Is Chronic Illness Making It Hard for You to Believe In Yourself?

Welcome to another Question of the Week.

Several people in my social circles have been writing and talking about self esteem lately.  The conversations have run the gamut, from "I admit I care about what other people think of me." to "If I can do it, you can. I believe this with all of my heart."

What I have taken away from these conversations is a renewed appreciation for my ability to believe in myself.  Let me explain...

Chronic Illness Can Take a Toll...

I think chronic illness can take a real toll on your sense of self.

I admit there have been plenty of times where I have doubted my judgement, my view of reality and my self-worth when faced with all the baggage that comes with a life filled with ongoing health problems. Those moments have often come after a difficult encounter with another person, like a less-than-helpful medical professional or an uneducated healthy person, who has just questioned whether I am truly ill and/or in need of treatment.

I just don't get why these folks need to make it hard for me for no apparent reason. 

Then there are those moments when the loved ones around me spew out that stray hurtful remark or judgmental comment about my chronic life.  It's those moments that can slap me right in the face and send me reeling.  I'm always discouraged by how I can suddenly feel all alone in my struggles, like no one understands or can support me.

...But It Can Also Change Your Perspective

I love how my friend who cares about other people's opinions also said, "I may not let it hurt me, or change my course- and certain people's opinion of me is insignificant- but, in general, of course, I care."  As her peer, I appreciate the maturity and wisdom in that statement.  I too feel the same way: I care about my interactions with other people, but I also choose if I let someone else's opinion of me hurt me, change my mind or hold any weight.

Then I realized that living with chronic illness for the last 7 1/2 years has helped me believe in myself more.  I've achieved this by learning to take better care of myself by unselfishly putting myself first.  Most of the time I don't let what others say or do ruin my day or my mood, because that kind of stress isn't good for me, my chronic illnesses or my efforts to manage them.

When it comes right down to it, what I think, feel and believe are the most important things to me.  Period.

So What Do You Think?

Is chronic illness making it hard for you to believe in yourself?  What specific situations or people make it difficult for you? What do you think you'll need to do to turn this around? How can I help make that happen for you too?

Please share both your struggles and successes in this area by leaving a comment here or over at the Oh My Aches and Pains! Facebook page.

Wondering What the New Year Holds in Store for You?

Welcome to another Question of the Week.

A new year seems like a pretty good time to contemplate what is going to happen over the next 366 days (err, make that 363.)

Let's face it; we all want good things to happen to us.  I know for a fact that some good things will happen in 2012.  I also know some not-so-good things will happen too.  But I chose to focus on the good things because it's the good things in life that help me get through the not-so-pleasant stuff that shows up uninvited on my doorstep.  

But if you are thinking about the new year and saying to yourself, 'It's just going to be the same thing, day-in and day-out, like it was last year.' well, that's not going to fly with me.  If you don't think anything good will happen to you this year, I'm going to challenge you to think otherwise.

Yes, there are things we can control and things we cannot control.  And it sure seems like it's the unpleasant circumstances not within our control that grab hold of our attention and won't let go.  It is all too easy to get demoralized, depressed and worn down by the stuff we can't do a darn thing about.  I completely understand if this is where you are at, because I have been there too and it sucks.

Here is the thing.  If you spend your time trying to fix the things that are unfixable, you are going to be a very unhappy camper.  On the other hand, if you switch your focus onto the things you can control, you will start to feeling better about yourself and your life.  Nothing is more empowering than reclaiming your potential and doing everything you can do to better your situation in life in spite of your health problems. I promise!

To get you started, let's assume for a moment that the Mayan prophecy is true and the world is going to come to an end on December 21, 2012.  If you truly believed this, what would you want to do between now and then?  Hint, hint!  Maybe it's that something fun and life-affirming you've been holding off on because you have been waiting until your feel better...

Me?  I want to go on a vacation with my husband, somewhere pleasurable, where we can take a leave of absence from the daily grind and just enjoy ourselves and each other.  A couple of places come to mind as I think about this, but the one place I know we can both agreed upon is Las Vegas.

Now because I live with multiple chronic illnesses, going on vacation takes a lot of planning and preparation.  I start with a Special Event worksheet.  It helps me start thinking about all the extra things I need to do before, during and after any event that will ensure I can participate without causing a huge flare-up of my symptoms. It also gets me thinking about modifying how I do things given my health challenges.

Chronic illness does impose limits and restrictions on how I do things, but it can't stop me from doing the things I want to do.  It is a lot of work, but it is so worth it when I am able to do something fun AND really enjoy it despite my chronic illnesses.  Plus having something fun to look forward to really helps get me through the sucky stuff in my life.

So what about you?  What does the new year hold in store for you?  What can you take charge of in your life that will help you feel better about yourself and your life?  What is something fun and life-affirming that would bring you more laughter and joy in 2012?

I'd love to hear from you, even if you are struggling with this challenge.  Perhaps, together, we can engage in some problem-solving and come up with a plan of action that lets you do something you didn't think possible because of your chronic illness.  So please leave a comment here or over at the OMA&P! Facebook page.

If you are really stuck, feel free to contact me via email.  I'd love to take this conversation further if you are willing to be featured in a future post here at OMA&P!.

What Is Working and What Is Not

Today I wanted to talk about some emerging challenges with my self-care routine and the steps I am taking to address these new issues.

Sleep Apnea

What's not working: I have been using a nasal pillow mask for several years now. During that time, I've been dealing with a lot of nasal discomfort, with the most troublesome symptom being increased nasal stuffiness. My primary care doctor recommended I use a prescription nasal steroid spray to combat this problem. Unfortunately, my endocrinologist thinks the nasal steroid is mimicking the symptoms of a hormonal problem and has asked me to stop using spray.

What is working: I decided it was time to go back to the drawing board and check out different CPAP mask configurations to see if switching to a different type of mask could solve the problems I was having a nasal stuffiness. After doing some research I decided to give the Sleepweaver soft fabric nasal CPAP mask a try. The new mask allows the air from my CPAP machine to surround my nose rather than be blown up inside of it. This seems to be making a difference, as the problems I've been having with nasal stuffiness seem to be resolving.

The bottom line: If you are a CPAP user like me, it pays to keep on top of new developments in CPAP technology. Every year, I find new and innovative products that are helping me minimize or eliminate many of the small annoyances that come with being a regular CPAP user.

Dysautonomia

What's not working: I've been trying to implement the recommendation from my doctor at the Mayo Clinic to include more electrolyte beverages into my daily routine. Electrolytes help me better maintain my fluid balance, which is a problem when you live with postural orthostatic tachycardia syndrome (POTS) like me. Unfortunately, most electrolyte drinks contain sugar. Since I'm diabetic, I generally avoid sugary drinks because they present a signification challenge to my blood sugar management.

What is working: I've been searching for several months now, looking for an electrolyte drink that is sugar-free. I recently discovered Ultima Replenisher, a balanced electrolyte drink that is sugar-free and recommended by the Dana-Farber Cancer Institute for their patients. I purchased the lemonade flavor a few weeks ago and really liked the taste. I'll be ordering the orange flavor from Amazon.com in the next week to give that a try.

The bottom line: What can I say? Persistence often pays off.

Type 2 Diabetes

What's not working: Unfortunately for me, my blood sugar levels appear to be on the rise once again. I can honestly say I have not made any significant changes to my diabetes self-care routine, so my best guess is that the rise in my blood sugar has something to do with my Hepatitis C viral load. I've noticed in the past that when my viral load increases I have more difficulty controlling my diabetes.

I just had blood drawn a week ago. I will be getting those test results soon and I anticipate that they will confirm my suspicion.

What is working: In the meantime, I've needed to get more diligent with my diabetes self-care. I am double checking to make sure that my meals are balanced between carbohydrates, protein and fat. I am also making sure I include more high fiber carbohydrate choices, like whole grain bread and pasta, beans, whole fruit and starchy vegetables, and fewer simple carbohydrates choices, like products made with refined white flour and sugar.

I've also discussed my concerns with my endocrinologist and she has suggested increasing my dosage of Victoza.

The bottom line: This isn't the first time this has happened. And each time it happens, it gets me thinking that it might be time to start thinking about treating my Hepatitis C. So when I see my hepatologist for a follow-up appointment at the end of June I'll be talking with him about hepatitis C treatments once again.

As you can see from this discussion, managing my chronic illnesses is an ongoing process with an ever-changing target that requires me to be resourceful, flexible, persistent and engaged. It's a lot of work, but it's a very necessary part of my life. After all, no one is in a better position to take care of me than I am. Too bad it's not a job that doesn't pay better.

The bottom line is I know I'm doing a good job when I continue to be able to live my best life despite all my health challenges.

Fibromyalgia Flare-up? Here's What To Do...

Ever watch a movie or TV show where the crew of a ship detects an enemy? What does the captain do next? Why, the captain orders the crew into battle stations and sounds a red alert.

Well, at the first sign of a flare-up, I go into my own red alert mode.

For me, that means doing things like:

• canceling trips outside the home for appointments, engagements and events
• cutting back on all physical activities--chores, driving, shopping, arts & crafts
• scheduling lots and lots of extra rest and sleep
• pulling out medications and self-care items to combat increased symptoms: pain medications and patches, muscle rubs, ice packs, heating pads
• delegating tasks and asking for extra help from my support system
• increasing the use of pleasant distractions, like music, movies and TV shows
• engaging in a lot of soothing and encouraging self-talk, i.e. 'You can get through this.' 'With some extra rest, you will be O.K.' 'Just take this one day at a time...'

How long I need to do these things depends of course on how intense and severe my flare-up is. Early on, my flare-ups from overdoing things were pretty epic, requiring a few weeks to overcome. My absolute worse flare-up, after my failed attempt at Hepatitis C treatment back in 2007, took about 3 months of post-flare recovery time.

I developed my personal flare-up response plan over time. It became a real priority after I learned the hard way that ignoring a flare-up and continuing to push myself had big, bad consequences--like a 7 day migraine headache that required a trip to the Emergency Room. (By the way, like knee pain, migraines are a symptom I only get when I am flared up.)

To put things into perspective, having a flare-up plan isn't just another burden and bother of living with fibromyalgia. I've come to see it as an important self-management tool, one that people living with other chronic illnesses use too. For example, people with diabetes develop a sick day plan to deal with the high blood sugar that comes with having a cold, flu or stomach bug.

Getting a heads up when I am heading into a flare-up is one of the benefits I found to tracking my symptoms and their severity. So now, if I see that my symptoms are getting worse, I can cut back and rest up right away. I've discovered that an early response to a flare-up 1) prevents the flare-up from getting worse and 2) help me recover and get back to my "normal" chronically ill self sooner.

In addition to taking steps to recover and calm my body down, I also take some time to figure out the cause behind my flare up. I do this to learn what factors contribute to my flares, some of which I shared with you yesterday in the section So what causes flare-ups? My goal is to learn what factors are under my control and then take steps to prevent these things from flaring me up again.

This is not always as easy as it sounds, both in finding the culprits and figuring out how to combat them.

For example, I recently flared-up and found myself scratching my head. I know I hadn't overdone it and the weather wasn't the culprit. Turns out, a few days later I came down with a cold. It seems the cold virus started a flare-up several days before cold symptoms appeared.

I can't always prevent myself from getting sick, so this is one flare-up culprit I need to accept as being out of my control.

Tomorrow I am going to talk about how I learned to stop the push/crash flare-up cycle and move towards living life inside my energy envelope. Plus I want to share with you my current goal of finding to the "sweet spot," my term for living well with chronic illness while also storing energy for healing.