the abcs of disability

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

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!

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 “S”

This Just In…

Having a chronic illness sucks!  With an “s”.

Having a chronic illness that is invisible really Sucks!

With a “bleeping” big, capital “S”.

I know I’m not saying anything that is earth-shattering.  But there are times when it needs to be said, even if it’s to ourselves.  Even when we’re having a good day.

Having an invisible, chronic illness is like living with a child who has temper tantrums.  Some days the child is really acting up, some days just lying low and a few precious days where everything is all right with the world.

For me, my main problem is vertigo. At 37 years of age I had to start learning to live with, and tolerate, the whims dictated by my inner problem child.   I don’t know when it will strike.  I can do very little to prevent it.

I feel like I’m in a strange, strange limbo.  I read other blogs where people have Meniere’s Disease and I am not on the same level as some of them.  I don’t get the vertigo so bad that I have to lay down for hours or days while throwing up.  My mother had Meniere’s Disease and she would suddenly yell to get the bucket because she would get dizzy and start to throw up.  She started leaving plastic bags in the glove compartment in case she would throw up.  Unless I’m feeling really drained, unbalanced or I’m sick, I can walk the couple of blocks to run an errand.

Yet, it’s bad enough that I can no longer work.  I have to keep my head looking forward as much as possible when I walk (which I now have to do at a slower pace) or sit.  I have to keep my head in my hand a lot of times to keep it still while I sit at my desk and lie down off and on during the day so I don’t get too tired or unbalanced.  I get most of my things online or get one of the people I live with to get me something.  I feel myself become unbalanced when the weather changes.  The weather!  Something else I can’t control.

For me, that’s one of the biggest problems which leads to some of the biggest fears that I’m learning to face.  I, like that temperamental child,  am out of control.   I can’t control my ears, can’t control my balance, have to plan to try to do things on certain days or, plan to try to not do too much if I know I have to go to an appointment.   Even though I try, many days I’m just not successful.   Can’t control this, can’t control that.  Can’t control my life.

Yoda was wrong when he said “Do or do not… there is no try”.   Some days, trying is the best we can do.