet and reflection,
then you still have hope.

If you still buy the ornaments,
put up the Christmas tree or cook the supper,
then you still have hope.

If you can look to the past and smile,
then you still have hope.

If, when faced with the bad,
when told everything is futile,
you can still look up and end the conversation with the phrase…”yeah…BUT.,”
then you still have hope.

Hope is such a marvelous thing.
It bends, it twists, it sometimes hides,
but rarely does it break.

It sustains us when nothing else can.
It gives us reason to continue and courage to move ahead,
when we tell ourselves we’d rather give in.

Hope puts a smile on our face
when the heart cannot manage.

Hope puts our feet on the path
when our eyes cannot see it.

Hope moves us to act
when our souls are confused of the direction.

Hope is a wonderful thing,
something to be cherished and nurtured,
and something that will refresh us in return.

And it can be found in each of us,
and it can bring light into the darkest of places.
NEVER LOSE HOPE!

~~ Author Unknown ~~

The ABCs of Disability – The Letter “Q”

(Quality of Life Factors

Image from The Association of the British Pharmaceutical Industry)

Q.

As in “Quality of life”.

This is what the ENT said to me at my last appointment.  To recap, he said he didn’t know why I have balance problems and problems with my ear.  He added that this problem happens to more people than what people realize but, unfortunately, there was nothing more he could do for me.

Then he uttered that one sentence.  That one suggestion of how to cope.  How to deal with what I’ve been dealt.

The one that basically sums up my life sentence for having an invisible chronic illness.

“Try and find a quality of life.”

I asked a couple of questions but really, that was the end of the appointment and his ability to help me.  He was very kind and professional in the way he was telling me all of this but, this is what I took away from it.

As an ENT, he can’t tell me what is causing all of this or cure it, and basically I’m fucked and find a way to deal with it all.

And, there you have it.  I get a specialist finally giving me the acknowledgement and a medical diagnosis of what I always knew – that there was something physically wrong with me – but there really isn’t much that can help me.

Welcome to the chronic illness community and finding a quality of life!

So what, you may ask, is “quality of life”?  According to Natural Resources Canada, the following is their definition.

‘Quality of life’ is a term used to measure well-being. Well-being describes how well people feel about their environment, and collectively these feelings can be thought of as quality of life. To assess quality of life, indicators are used to represent the most important aspects of a person’s life (called domains), which include, for example, housing, education, employment and household finances. Indicators are used to measure complex phenomena (such as quality of life) and can only provide us with an indication of the actual quality of life.

But how does the medical community try to reconcile “quality of life” with their patients?

Here’s a link to The Association of the British Pharmaceutical Industry who held a conference in 2001 with The Long-Term Medical Conditions Alliance in 2001 about quality of life and health care decisions and where such things as how to measure quality of life, quality of life and clinical trials and involving patients in determining their quality of life were discussed.

While there are many concerns that are shared by people dealing with chronic illness, ultimately everyone’s definition of  quality of life is dependent on a variety of factors that are uniquely their own.  What kind of illness do you have?  Are you in pain a lot or a little? How’s your stress level?  Are you able to work?  How have you been sleeping lately?  Did you and your significant other have a fight?  Do you have a significant other?  Can you safely get around?  Are you housebound?  Do you have to live in a care home?  Do you have support from others? How independent have you been able to stay? How much care from your doctors are you able to get?  Do you even have a diagnosis yet?

Having a chronic illness is life-altering for many people.  You have to acknowledge what you have and what your limitations are, or may be, and go from there.  It’s a completely new and overwhelming experience that we wouldn’t wish on anyone.  We are all learning as we go along and it’s definitely a live and learn experience.

There are many phrases that are uttered without much thought, that are throw-away phrases of a conversation.  “Live and learn” can be one of those phrases.

But, ask a person living with a chronic illness and you’ll find out that learning how to find a quality of life truly is a live and learn experience for us all.

The ABCs of Disability – The Letter W

(Image from We Heart It)

There are always articles about people who are dealing with an illness who say they never think of the question “Why Me?”.

I don’t buy that!

“Why?” is one of our favourite questions.  We are curious creatures.  We ask because we want to learn and understand.

I think it’s only natural to ask the question.  We tend to not ask the question that often when things are going well in our lives.  It is in our darker moments we will ask “Why me?”.  It may, at times, even come out as “woe is me”.  We all know we have our up-and-down days.  Days when we are  stressed, sick, in pain,  angry and depressed because it seems there is only so much that can be done to help us, or worse, nothing that can be done to help us.

And when we feel at our loneliest, when we are struggling with the complexities of being worn down by our illness, it sometimes feels like we’ve been sent into some sort of chronic illness exile but we don’t know why.

But, equally important when we are living with a chronic illness, is the medically curious question “Why me?“.  What is it about me that made me sick?  Was there something or someplace that I could have avoided? Is it genetic? What about viruses?  Environmental?  Did I not eat enough dirt as a kid and develop an immunity?

The list can go on and on.  So can the emotional upheaval if we think asking why is a bad thing to do.

I think asking “Why me?” is a legitimate question to ask.  To ask “why” is to acknowledge what is happening to you and to seek some understanding of what is happening.  Scientists ask the question all the time.  And we are all our own scientists.  We know how we are feeling, we know when something “just isn’t right”, we know when we’ll have a good or bad day.  We know this because we ask the question, pay attention to what is happening to us and we learn.

We may have people in our lives who think we shouldn’t ask the question, not to torture ourselves.  They mean well.  They don’t want to see us suffer but by denying what is going on and what we are feeling doesn’t help us.  It only hurts us.  Ignorance may be bliss in some situations, but not ours.

I don’t know.  Maybe it’s because people are afraid.  Afraid of the unknown or, depending on the knowledge of the disease, afraid of the known.  What eventually does stick with us is the word “chronic”.  It’s not going away.  It’s not an acute illness.  There is no “band-aid” of some sort that will make us better.   Having a chronic illness means that, for many, there will be major adjustments that will be with us for the rest of our lives.

That is why we have to be our best advocate and as our best advocate we have to be as proactive as we can.  We have to ask why.  We will have barriers put in front of us that we thought would never happen.  Friends, family and even our doctors not believing us.  Finding out that little is known about a particular disease and that there doesn’t seem to be as much research being done as with other illnesses.

However, we are very lucky.  If we can afford the internet, we have access to information and online support that we otherwise may not have or would be hard for us to gain access to.  There will be times when we are soaking up information and times when we are on information overload or brain fog kicks in.   But, we owe it to ourselves to ask “why” and whatever other questions that will ultimately help us.

The ABCs of Disability – The Letter V

Oh Crap!  I’m getting another cold!    AKA “V” is for virus.

I’ve started writing this early on Sunday morning so hopefully this post will make sense when I’m done.  Sorry for any mistakes you’ll find.  I’ll probably post this on Tuesday.  Well, that’s my plan.  My sleep has been screwed up for the past month since my last cold.  I’ve been going to sleep later and later and now it’s normal for me to fall asleep anywhere between 4 and 6 in the morning.  A few times it’s even been 8 or 9 in the morning. I’ve tried to get back to my normal time of around midnight, but no such luck yet.

I naturally wake up around 8 or 9 am.  So now, my night’s sleep is only a few hours.   I’ve tried napping in the day, not napping till I go to bed, napping in the evening…all for naught.   And, add some hot flashes to the mix, just for good measure.  Which can only mean one thing.  I’ve been stressing my body so much due to inconsistent and irregular sleep that I’ve now caught a cold.

I hate having colds now.  Before chronic illness entered my life, I would get a cold and take whatever medication seemed best.  The cold was usually gone in a week or so, sometimes less.  I rarely had to take time off from work.  Just one of life’s minor inconveniences as the colds never developed into anything further.

As for the flu, I got that even less.

But, the irony of it all, it was a flu virus that started me with my new life with chronic illness.

Thankfully, I still don’t get the flu that often.  But, I also get a flu shot each year.  What I do get each winter is, on average, 4 colds.  But, they’re different for me now.  My body loves tormenting me, making sure I understand what’s coming.  I’ll start off with a scratchy or sore throat.  Maybe get that achy feeling.  This lasts a few days.  Then the symptoms go away and I start to feel better.

As you can see, my colds are big, big teases.  Colds are also labelled  acute illnesses.  There is nothing cute about them.

About a week afterwards, I get the cold, full force.  And it doesn’t go away within the week like they used to.  No, mine now stick around for a couple of weeks.  So, at the very least, January,February and March I have a cold, am getting a cold or getting over a cold.  And at some point in the fall I usually have one.

Our bodies are already stressed, tired and depending on your illness, your immune system could already be compromised.  Getting a seasonal virus just amps the stress levels.   It could also lead to more complications and illnesses.  For example, colds add more stress to an already stressed body in diabetics affecting their blood sugar levels.  If a person has heart disease, and if there is complications such as a lung infection, the heart has to work harder because the person is not getting as much oxygen as efficiently as before the virus.

Here’s the link to the WebMD article “Colds and Chronic Medical Conditions” where I got the two previous examples.   The second page of the article has different tips on preventing colds if you have a chronic medical condition.

By the by, my favourite tip?  Regular exercise.  Because that’s what many of us with chronic illness can do on a regular basis.  (OK, snarky part is over.)

I also found an article from 2000 in the Journal of American Medicine Association (JAMA) called Impact of Respiratory Virus Infections on Persons With Chronic Underlying Conditions.  It confirms what we already know.  If you have a chronic illness, you are more likely to have complications.  And not surprisingly,  your level of income is also a deciding factor.  Here’s the results and the first paragraph of conclusions from the article:

Results Ninety-three percent of patients older than 5 years had a chronic underlying condition; a chronic pulmonary condition was most common. Patients with chronic pulmonary disease from low-income populations were hospitalized at a rate of 398.6 per 10,000, almost 8 times higher than the rate for patients from middle-income groups (52.2 per 10,000; P<.001). Of the 403 patients (44.4% of adults and 32.3% of children) who submitted convalescent serum specimens for antibody testing, respiratory tract virus infections were detected in 181 (44.9%). Influenza, parainfluenza, and respiratory syncytial virus (RSV) infections accounted for 75% of all virus infections.

Conclusions Our study suggests that respiratory virus infections commonly trigger serious acute respiratory conditions that result in hospitalization of patients with chronic underlying conditions, highlighting the need for development of effective vaccines for these viruses, especially for parainfluenza and RSV.

So, take care of yourselves, folks.  If you do find yourself with a virus, you know the drill.  Get some rest, plenty of fluids and the appropriate medication.  However, please be careful and know what’s in your over-the-counter medication.  You don’t want to do something like take a couple of  extra-strength Tylenol and then sip on a Neo Citron which also has the equivalent of one extra-strength Tylenol.

And remember, it’s already the middle of winter.  We’re half way through cold and flu season.

Then we can start to celebrate allergy season.