living with a chronic illness

NHBPM – The Best Doctor’s Appointment And What It Meant To Me

Welcome. This post is part of the WEGO Health National Health Blog Post Month (NHBPM) challenge for November, 2012.

The best doctor’s appointment I ever had was when I was diagnosed with an unspecified inner ear disorder. The ENT doctor could not give me a specific diagnosis but I didn’t care.

I finally had a diagnosis from a specialist.

This meant that I legitimately had something wrong with me. My illness was no longer a mystery. While I rarely have vertigo, people understand the word dizzy and try to understand when I explain that I experience disequilibrium each day.

This meant that the people who didn’t believe me were proven wrong.

This meant that I was able to start moving on from the bitterness of people not believing me.

This meant that I could start finding some information on how to deal with the illness.

This meant that I was able to apply for disability with a specific diagnosis. I applied a few years before but lost because the doctors hadn’t discovered what was wrong with me at that point.

This meant that I was approved for disability. No one wants to reach a point where they have to live on disability but I’m very happy that such a program is in place.

This meant that my stress level went down considerably.

This meant that because I rent a room in a house and not an apartment, my rent is small enough that I can save money while still eating healthier.

This meant that I was able to get the internet.

This meant I was able to shop online for anything I could need without having to leave the house. A luxury for healthy people. A life saver for people with chronic illnesses who have a hard time shopping or needed others to always shop for them.

Ultimately, the best doctor’s appointment meant that I was able to get the ball rolling for me to apply and be approved for disability. Living on disability certainly has its challenges and is not how I thought I would be living. But, when your life changes so drastically due to a chronic illness, one doctor’s appointment can become the best one ever.

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ABCs Of Me – The Positive Side Of Chronic Illness

(Image via allgraphics123.com)

My mother would often say “There are days…and then there. are. days.“! We have all experienced, and continue to experience, the sometimes very negative side of living with a chronic illness. However, as with most things, there is a positive side to chronic illness as well.  We learn some hard-earned lessons, we adapt to our changed lives and we find some little treasures to hold and cherish.

It took a while to get this list done. I’ve been in a down frame of mind lately but it’s always good to think of some of the positives that are part of my life.

And, here’s the link to the vent-fest called The Negative Side Of Chronic Illness. (One of the positives of chronic illness: v for venting.)

a – appreciating things more – I know I could “stop and smell the roses” before I got sick. Now, it’s all the smaller things that I’m really noticing now that I can’t work and I can see different things during the day.

b – blogging – There is nothing like knowing that others understand what we are going through not just physically, but mentally and emotionally.

c – credit card – It’s so easy to buy something now and I don’t have a physically stressful experience having to go out and get something I need.

d – daydreaming –  I have more time to do it.

e – exercise bike – Some days I can’t go outside (weather) or if I’m getting back on my feet after having a cold or a bad balance spell, it’s a great way to start exercising again.

f – fans – I have a box fan in my window and an oscillating fan on my desk. We don’t have air conditioning so they help keep me cool.

g – games (online games, crossword puzzles, jigsaw puzzles) – I find them relaxing and some make me think a bit. Use it or lose it.

h – HOT GUYS! – There’s always time to take a look at a hot guy or few, especially now that it’s summer and the heat wave is here. Or, like the firefighter who was entering the grocery store just as I was leaving it. Man in uniform…need I say more?

i – internet – I can get lost exploring different subjects.

j – joking around with people – Silly jokes, old jokes, one-liners, dark humour…jokes help keep us going and brighten our day.

k – kindle for computers–  Although, I am holding out for a great, but cheaper, tablet where I can have colour and propriety doesn’t matter.

l – laptop – For the times when I need to lie down but I can still use a computer

m – music and movies – They can take me away from my illness

n –  never ending  belief – The  never ending belief that things will get better.

o – oatmeal – I never used to eat oatmeal but I started when I was still working and wanted something quick to make. Now, it’s rare when I don’t have it. The day doesn’t start right without my oatmeal. (Do I sound old saying that?:) )

p – pictures of cute animals – We all need some awww moments and that’s what the pictures (and videos) do for me.

q – quiet time – I love laying in bed and listening to what is going on outside the house, especially the weekends.

r – roommates – I’m really lucky I have people who will help me out in various ways when I’m having bad days.

s – sunshine – Just feeling the warmth from the sun helps make me feel better.

t – treats  – Treats come in different forms, not just food (or chocolate…yuummm) but massages, new music, hugs. The list is endless.

u – understanding what it’s like – ‘There is nothing like being able to talk to people IRL who get it.

v – venting – Love it, embrace it, let it help heal the soul and to get things off your chest.

w – wonder  – Still being able to find the wonder in things, especially while going through a rough time.

x – x marks the spot – Finding those little treasures each day, just like on a pirate’s map.

y – YouTube – Lots of interesting finds, lessons, humour, and more cute animals and kids.

z – zippers – Much less hassle than buttons. Actually, most of my tops are tank tops and I’ve started accumulating some bottoms with elasticized waists again. Because they never went out of fashion, right? 🙂

Living With A Chronic Illness

I miss my old self.

I’m a homebody.  I enjoy being with people but I’m a homebody.  I did the parties and going out to the bars when I was younger but I was also happy to go home, waking up the next day secure in the knowledge that I was home safe and sound, the car was parked where it was supposed to be and I had enjoyed a fun night out with my friends.

I grew up a bit, worked on some issues,  had a job at a company that I enjoyed and liked the people I worked with.

I had my own apartment, my own stuff and even my own kitty cat.

Sounds great, doesn’t it?  Then I started thinking and making plans.

I started thinking about going to university.  I never did that after high school.  After high school the plan was to work for a year and with the saved money go back to school.

However, at the time, leaving home was mentally and emotionally  more important and I was on my own a couple of months shy of my 19th birthday.  Looking back, I wish living on campus was an option that I considered.  I can’t even tell you if I thought about it or if I needed to be on my own that badly.  I think I needed it that badly.  But you have to try and live life with no regrets.   Most things that we think of as regrets really aren’t and  only hold us back.  We did what we did at the time  and there is no going back, we can only move forward.

With this lesson learned by my thirties, I started feeling settled.  Started feeling more sure of myself.   Started making plans.

And then I got sick.

And life was never the same.

When I describe events in my life,  I usually refer to them as either before or after I got sick.

It’s hard to describe to healthy people how you can’t do things anymore.  How there is no “normal” in the normal sense of the word.  Not when you go years with the doctors not being able to tell you what is wrong with you.

At least I now know that my ears are part of the problem.  My ears give me a domino effect of feeling unbalanced which leads to a loss of appetite or an upset stomach, a lack of exercise and feeling tired.  And just for fun, it happens again and again as these side effects keep building upon each other.  Throw in some air pressure changes and bingo!  I’m either sitting or lying down for most of the day trying to keep the dizziness at bay.

But, catch me on a day where I can walk the two blocks and pick up a few groceries while doing what I can to not throw my balance off, and it doesn’t look like I’m sick.

Or, worse, it looks like I’ve been drinking because I will still stagger a bit while I’m walking.

The wonder of my invisible chronic illness.  Consume no alcohol but still appear drunk.  Maybe it wouldn’t seem so bad if I had a bit of a happy buzz happening but no, can’t have a good side effect now, can I?  (Must be some law of the universe.  lol!)

I’m glad people don’t understand what we deal with on a daily basis because I wouldn’t wish living with an invisible chronic illness on anyone.  But, the last number of years  could have been so much easier and not as lonely if people  were less afraid.  Like so many others, I have lost friends who didn’t understand, didn’t try to understand or had their own problems that they didn’t want to have to think about or deal with the problems of someone else.   The stigma of not being “normal” has to fade away and die.

You see that happening now as the aging population is dealing with a variety of illnesses and disabilities.  Having something wrong with you, something that is not easily fixed or explainable is a very scary prospect for everyone involved.   How do you fight something you can’t even name?  Or an illness that has a name but the knowledge and technology to fix it doesn’t exist yet?  We all want to fight back.  We all want to get better.  This is not how we thought we would be living the remainder of our lives.  We can’t just “get back in the saddle” and ride towards a healthy and fulfilling life.  That option has been taken away from us.

There are so many misunderstandings and misconceptions that people have no idea how they act, or not act, around us.

And people don’t understand how much control is lost when someone becomes chronically ill.  Physically, emotionally, mentally and for some people,  spiritually lost and out of control.

While you do live with the illness, it can also consume you and consume the person who was once you.  And there is no going back.

You have to make adjustments to your new life.  Some work better than others.  Some, not at all.  And it’s an ongoing process because what works at one point…stops.

And the learning curve becomes  steep once again.