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?

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.

ABCs of Disability – The Letter A

A is for adversity.  Normally, adversity is viewed as a negative.  However, there are people who are amazingly proving this wrong.

I recently watched a video from TEDMED which is part of TED.  If you haven’t heard about TED, TED stands for Technology, Entertainment and Design and started out as a conference in 1984.   Now…

Along with two annual conferences — the TED Conference in Long Beach and Palm Springs each spring, and the TEDGlobal conference in Oxford UK each summer — TED includes the award-winning TEDTalks video site, the Open Translation Project and Open TV Project, the inspiring TED Fellows and TEDx programs, and the annual TED Prize.

Their about page explains:

On TED.com, we make the best talks and performances from TED and partners available to the world, for free. More than 700 TEDTalks are now available, with more added each week. All of the talks are subtitled in English, and many are subtitled in various languages. These videos are released under a Creative Commons license, so they can be freely shared and reposted.

This list of tags shows how diversified the talks have become.

The speaker in the video I watched is Aimee Mullins and was filmed in 2009.  Aimee is an amputee who was a record-breaker at the Paralympic Games in 1996, and she talks about adversity and how adversity can be used positively in life.

It is 22 minutes long but goes by really quickly.   I found her quite engaging and inspiring as she talks about her life, her disability and how words and language label us and affect our thinking.

Here’s the link to the video. There is also a link to a transcript on the right-hand side of the page.

Enjoy and be inspired!

The ABCs of Disability

After all these years, I’m still not sure how I feel about being a person with a disability.  I know that once I got on disability, in ways, a whole new world opened up for me.  I had more options precisely because I am now labeled disabled and not just a person with something wrong with her .

But, mentally?

I still have days when the anger and frustration at not being healthy get the better of me.  One day I’m healthy,  feeling fine and going about my life.  And then the switch is turned to  “Throw  into land of disability.  Good luck with that”.  The range of emotions that take over is endless and always changing.

So, in a totally selfish and very deserving way, I’m going to start “talking” about the different emotions I’ve been feeling over the years and some different ways I’ve been dealing with everything.  Some  are bad, as you would expect.  Some have been powerful and helped me out during some dark times.    Some days are bright sunshine with nary a speed bump while other days are full of chaos, both mentally and physically.

I’ll probably have some really short posts at the beginning until I get used to writing about my feelings and actions.  I’m not sure how much I want to write in a public blog.  I’ll find out when I start, so this could get really interesting for me.

Because there comes a day where you need to acknowledge what you are feeling, what you are doing, are you learning anything and can you do it better.

And that time is now.