Does Chronic Illness Mess With Your Emotions?

To be honest, I've been in a crummy mood lately.  There are a lot of reasons why, but I'm afraid if I use this post to list all the reasons, it is just going to reinforce the grumpiness.  So instead, I'm going to explore the connection between emotions and chronic illness, because I think being chronically ill can definitely mess with your emotions.

The Challenges of Chronic Illness

Let's start by looking at the daily challenges of living with chronic illness.  I think it comes down to seven main sources:

1. the physical challenges that come from living in a body that doesn't working properly anymore
2. the reduced physical and/or mental capabilities that are the direct result of being ill
3. the stress and fatigue of living with it day-in and day-out
4. the need to adapt to fluctuating health status and changing medical care
5. all the financial challenges, like huge medical bills and a reduced income potential
6. the repercussions on relationships with family and friends due to the above challenges
7. the impact living with chronic illness has on your self-image and self-worth

Chronic illness can seem like an endlessly deep and dark pit I could easily get swallowed up by.

Some days I cope better; others days not so much.   That's when I use all the strategies at my disposal, like:

• having fun every day
• snuggling with my pets
• getting lost in a good book, movie or TV show
• heading out to my container garden
• dabbling in arts and crafts
• getting hugs and a kisses from my husband 
• connecting with others--especially others living with chronic illness too

The truth is I'd love to just get well.  Or just get Zen enough to rise above my problems to a place where they don't touch me.  Even a brief vacation from my troubles would be nice.  Too bad none of these things are truly possible.

So I muddle through and do the best I can do, which I know sounds cliché, but then really, what other choice do I have if I want to still get some good things our of life?

An Avalanche of Emotions

No matter how well I cope, I am still faced with living a life filled with daily challenges.  At times, life with chronic illness can be very stressful and full of tension, fear and uncertainty. Living under this constant burden, a few emotions are bound to come up!

Some of the ones I've become very familiar with are:

• helplessness
• frustration
• loneliness
• hopelessness
• sadness
• resentment
• irritability
• anger

Most people would say these are "negative" emotions or feelings.  Personally, I don't like to label them this way because it makes harder for me to deal with them.  What serves me best is to acknowledge that all emotions need to be felt and experienced in the moment to make room for the other emotions that will come after them.

In other words, you won't be able to feel the "good" stuff if you avoid feeling the "bad" stuff.

An Increased Vulnerability to Stress

Adding insult to injury, I know many of us live with chronic pain and fatigue conditions that affect how our brains and nervous systems function.  Or should I say malfunction. Our chronic illnesses mess with our bodies' ability to regulate bodily functions like our hormones, neurotransmitters, immune response and sleep cycles.

In short, chronic illness makes us physically more susceptible to the adverse effects of stress.

I know when I get excited about something good happening or get worried about something bad, my body takes those impulses and completely blows them out of proportion.  My wonky nervous system gets thrown into the fight-or-flight response: my heart rate goes up, I get revved up, I'm jumpy, my muscles are more tense, my stomach is upset and I have more problems sleeping. While I can understand this kind of physical response in reaction to worry and stress, I am still taken aback when this happens as the result of hearing good news or anticipating something fun happening.  I mean, how strange is that?!?

Even with the use my coping tool box filled with reassuring self-talk, meditation, use of my emWave and distraction, my body doesn't always calm down.  Sometimes I am forced to just ride it out until the event, feelings or circumstance that trigger the response pass.  In the meantime, I take even better care of myself with more schedule rest, fewer strenuous activities and more time in quiet, calming surroundings.

Rising to the Challenge

As you can see, chronic illness impacts a person physically, mentally, emotionally, spiritually, socially and financially.

It presents a constant stream of daily challenges.  It keeps me on my toes, pushing me to learn, grown, change and adapt as I do my best to cope. It is the source of my bad pain and fatigue days, many unpleasant feelings and my occasional melancholy.

But I do my best to fight back most days, finding the small comforts and pleasures I can still enjoy that connect me to what life still has to offer me despite chronic illness.

But not today.  Today I'm feeling the yucky stuff so I can get to the happy stuff that is just around the corner.

So does chronic illness mess with your emotions too?  Leave me a comment and share your experiences with me and your fellow readers.


Related articles 

• Vicious Cycle of Fibromyalgia and Emotional Impact: What to Do
• Fibromyalgia Pain & Your Emotions
• Managing Emotions | CFIDS & Fibromyalgia Self-Help
• [PDF] - The Psychology of Chronic Illness

The Girl Behind All That Lemonade

Dale Carnegie said: "When fate hands you lemons, make lemonade."

Sure, there are a bazillion other versions of this quote.  The most memorable one that comes to my mind at the moment is: "When life gives you lemons, hand them back and ask for chocolate instead."

But let's not kid ourselves here: the lemons life sticks us with are not exchangeable or returnable.  Period.

And we might all get them, but certainly not in any sort of equitable distribution.  Which probably accounts for the mountains of them that have shown up on my doorstep so far in my lifetime.

So what do I do with all those lemons?  I have made lemonade of course: lots and lots of delicious lemonade.

I've learned to cope, adapt and change.  I've learned to smile through my pain and hide my tears when life feels more like a punishment than a blessing. To deal with all those lemons, I've transformed myself into the ultimate super trooper.  Heck I've even adopted the motto "Life is not in having and getting, but in being and becoming." (Matthew Arnold)

This is all fine and dandy, but it also begs the question, 'Who is that girl behind all that lemonade?'  I mean, I don't walk around 24/7/365 with moonbeams sparkling in my eyes, rainbows shooting out of my ears and a glass of lemonade in my hand.  I'm not always smiling and putting a on happy face...and some of those lemons do wind up smashed on the kitchen floor (among other places.)

So let me get real.  Here is a peek behind the lemonade stand at three of the more grittier themes that are also a part of my life.

Disappointed

If I am going to be really honest, one the first things I need to admit is that I feel disappointed.  I'm not living the life of my dreams and that is quite a letdown.

At the moment, I've kind of put dreaming on hold because it brings me even more disappointment, and who needs that, right?  I'm strictly living life one day at a time, because it sometimes gets too overwhelming to think about life with chronic illness in bigger chunks that that.

Sure, life disappoints all of us on some level.  But my main concern is that I am not going to be the one things I always wanted to be--a mom.  Between infertility and chronic illness, life really has made this next to impossible (despite all the spam comments to the contrary every time I write about this painful subject.)

I'm at the point where disappointment is turning into regret...

Sad

When you have a lot of bad things happen to you, you can't help but feel the loss, disappointment and unfairness of it all.  It hurts like crazy!  And who wants to have to feel like that, right?

Sure, you can ignore it, distract yourself from it, even try to deny it.  But sooner or later it catches up to you.  Then you must decide if you will allow it to take you down into a black, bottomless abyss or chose to face it, feel it and figure out a way to keep living your life anyway.

When I say I am sad, what I am really feeling is sorrow.  Sorrow is a feeling of deep distress caused by loss, disappointment, or misfortune.  Sorrow has become part of who I am fundamentally.  It's all those scars while I've been living my life anyway.

By the way, just because sorrow is a part of my life doesn't mean I don't also feel joy too. In fact, philosophically speaking, one might say that to experience true joy one must also experience sorrow.  Either way, being sad is not the same as being clinically depressed, which by definition means you can't feel joy.

So don't send me referrals to shrinks or leave me recommendations for antidepressant medications.  Well, at least not yet... 

Unfulfilled

I haven't worked in seven years and, wow, that is a really long time.  Boy do I miss it too.

When I was working I felt like I was on a path filled with accomplishments.  I had a career mission, complete with all kinds of objectives and goals.  I was getting things done every day, week, month and year and I had something that was tangible proof of it too: my resume. 

In the last seven years I really don't feel like I have accomplished much.  Sure, I have been taking care of myself day in and day out.  I've developed some expertise in the self-help techniques I use to do just that too.  But it's been an exercise in repeating the same goals and objectives over and over again.  Sounds pretty boring to me.  Plus I'd be hard pressed to create a resume with that kind of experience.

Most of all, I feel like I am floundering.  Or maybe it's more accurate to say I currently feel like I'm squandering my time here on Earth.  I mean, I believe that we all have some kind of purpose here and I am definitely feeling like my mission has run into some serious health-related roadblocks that are preventing me from fulfilling mine, whatever exactly that is.

Which leads me to my next point--I'm not sure what my purpose is anymore.  Or perhaps I just haven't been able to figure it out because I have been so darn busy just trying to take care of myself.  Talk about the daily grind...

Some Final Thoughts

Another truth is that I have been living with serious illness and its aftermath since 1988.  That's 23 years.  That's a lot of time...

Some of this time was spent sitting in therapists' offices talking (and talking and talking) about all the crap that has happened to me.  I've had a lot of time to process these issues.  Along the way I have been in denial, angry, freaked out, livid, heartbroken, anxiety-ridden, enraged, devastated and, yes, even clinically depressed. 

Yes, I've had a lot of time to get down to the root of what bothers me the most and I think that disappointment, sadness and feeling unfulfilled pretty much sum it up.  They also, ironically, are the things that motivate me to keep moving on.  I haven't given up yet on creating a life that resembles some of my reality-tempered aspirations, contains a balance of joys and sorrows and helps me discover my true purpose and ways to fulfill it. 

Funny how life works, isn't it?

Question of the Week: Dealing with Disappointment?

When I'm feeling down by inspira

Life is full of disappointments: the date who didn't call, the job we didn't get, the perfect apartment that just got rented to someone else.  Sooner or later, we all learn to cope with these setbacks and heartbreaks in life.  We pick ourselves up, dust ourselves off and keep moving forward like everyone else does.


But what do you do when your biggest disappointment in life is your chronic illness?

Clearly this is something you can't just brush off and hope to move on to something more pleasant.  Plus being chronically ill doesn't just disappoint you; it often results in the people around you feeling disappointed too.  Chronic illnesses can consistently prevent us from fulfilling our expectations and wishes, not to mention the expectations and wishes of those around us!

I got a reminder of this Friday night.  Robert and I got into a fight about doing the dishes, only it had nothing to do with the dishes.  It was yet another catalyst for Robert getting in touch with his feelings about his disappointments with me.

You see, if I was healthy and not working, it would be reasonable for me to take charge of the household and be a domestic goddess.  I'd be cooking, cleaning and running errands while he was at work.  It would be a fair and equitable split of the housework responsibilities.

Instead I am home all day and not able to get much done.

I know he is often tired when he gets home from work and the last thing he wants to do is chores around the house.  I'm doing the best I can to get as much done as possible, but that pales in comparison to what I used to be able to do.  The ideal solution here is to hire help, but with me not being able to work and my disability income just a small fraction of what I used to make, it isn't a affordable solution right now.

So we had a fight about the dishes piled up in the sink--which was really about my inability to meet his expectations being that I am home all day with plenty of time on my hands.  It's too bad too.  I'd really like to use my hands and the rest of my achy body to get things done, but that is besides the point.

He needs to figure out how to come to an acceptance of my circumstances, which for him has been a long and slow process.  Long and slow because he doesn't walk in my shoes.  Long and slow because he sees a wife that doesn't really look sick on the outside. It's a big change for him, there is no denying it. As much as I hate fighting, I see how it serves a purpose and moves his process along.


In some respects, being the sick one seems to make it easier to accept the changes.  Although I still often feel this way:

"Inside every sick person is a well person wondering what the hell happened."
~Anonymous

In the end, the dishes got done.  After a few hours, things cooled off and we moved on.  The weekend ended on a pleasant note with us having some fun putting up our outdoor Halloween decorations.

I don't know if I really have the answer to dealing with the disappointments resulting from a life with chronic illness.  I personally have taken the "grin and bear it" approach.  When it comes to the other people in my life, I find myself reminding them, "This is the way things are.  I'm sorry and I am doing the best I can given the situation."

So what do you think?  How do you deal with disappointment, both your own and that of the people around you? Do you think disappointment is just a part of living with chronic illness or is it a pit-stop on the way to acceptance?

Leave me a comment here or over at the Oh My Aches and Pains! Facebook page so we can discuss this topic further.

Wordless Wednesday: So Emotional

Transforming Myself Into Ms. Fibro-Friendly

Image by Loving Earth via Flickr
Hello, my name is Ms. Fibro-Friendly and I am the queen of the workaround.

What is a workaround you ask?

Why it is figuring out how to do something in a new and novel way that respects both the limits my chronic illnesses impose and my desires to get things done.

If you have visited my blog before, you know that I have written about this topic many times. Some of the posts on this topic include:

• My Favorite Fibromyalgia Coping Strategy
• Can I Make Driving More Fibro-friendly?
• My Routine: Tools that Help Me Stay in My Energy Envelope
• My Routine: Spending Time in the Garden
• What Works: Focusing on Lifestyle Physical Activities
  

The untold story here is the mental and emotional workarounds I needed to figure out to get myself to a place where I wanted to be Ms. Fibro-Friendly. Quite frankly, it's been a arduous journey to get to here:

• First, I changed my thinking about my illnesses, from seeing them as short-term problems to solve to accepting that they are long-term fixtures in my life.
• I started processing lots of emotions: anger, frustration, sadness, despair, doubt, self-pity, resignation and acceptance--not necessarily in that order.
  
• Then I learned to stop comparing my current self with my past self, thus reducing the number of not nice things I said to myself on a daily basis.
  
• After that, I bolstered my self-esteem to defend myself from comments, spoken and unspoken, by the nay-sayers, the fixers, the critics and the ones that just disappeared.
• Finally, I realized I couldn't just keep waiting until I got better to start living again, so I embarked on a mission to live my life as best as I could despite my chronic illnesses.
  

Even with all this progress, there are still beastly days that make it almost impossible to hold onto my new-found identity as Ms. Fibro-Friendly. That's when I pull the big guns out:

• When faced with something that seems impossible, I say to myself," I can do this, I just have to figure out how."
• When totally overwhelmed, I pray, "Dear God, please help."
• When caught up in a whirlwind of problems or emotions, I remind myself, "This too shall pass."
• When disappointed and frustrated by how little I was able to accomplish today, I remember that, "Tomorrow is another day."
• When I feel like cursing my fate over the size of my challenges, I repeat this quote: “God knows the age of every tree and the color of every flower. He knows just how wide your shoulders are and he'll never give you anything to carry that's bigger than you can handle."
  

Like I said, it's been a bumpy road with lots of challenges and small setbacks. But the more I practice mastering the workaround, physically, mentally and emotionally, the easier it becomes to carry my load.

And I think I'm getting so good at it that when adversity strikes, I just concentrate on growing bigger shoulders!

October 2010: Welcome to the Big Time

Image via Wikipedia
So, wow, it's November October already. That last sentence was a huge Freudian slip on my part. I understand why--I just finished looking at my calendar for this new month.

Yup, I'm pretty sure I can't wait until this month is over.

You see, I have doctors' appointments every week this month of October. Which, by the way, is a pretty doable schedule, especially since I will have Robert's help for each appointment. If they were all routine follow-ups, I'd say, 'No big deal.' Except the first two appointments this month are a big deal.

Week One

On Friday, October 8th I have my first routine colonoscopy. I am starting early because my mother died at age 61 from metastatic colon cancer. She had her first colonoscopy at 50 and everything was fine. Then she somehow she never made it back for another one at age 55...

I'll never forget April 13, 1998. It was the day after Easter and a month and a half before my wedding. Robert and I spent the previous day at my parents' home enjoying Easter dinner. She called early the next morning with abdominal pain, needing a ride to an Urgent Care appointment.

After spending several hours in the clinic, they transferred her to the Emergency room. It was there that a scan was performed and the truth revealed. At age 60, she had a large tumor in her colon that had spread to her liver. During surgery the next day, the surgeons discovered so many tumors on her liver that they only counted the largest ones. With stage 4 cancer, her prognosis was not good. She died 11 months later.

Despite my anxiety and fears about this procedure, I am determined not to let this happen to me. It's all about prevention!

Week Two

I'm going down to Orange, California on Thursday, October 14th. My destination is very close to Disneyland, but I won't be visiting Mickey Mouse. Instead, I'm getting some medical tests which might just be the medical equivalent of a roller coaster ride.

I'm visiting the University of California, Irvine Neurology clinic for a consultation in the morning regarding my dysautonomia. Then I am having autonomic testing done in the afternoon (aka the roller coaster ride.) I anticipate that this may include a tilt table test and whatever else they do to diagnose dysautonomia.

The outcome I hope for is better treatment of my dysautonomia symptoms from a doctor who is a true expert in the field.

(Why they don't have a clinic like this at UCLA, I'll never know...)

The Hard Parts

I don't like be sedated, so that part of the colonoscopy for me is anxiety-provoking. Since I have sleep apnea, I'm also concerned about what precautions the medical staff will take to ensure this doesn't complicate things. The prep for the colonoscopy seems like no fun at all and I am worried it will make me physically sick.

My biggest fear about the autonomic testing is passing out. (Yeah, I really don't like being unconscious.) I am also realistically worried that the testing will flare me up. Plus chances are I am going to be somewhat sleep deprived that day because of the time of the appointment, which will already make me more symptomatic.

Most of all, the hardest part for me about the next two weeks is overcoming my fears about the unknown.

Plan of Attack

Being a former Girl Scout, I'm taking the motto Be Prepared very seriously. So for the next two weeks, I am going to talk about how I face my fears, get ready and get through these medical appointments and procedures. Which means you can look forward to posts with lots of ideas you can try to help you cope with big time medical appointments too.

I am also going to ask you, my readers, to share your tips and tricks with me too. Comments showing your support and encouragement will be greatly appreciated too.

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My Advice: Habits for Gaining Emotional Balance

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Yesterday, some friends asked me to share some of my tips and tricks for getting more emotionally balanced. I'm glad they asked me because I believe that the best way to reinforce knowledge is to turn around and share it with someone else. I felt so inspired helping my friends out that I decided I needed to turn my advice into a blog post that could benefit all my readers. So here they are, my habits for gaining emotional balance:

1. Understand the nature of emotions. We all want to be happy, which is our home base. But just like the weather changes from day to day, from hot to cold, from sunny to cloudy, so too do our feelings. The key here is knowing that difficult emotions will pass, just like rain clouds do across the sky. Just because you feel bad today doesn't mean you will feel bad tomorrow. So go with the flow, feel your feelings and then watch them fade away.
   
   That said, if you find yourself stuck feeling the same emotion day after day, can't feel anything at all or find your feelings rapidly changing over the course of a day, it might be time to see your doctor or talk to a mental health professional.
   
2. Breathe. Breathing isn't something we have to think about doing, but have you ever noticed how your breathing changes when you feel stressed, upset or anxious? Focusing on taking a couple of full, deep breaths can often help you calm down and get focused.
   
   You can train yourself to make this second nature. When ever a phone, door bell or electronic device rings, buzzes or makes a sound, use the sound as a cue to remind yourself to breathe deeply.
   
3. Have a mantra. Before I knew I had dysautonomia, I often had episodes where I all of a sudden didn't feel well. It was easy to get worked up and start thinking the worst about my situation, but this didn't help me cope very well. So one day I decided to repeat this phrase to myself whenever I had an episode: 'I am good, I am fine, I'm O.K.' With practice, this mantra helped get a handle on my symptoms and not let them reduce me to a quivering, helpless mess.
   
4. Choose a theme song. Nothing seems to cheer me up more than listening to my favorite music. So I took that concept one step further and decided that my life needed a theme song--a song that could pick me up, keep me motivated and remind me of what I am trying to get out of life. Click play below to hear my all-time favorite theme song...
   Could You Be Loved? – Bob Marley and the Wailers

Have fun every day. I devoted a whole post to this concept recently which you can find right here. Of all my daily strategies, I think having fun every day is the most important one. I believe that having fun makes life worth living, especially on those supercalifragilisticexpialidociously bad days.

Share your life with a pet. I honestly believe that pets are the only true source of unconditional love. All they want is your love and attention and in exchange they shower you with all the love and attention you could ever want. Can't have a pet where you live? Consider volunteering at your local animal shelter or befriending your neighbor's dog or cat.

Keep a daily path to happiness journal. Many people swear by the power of a gratitude journal, but I think I have found an even better way to get focused on the important things in life. At the beginning of every day, I write down what I want and my mantra for the day. At the end of each day, I write down the best highlight from my day.

So for example: I want to be a successful blogger. My mantra is Enjoy each moment. I enjoyed a good conversation with my husband during dinner.

All it takes is three sentences a day to keep me focused on my goals, in touch with sacred counsel and grateful for the good things in my life.

So what are the things that help you gain balance, perspective and focus in your life? Teach me something new by sharing your tips and tricks in a comment.

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Chronic Illness: It Sucks ... And I Deal With It

What advice would I give to someone new to living with chronic illness?

There are so many things I do to cope with my own chronic illnesses, I could probably write a self help book (or several.) But as I contemplate this question, I recognize that what works for me may not work for someone else. Plus, giving advice ignores the fact that today is the result of my numerous experiments, trying out many different strategies to get to the ones that work for me.

Which got me thinking that maybe the best thing to share with someone new to chronic illness might not advice, but my approach.

So here is my guiding philosophy--> Chronic Illness: It Sucks ... and I Deal With It.

It Sucks

A lot of people comment about how positive I am in dealing with my multiple chronic illnesses and ask me how I do it. Here is my secret: I feel all my feelings--the easy ones, the hard ones, the pleasant ones and the crappy ones. I have found that the only way I can tap into living my best life with chronic illness is to be in touch with all my feelings.

I say embrace the suck and all the other feelings that come your way. Don't fight them and don't stuff them. The surprising part is that once felt, feelings don't last very long. Feeling your feelings lets them pass through and dissipate, so they don't control you or make your life miserable.

This is a lesson I learned the hard way.

When I was diagnosed with cancer at age 22, everyone around me started talking to me having a positive attitude. It was like having a positive attitude was the only thing that was going to cure my cancer. So I pushed all my other emotions down and didn't deal with them in the moment. But that didn't mean they went away. In fact, a few years later, I started having problems with depression. I learned that I missed out on dealing with some aspects of my cancer experience because I avoided my feelings.

Feeling your feelings helps you get to the next the next step ... acceptance.

... I Deal With It

Chronic illness sucks, but what I am going to do about it? I can't wish it away, I can't make it go away and I certainly don't want my life to suck. So after I took some time to feel my feelings and process them, I asked myself what I wanted my life to look like, even if chronic illness was going to be a part of it.

This is how my quest to live my best life despite chronic illness was born.

Yeah, it wasn't a path I chose, but this isn't the first time a monkey wrench had been thrown into my plans. I've learned to embrace this new path and start searching for new things I could do and new directions I wanted to go. I've tapped into the girl who likes a challenge, enjoys taking risks and rises to the occasion. I found a way despite the suck to get motivated and get moving towards the life I want.

So if you are new to chronic illness, I'm sorry. It really does suck, but I am sure you can find a way to deal with it too. Let me know if you need my help ... leave me a comment or send me an email.

P.S. I've discovered that when I am having problems dealing with it, it usually means I need to spend some time going back to feeling the suck. It's a process: two steps forward and one step back. I just keep feeling the suck ... and dealing with it.

Learning to Have a Mature Relationship with My Mother

Image via Wikipedia

So if you have been reading along this week, so far I have told you about my siblings who choose not to talk to me and our mother who promoted discord and unstable relationships among the four of us growing up. I've talked about how, on my mother's side of the family, there is a multi-generational history of emotional cutoff. Then I admitted that, without the cooperation of my siblings, I am unable to stop this cycle from continuing.

So today I'm going to talk about how I grew up and learned to have a mature relationship with my mother BEFORE she died. That's right, I figured out a way to interact with her that didn't leave me depleted, angry or feeling like she had taken advantage of me. I actually was able to successfully interact with her AND feel good about it.

How did I do this?

It started in 1995 when I took a vacation from my family for a year and a half. I flat out told my mother that I needed to figure some things out for myself and didn't want to talk to her for a while. I didn't change my number or my address so my parents knew how to get a hold of me, but I also didn't encourage my mother to contact me "if there was an emergency" because she clearly didn't understand what the word emergency meant.

I spent that time getting to know myself and who I was. I looked at the mythology my family created about who I was and decided I wasn't buying into it any more. For example, my mother frequently said I was selfish and self-centered and, after careful consideration, I decided that wasn't an accurate description of myself. I went through every aspect of the mythical Selena, compared them to the real Selena and came to the conclusion that my family just didn't understand me.

Rather than be angry or upset, I decided to just try to accept this as fact. After all, up to that point, I had spent 30 years trying to demonstrate that they had it all wrong, trying to get them to see the real me. I gave up on seeking my family's validation and approval. I embraced the fact that I was an adult and could do whatever I wanted to do and it didn't matter what my family thought or how they judged me.

I also recognized that many of my family's judgments, criticisms and rejections were steeped in emotionality. So I decided that I was going to try and avoid getting caught up in the emotional tornado of bitterness, unhappiness, shame, hysteria and anxiety that swirled around my family. I worked on adopting a calm, cool and collected stance so my thinking and behavior could be rooted in a careful consideration of the facts.

Then came the big test.

December 1996 I got a Christmas card from one of my sisters saying "Dad really needs us now." So I went to go visit him when my mother was at work and immediately could tell he displayed cognitive deficits indicative of Alzheimer's disease. I decided my vacation was over and I needed to be involved with my parents once again. But instead of allowing myself to get sucked back into old patterns of behavior, I started setting limits with my mother.

In the past, my mother sought me out when she wanted me to do something for her. So I started by reminding myself that this was HER husband and it was HER responsibility to care for him, even though this was my dad and my heart yearned to take care of him myself. This time, I gave her the information and referrals she needed so she could take care of HER husband HERSELF. I would support her and my dad, but I wasn't solving this situation for her.

I worked on not letting her hurt my feelings when she said something objectionable. I worked on being open-minded when she spoke, listening instead of formulating a comeback to her opinions. I worked on controlling my temper. I worked on being clear about my limits and what I was and wasn't willing to do. I worked on being compassionate, not critical of my mother. I worked on accepting that I couldn't change her thoughts, feelings or actions, only my own.

It's amazing how other people respond when you change.

It wasn't all that I wanted or hoped for, but we somehow were able to get along better. I made choices about what I was going to do and didn't succumb to pressure to do more. I acted thoughtfully, in the best interest of myself, my husband and my parents (in that order.) I sidestepped the emotional tornado and didn't get caught up in the panic, fear, hostility or guilt. I could disagree with her and it just wasn't a big deal anymore. I focused on just being ME, without worrying about having to justify or defend myself.

When my mother was diagnosed with colon cancer a month before my wedding in 1998, I didn't postpone our plans. I did everything I could to be there for her during her illness and took care of my dad when she was gone. We never truly resolved our differences before she died, but I did go and say goodbye to her. I don't have any regrets. I am confident I did everything a good daughter would have done to help their dying mother, which in turn gives me peace of mind as I move forward with my life.

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• History Repeating Itself (ohmyachesandpains.info)

The Real Truth About Me

Image by KaitlynKalon via Flickr

Yesterday got me in touch with some truths about myself that I hadn't experienced in a while.

Day-to-day, I try to convey information in an optimistic tone on my blog, sharing my discoveries, coping strategies and words of encouragement. Yesterday I wondered if sometimes I avoid talking about how much of a struggle life with chronic illness really is and how chronic illness evokes a wide range of emotions in me. You see, I have started reading some new blogs and following some new people on Twitter who don't hold back and tell it like it is for them, so I began to wonder if I need to be more real and talk about ALL my feelings too.

So I want to set the record straight.

For me, living with chronic illness seems to be about adjusting to lots of grief and loss. As a result, I feel a lot of different things about living with chronic illness. Elisabeth Kubler Ross' five stages of grief pretty accurately describe the experience: denial, anger, bargaining, sadness and acceptance. As life would have it, just when I think I have finished adjusting, something new pops up and I go through the whole cycle, again and again. So that would be denial, anger, bargaining, sadness, acceptance, repeat, denial, anger, bargaining, sadness, acceptance, repeat...

My feelings of grief and loss can be triggered by many things:

• disillusionment when a new treatment option doesn't bring the relief promised
• unfair comparisons to healthy people that leave me feeling less than
• dissatisfaction about where I am in my life versus where I want to be and where I dreamed I would be
• reminders that I am not living up to other people's expectations of me
• overt and covert accusations that I can't have THAT much pain, fatigue and impairment
• frustration about not getting the help I need from family and friends to do every day, ordinary things
• annoyance at my limits and limitations
• disappointment when those around me experience temporary lapses in caring and act as if they have forgotten that I struggle with chronic illness 24 hours a day, 7 days a week, 365 days a year

Most of all, I am keenly aware that I am not a normal, healthy person. I admit that I don't travel well, I can't keep up, I say no a lot, I cancel plans, I make a lot of requests, I require many accommodations and I am, in general, very high maintenance. In short, I make a lousy friend! I realize that the way I am is not at all ideal, which is why I overcompensate by trying to be easy going, like keeping my mouth shut and putting up with a lot of guff from people rather than getting into it with them.

But then yesterday I started to question if this is really the best approach FOR ME. 'Maybe I just need to stop being so inhibited and start being more myself,' I thought. I pondered whether assuming the role of Ms. Fibro-friendly really sends the right message. Does presenting an image of myself as coping "so well" send a mixed message?

"She says she has a lot of pain and fatigue but then she seems to be doing, saying, going out, living and smiling."

It seems living my best life with chronic illness may be fraught with some contradictions.

To Be Continued.....

Openhearted: The Best Way to Be

Image by qthomasbower via Flickr

Yesterday I went with my husband to his eye doctor appointment. He goes twice a year and on this visit he got his eyes dilated, so he asked me to drive him home. While waiting for him in the lobby, I got a chance to read a free e-book I downloaded from the Institute of Heart Math's website, De-Stress Kit for the Changing Times. As I read the paper, I suddenly realized that being openhearted has saved me from a life of anxiety, blame, anger, gloom and doom, grief and emotional pain.

I should start by defining what I mean be openhearted, as what I am referring to goes beyond the Merriam Webster definition of:

1: candidly straightforward: frank
2: responsive to emotional appeal

I now define an openhearted person as someone who genuinely cares about other people, knows how to communicate feelings to them, can offer others emotional support and demonstrates kindness and compassion through their thoughts, feelings and actions. Being openhearted means tapping into the social connectedness that lies at the core of the human experience and recognizing that it is through genuine feelings of appreciation for other people that we derive our strength, balance and stability. When I practice openheartedness, I can come to a place where I can let go of the things that trouble me and open myself up to what Doc Childre calls a "psychological turnaround."

Attending a support group with others in a similar situation as your own, expressing your feelings, listening and support others and sharing a laugh or a good cry is a powerful example of this concept in action. It just so happens that I learned to be openhearted through the young adult cancer support group I attended in the Fall of 1988. Yet it wasn't until today that I truly grasped the overwhelming significance of this experience as I applied what I was reading to myself and my family of origin.

You see, I grew up with a mother who was all about the drama. She kept me and my siblings spinning like tops so as to keep us all off balance. She played the blame game and stoked the flames of anger between us. She only focused on the downside of every situation and infected us with her predictions of gloom and doom. Her approach to life left me feeling stressed out, out of balance, fearful and drained and I imagine that my three younger siblings felt the same way too.

I sadly know that this upbringing spawned the fractured and non-existent relationships I have with my siblings today. I often feel badly about the state of affairs between myself and my siblings, but I understand after reading this article why things are this way. I find myself thankful that cancer came into my life and put me on a path that taught me a healthier way to deal with the stresses, upheavals and anxieties in my life. Dare I go as far as to say that cancer saved me from going through life as an anxious, miserable and hardhearted person?

Yes, I learned from my cancer experience that being openhearted is the best way to be. And yes, it feels weird to be grateful that I had cancer.



What lessons have you learned from your chronic illness(es)? I'd love to hear what you have to say, so please share by clicking Add Your Comment.

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Be Here Now: Unclogging the Drain

I am not paranoid, I swear, yet sometime I think our house is conspiring against us. Lately it's been problems with the plumbing, more specifically the drains. First the kitchen sink drain backed up. After drain cleaner, plunging and swearing, we called the plumber, paid $60 and the problem was temporarily fixed. Now, several weeks later, it's the bathroom sink. We again have tried drain cleaner and plunging with no success. I guess it's time to call the plumber again.

Our house was built in 1949. I guess a lot of things have changed since then, including what materials are now used for plumbing. After I bought the house in 1994, I paid to have the incoming water pipes re-piped from galvanized steel to copper. Now the plumber tells me that the drain pipes need to be replaced too. I guess they are made from the same material, galvanized steel, which rusts and can leak over time. A quick Google search tells me that PVC is now the pipe of choice for drains.

Image by timballas via Flickr

With a house that is sixty years old, repairs probably should be a surprise. I just question the timing. More often than not, house problems rear their ugly heads when we least expect them, when they are the most inconvenient and when we can least afford them.

I wish my house understood that I do want to upgrade it and make everything work better. If Robert and I were still DINKs--dual income, no kids--this might have been accomplished by now. But since I am disabled and my income is now Social Security Disability, reaching this goal is much harder to attain.

Funny how a clogged drain has gotten me in touch with the crappier aspects of living with chronic illness today.

I'm not so much feeling sorry for myself as acknowledging that sometimes reality bites. Make no mistake, if I could chose, I would not chose a life with chronic, disabling illnesses. I much preferred my previous life as an independent, self-sufficient, get-things-done career woman. Anyone who thinks otherwise of me just doesn't understand how chronic illness has completely changed my life.

Wish me luck getting the drain unclogged. As for my feelings, well, tomorrow is another day. Just because I feel this way today doesn't mean I'll wake up feeling this way tomorrow. I know that allowing myself to experience my feelings ensures my emotional drain doesn't get clogged.