Saturday, September 21, 2013

Why Chronic Illness Isn't Ever Cool

In modern society some chronic conditions are rather trendy. They are things to be aired out on the lawn for all to see, all to hear, spoken just loudly enough to draw attention to themselves.

Even in that, I would never want a person to feel ashamed of their actions. If a person is truly suffering, perhaps this is the only way they can think of to reach out and find common ground with other people that maybe can share in a similar story. Even better...ask more specific questions, as they believe they may have what you have. Maybe they will also go to the doctor and be given the same label.

This annoys some in the chronic illness community but to me...the desire to have any label is also in and of itself a chronic illness. And I started this blog for them too.

But what if you are 26 years old and have run out of diapers. You are broke for the rest of the month because baby wipes are very expensive, as well as the multiple trash bags that fly away, carrying that stench away...

What if you are 26 years old and you ran out of these supplies and they are not for a baby, but for you?

The photo is of specialty sized youth diapers. And they are for me.


How does this happen to someone in their 20's but otherwise have their faculties about them?

Truth is I do not.

For the past year those signals have been misfiring. Sharp stomach pain didn't mean simply that I was having a bad day as far as digestive health. It could also mean that I needed to do a straight in and out cath on myself.

And here more recently: my last ER visit. I got a CT of my abdomen. The doctor asks if I've used the bathroom that day.

I hadn't. ..but said I hadn't needed to.

He just shook his head and walked away.

"She is completely insane..."

But as I thought about it, more and more often than not since the start of this month I was having a lot of accidents. At first it was just regarding fecal matter and could be chalked up to any number of things...

But soon after I began to lose bladder control. Both of which became impossible to conceal. I desperately grabbed items off the store shelves, alone this time, because the last product didn't work. Slowly you have tried doubling up on items. You try to put yourself on a "schedule".

But you must understand...with me, the minutes and months have become the same. In this lifetime of hospitalizations all time as become either a snow drift or a low burning flame. It is insignificant, one and the same.

In desperation I scrolled the medical supply boards and saw the item I took a picture of. I had read the reviews already and was maybe too excited. A quality product by First Quality. I asked for as many as possible and in the meantime waited.

Waiting with building anxiety.

Waiting as I soiled two chux pads every night.

Waiting as I burned through the product -- Pampers Underjams -- that had therefore worked the best.

Then these came. An actual diaper that took a few times to fasten myself into. It was difficult as not many diaper themselves.

Usually, when this product is used, the person is unable to do for themselves.

But I fought too hard for my own independence to let this alone stand in my way

And it hasn't.

In fact, a diaper has given me my independence back. For the first time since this started I did not need to worry about spills happening outside my home. And when I came forth to tell a few people what was happening I was met with nothing but support.

This blog is about living and coping with chronic illness. This is part of it for some of us. None of this is a problem anyone would want to have. Incontinence is an uncomfortable subject, afterall.

This only happens to those not "right in the head".

Helpless seniors in a nursing home.

Helpless babies on the changing table.

It also happens to mortified people, who at one time didn't deal with this, but now have to. I didn't want to write this. I didn't want to admit this. But as I was met with love and understanding, I wanted to meet you with love and understanding by sharing my story.

This is part of it.

Somewhere out there, there is another. Another who is terrified to leave the house. Another scared that this isn't normal.

Normal is crazy! There is no normal!

When I needed someone they were there. And the same is true of others. The odor that ranks in nursing homes is of neglect from personnel who do not respond quickly. Or of someone who doesn't know better...

...or of someone who cannot feel it, as in my situation.

I'm not alone.

And neither are you.

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