But she won’t do anything that would cost money or wear her down even more physically.   She’s too afraid to look for a job.

Because she’s been reading my posts for years, she suggested I write about her story.

By her own admission, she’s swimming in guilt about what her job loss is doing to her family.  Especially since she’d been out of work for 3 years grappling with a debilitating pain condition.  She wrote, “ I’m a burden on my husband and kids.  I desperately want to find another  job but I can’t bring myself to do anything about it.  I’m afraid to fail.”

I get it.  I know healthy people who feel this way when they lose a job.   But for so many reasons, the  ’guilt’  from losing a job is a particularly heavy load to carry  when compounded with debilitating illness.

It’s not always true that doing something is  better than doing nothing.  But how can do nothing help here?  And just wanting isn’t enough even if it’s easy: “I want a job”.  Setting intention is harder: “I’m going to try to make this happen“.  Taking action is  risky and brave:  ”I’m going to commit my resources, time, money and energy to do what I can to make this happen.”

You might ask yourself this:  When I think about what I’m going to do with my resources, my energy and myself, am I making decisions with confidence and clarity or am I  making decisions from a place of fear ?

How is that going for you?

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It’s a new year and you’ve probably made plenty of  useless resolutions. Why not think about this?   

What can you do to GET RID OF THE SHOULD and FOCUS ON THE CAN DO?   I ask you, what can be more important than this  when you live with unpredictable health?

It doesn’t matter whether you’re self-employed, employed by other or unemployed.   Setting expectations that you can meet is critical to creating satisfaction — your own and others. 

Let’s look at my own recent experience.   Two weeks ago, I’d planned to write ablog post before I started my week vacation.  When t time was running out and my ‘to do’ list was still pretty hefty, I ditched whatever wasn’t a ‘must do’.   I went into vacation feeling good about taking the time off. Yup.  You could say that I felt satisfied with myself.

On my return, I was determined to get the blog post done because it’s my  policy that no more than two weeks pass between posts.  But other work had piled up and my health took a nose dive (not major but annoying and time consuming).

Which is why I went to bed last night very tired from my recent health issues and frustrated, angry and feeling sorry for myself  about the things that weren’t  getting done.  I desperately needed an ‘expectation re set.’

Whether you’re dealing with your boss, colleagues, those you supervise, clients or your self.  You fall into a black hole  focusing on what you can not do rather than figuring out what you are able to do right now.

I developed an exercise called The Pulse for my clients and I’ve described it in detail in my  Workbook, Keep Working with Chronic Illness.  The Pulse is designed to help you stop with your stories, the blame, etc., and put your energy on what’s going on.

How are you doing with setting expectations that you can meet?  Are you willing to do a re-set when it’s necessary?  It’s not easy but can you plan for what it will take to do this?

OK.  I’m moving on in my ‘to do’ list.  How’s today going for you?

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She’s right that there’s not enough on my website or my blog about my work with people with chronic  pain conditions.  Nor do I have enough good resources.

The truth is that I’m immersed in several projects relating to people living with chronic pain conditions and have come across terrific resources.  But I haven’t posted this even though I know that I should.  As an entrepreneur whose livelihood springs from web-based marketing,  I’m doing an inadequate job of promoting my business.  And this  critical  to getting new clients.

I know this and, although I’m not happy about it,  it’s a decision made with intention.  I choose not to make the time because I’ve set my priorities.  And right now, this isn’t at the top of the list.

How about you?   How many tasks  are waiting to get done and slide further down the ‘to do” list?  Yikes, it’s especially true when holiday mode is in full gear.  That list grows so many pages I lose count and my energy saps just looking at it.

Do you beat yourself up, even just a little, when you think of what you haven’t done?   It’s so easy to do that but what a waste of time and your limited energy!

Yes,  healthy people struggle with their ‘to do’ list also.  But living with  chronic health challenges  makes it that much harder to get through the list.  There’s not much you can do anything about the fact that you’re never sure  if you’ll wake up feeling worse or better than when you went to sleep.  This often means that you can’t be sure what you’ll  be able to get done on a given day. That’s when you’ve got to reach into your inner tool box for what you can do.

Do you keep this tool handy?  “I can take charge of the way I look at this!”

As you think about what you have to do, ask yourself:  What’s going to help me get through just this day?  What is most important to you– meeting the project deadline or going out with friends to celebrate the season?  Do you have to write that last memo knowing that you won’t have time to exercise or food shop?  What will you have to ‘give up’ if you go to one more store to buy those gifts?

Whatever you choose, choose with intention, so you feel in your gut that you’re making the  choice.

We all make mistakes.  We all act without thought.  At the end of the day, forgiveness is powerful.  Especially when the person you forgive is you.

How’s it going for you?

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Q:  What made you write this book? 
A: More than anything, I just wanted to tell the truth about IBS. There are so many myths about IBS:  that it only causes diarrhea, that it’s not very painful, that it’s a mild inconvenience, that it’s a psychological problem, that it’s caused by stress…I could go on. It’s such a misunderstood problem, and sufferers themselves are often too embarrassed to talk about their symptoms openly. Luckily for me, I think the embarrassment wears off once you’ve had IBS for a few decades!
I wanted to write about what it’s really like to have IBS:  how it affects every single aspect of your life, how bad the pain can be, how difficult it can be to travel or to work.  But I also wanted to offer some hope, because my IBS has been much better over the past few years due to a diet and supplement regimen that works for me.

I was also disappointed at the range of IBS books currently available. The vast majority of IBS books are written by doctors, and some of them are excellent, but it’s not the same as having someone say, “I know how you feel, because I’ve been there.”

Q:  What do you think is the hardest part of living with invisible chronic illness while you are  growing up and developing who you are?

A: One of the most difficult things for me was the way that the illness made other people see me. When you turn down every travel invitation, every weekend away, when you can’t drink alcohol and can’t eat at certain places, when you cancel plans at the last minute or seem miserable and tired when you do turn up, then people begin to see those things as part of your personality rather than part of your illness. If that’s how you always behave, then that must be who you are.

I still struggle with this sometimes, and I want to scream “It’s my IBS that’s making me this way, it’s not my fault!”  But things are better now that my friends and family understand more about the limitations of IBS and how it affects me, and I hope that people no longer think that I’m naturally grumpy and dull!

Q:  At what point did you start thinking about how living with illness should impact your career/work direction?

A: I went through a terrible time in my first ever full-time job when I was in so much pain so often I thought I was going to have to quit and go back to live with my parents. I managed to struggle on with the job, but I hated the travel I had to do for work because it would always mess up my intestines.

My second job was a little better as there was no travel involved, but my ultimate goal was to find a way to work from home. I knew that even if I could just about cope with office life I was never going to be happy there – too much anxiety about access to a toilet, too many afternoons spent in pain. If I could work from home then I would have my very own toilet and much more control over my hours. I was very lucky to find a way to work from home over the internet, and this has made my life so much easier.

Q: Do you have any suggestions for others about what they should think about in doing this?

A: To be honest I realize how lucky I am in being able to work from home; not everyone has this option open to them. But I think the most obvious mistake I made, looking back, was to be so secretive about my illness at work. I tried to keep the entire IBS situation to myself, when I would have been much better off being honest about it and asking for help if needed. I suspect, for example, that I would have been allowed to stop traveling entirely for my first job if I had just explained why, but I couldn’t bring myself to do it. I should have been honest and trusted my employers to help me rather than hiding away in fear.

Q: Is there anything else you want to share here?
A:  I’d like to say to anyone with a chronic illness that I hope you are feeling well today, and that you find the strength you need to cope with whatever life throws at you, be it your symptoms, your doctors, or those pesky healthy people who like to give us so much advice!

Sophie Lee’s book,  Sophie’s Story: My 20-Year Battle with Irritable Bowel Syndrome, is available — http://www.ibstales.com/sophies-story.htm

You can also follow her on Twitter: http://www.twitter.com/ibstales

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The difference between a successful person and others is not a lack of strength, not a lack of knowledge, but rather a lack of will.  

Vince Lombardi

Motivation and will power fascinate me. Maybe because I didn’t have much of either when I was young and then they each blossomed.

Illness in my late 20′s  was transformational for me.  My gut response to devastating disease shaped how I responded to events from that time on.  From that dark place — in which I saw parts of me I didn’t know existed –   I was able to create intention.  It was an easy route to find motivation, direction and will power I didn’t know I had.

Webster’ s defines motivation as ‘incentive or drive’ .  It defines willpower as energetic determination.   In a recent The Boston Globe article, Goal Oriented,  Deborah Kotz explored new research on willpower.

“The reason for all this interest?  Willpower, it turns out, is one of the most important predictors of success in life.”

Among other things, the article notes that research shows that those who scored highest on self control at age 3 were far more likely to be healthy and financially successful adults.  No way would I  have scored high on self control at age 3 — or even 15 (not I who always  read the end first and snatched the frosting from the all cupcakes in spite of my brother’s wrath!).    It wasn’t until I was in my 20′s that any hint of who I would become started to emerge.

But I don’t think I’m typical.   I’ve noticed in my coaching practice that those with a track record of success  do better at marshaling the motivation and willpower  they need to face the challenges of chronic illness.  Even if resilience and hope falters, they’ve already developed the muscle memory.

So, what’s it been like for you?  Do you  “hide under the covers” and collapse when the going gets tough?  Or is there some part of you, some voice, that always pulls you up to face the day?

How do you face tough times, difficult situations, your unhealthy body?  Do you think you always had the tools to ‘push through’?

FYI – The header comes from this quote:  They can because they think they can. Virgil

QUERY:   HR Directors – We’ve got a grant to study the effects of a coaching intervention on people working who live with chronic illness.   Employees who participate would receive coaching services at no fee.  We ask nothing from a partner organization other than to communicate our message about this study to their employees.   Are you an HR Director or work within organization that you think would be interested in ‘partnering’ with us?  For more information:  Alyssa.McGonagle@Wayne.edu

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So what’s this about?   I asked myself,  what does it mean ‘to give advice’?

• My definition:  telling a person what to do.
• An online definition:  advice, n., recommendation regarding a decision or course of conduct.   

I could see how what I think are  ‘suggestions’ could be perceived by others as advice.  I think there’s a distinction here worth making.  My intention with these posts is to encourage you to think about a challenging situation differently.  And, in doing so, to be better able to improve it.

Think about this:  Have you experienced loss?  Do you fear more of the same?  You can do something about this but advice, recommendations,  won’t turn it around.  Let’s face it, when living with chronic illness, there are no ‘right/wrong’ moves.  Too many variables and unknowns.  Life is too complicated for simple solutions.

Do you consider the  suggestions I offer, play with them, roll them around in your mind?  If not, why not?   If you’re stuck doing this yourself, find someone — a friend, a coach — to help you work it through.

For instance, when I explore disclosure,  I suggest describing how symptoms impact you,  rather than talk about how they feel.  That’s just  one option.  Play with it, twist it around and  see how it goes for you.

Another example is working or not working.  This can be a biggie for most of us.  I recognize that it’s not always desirable nor even possible  to work when you live with illness.   I’ve written in my book and in these posts that research and my personal/professional experiences support the idea that work improves a person’s health.

But there are many exceptions to this statement.  Only you can figure out where you fit within this spectrum.

My intention and hope is to write something that motivates you to take a closer look at your situation through a different lens.   The stories I create are culled mostly from my clients,  and I use them as examples.  These short posts aren’t prescriptive.  They can’t possibly address everyone’s situation.  I create stories, culled mostly from my clients,  and I use them as examples.

Go ahead!  Adapt them to work for you.  Seek help  from others when you’re stuck.

If you don’t agree with an idea, share it here.  Tell me and others what you think,  what  works for you.  Share how you live  – and work -  with the challenges of chronic illness.

QUERY:   HR Directors -We’ve got a grant to study the effects of a coaching intervention on people working who live with chronic illness.   Employees who participate would receive coaching services at no fee.  We ask nothing from a partner organization other than to communicate our message about this study to their employees.   Are you an HR Director or work within organization that you think would be interested in ‘partnering’ with us?  For more information:  Alyssa.McGonagle@Wayne.edu

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Tomorrow we’re going to euthanize our beloved goldendoodle, Iko.   It’s very, very sad. He’s 7 1/2 years old and in his prime.

The difficult thing about a dog that has developed a chronic illness that the vet tells us ‘fatal’ (diagnosis: protein losing enteropathy)  is knowing when it’s time to say goodbye.  I know about living with chronic illness and I know how it can wear you down.

I’ve had a hard time knowing when it’s time to say enough and goodbye.  My tendency toward seeing the positive has prevented me from seeing how sick he’d gotten.  Lucky, my husband had a clearer eye.

I was a kid who was went from being terrified of dogs to desperately wanting one.  But my brother was allergic to fur and I got a bird. I guess I wasn’t dedicated enough because it died when I forgot to feed it for a week.

When I brought home a dog I’d found on the street in my first college apartment, my roommate informed me she was allergic to dogs. But not cats. So the dog went to a shelter and I got 2 cats.  They lived with me for many years through many changes.

I couldn’t possibly get a dog while the cats were living.  I knew they’d go nuts.  But when they died, I resolved this was the time.  My husband and I were looking for a dog in the want ads the week I found out I was pregnant with my first child.  He wisely put his foot down saying living with multiple sclerosis and having a baby was enough for our family to handle.

I finally got  my first dog, Tasha, when our youngest child was 3.  She was a malamute we found in a rescue center.  Over the years, we got other dogs and often had 2 at a time.

I tried to choose dogs that my children would love and that would be good to them.  I believed that animals would bring a bright spot into our lives.  In my mind, having a dog in our home normalized what I worried could seem abnormal and difficult for our girls.   I like to think it worked.

I’ve loved each animal in my life but Iko has held a special place in my heart from the day he arrived on a plane from Wisconsin.  We got him when I was 53 and feeling as healthy as I’d ever been.   I wanted a big dog to walk long distances with me since I no longer had colitis and the MS was so much better  – - and I actually could walk.  I wanted a dog that would hang out with me and be my loyal companion since I was working in my house full time and mostly alone.

Funny how it worked out.  He was the hardest dog I’d ever had to train to simply walk on a leash.  He pulled me down in his exuberance (and his fear of strangers) more than once giving meat least one concussion and several mashed bones along the way.  He’s so loving that he can’t let you leave without tugging on your jacket – no matter how hard I tried to train it out of him.  He’s been my best buddy and in my lowest moments, he’s made me laugh and reminded me that my life is good and full.

Animals can do that, can’t they?  I’m generously paraphrasing  from one of my favorite books, Marley and Me,  “Part of having a dog is learning that you’re going to have to say good bye one day.”

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I just celebrated my 60th birthday and a client (I’ll call her Laurie) was asking  what I ‘d done.  Describing the party we had with loving family and friends, I spoke of how great it felt to be healthy for it.  But now, just 2 days later, I was experiencing symptoms  – -some I’d never had before and some too familiar.

I rarely discuss my health challenges or how they affect me unless I think there’s a benefit.   But this time, my frustration was bubbling on the surface and I shared my sadness.  I described how the onset of pain and fatigue had taken the glow right off.

At that, Laurie started to cry  and then talk  — about her own anger and sadness in living with rheumatoid arthritis (RA).  She hadn’t spoken of this in the 8 months we’d worked together.

Turns out that Laurie had just come from her yearly performance review (she’s a paralegal).   She’d been relatively healthy over the last year but  recently, new pain made it difficult to use her dominant hand.

In her review, her boss said that she understood that Laurie was working as hard as she could and she appreciated that the work always got done.  But her boss was having a tough time with the unpredictable nature of Laurie’s symptoms.   Then her boss  acknowledged that she knew she liked control and the unpredictable challenged her and made her irritable with Laurie.

Laurie got the yearly raise she’d received for the past 10 years at this job.  But she left that meeting in a state of shock.  She couldn’t believe that her boss had said these things to her and worried about her future at this law firm.

Laurie has lived with RA for 6 years.  She needs this job to send her kids to college.  She worries that if she loses this job, she won’t find another one.   But she struggles daily with the pain, the unknown and all that living with chronic illness does to a person.  There are days that she just wants to give up and not face other people and their disappointment in her — or her own.

How do you live with never knowing how you’re going to feel?  Or how you’re going to manage in a situation?

There isn’t a blueprint nor easy tips and if someone tries to sell you that line, ignore it.  But I can tell you from my own experience, it takes:

• vigilant self focus (without self absorption) so you notice what you’re experiencing so you can manage it,
• desire for self discovery and renewal so you continue to be resilient and live with hope,
• patience with yourself and others when you face disappointment.

I’ve also experienced in my work how imperative it is to have someone with whom you can talk.  That person should  challenge you to be more than you thought you could be –  a therapist or a coach.   That’s the best investment you can make in your health.

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After all when you have limited energy, you have to be strategic and use it wisely.  Isn’t that what I suggest here?

Maybe I’m wondering  more this week because  I’m taking a week vacation with my husband and I’m sick with a miserable chest cold.    It’s not an MS flare, eye disease,  allergies,  no broken bones.  Just the kind of sick even healthy people get  — coughing my brains out.  But as is typical for MSer’s, a virus wipes me out.  My kayak lies quiet on the dock as my husband paddles away.

But don’t get me wrong. I’m not complaining because it’s been lovely to be here together and mostly unplug from the routine and work of  life.  Then today,   I remembered I had a blog to get out. Typically, I write it in advance so  it goes out scheduled  – -  but I ran out of time last week.

So I tore myself away from reading  The Bridge: the Life and Rise and Barack Obama (terrific – have you read it?)   Which led me to the question I posed at the opening of this post. Why do I do this? And that’s when I figured I’d share what I realized in this process.

I write because I have heaps to say  on the topic of work while living with chronic illness from decades of doing so.   And I write because it’s a source of personal empowerment when my body disappoints.

I have a hunch that  living in a debilitated state so much of the time can  leave you needing to  juice your sense of impact  –  your personal power — maybe more than you would have had you been healthy. — your personal power.   And I know I’m  not alone.   Here’s a paraphrase from an email I got this week:   “No matter how badly my body disappoints me, working gives me a sense that I still have something to add. I never realized how important it is until I got sick.”  He’s a father.  grandfather and happily married.  But satisfying work is what makes the difference when his body slides down.

I don’t glorify work – -  it can be toxic or just a slog. But when it’s even just satisfying, that can be enormous.   And there are many ways to create satisfaction and a sense of competence even with a body that’s a source of dissatisfaction.

Do you know what gives you that juice?  Can you tap into it?

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If you’ve been reading this blog for the past 9 months, you know that I had a bad health setback.  Last August, I had a bad fall left me with broken ribs and a banged up shoulder. It took months to figure out the cause/treatment of on-going pain which turned out was a torn rotator cuff.  Meanwhile, blurry vision in one eye led to a new diagnosis in my disease list, Possner Schlossman.  I had a history of eye disease and had been up close with pain.  And, as always happens, these things seem to trigger the multiple sclerosis symptoms — banding, fatigue, etc.

Whine, sigh.  I ‘d been living this life for 30+ years in which my health could get really bad.  But even if when it took years,  I was Ms. Optimism holding onto the faith that I’d deal with whatever came up.

The thing is, this time felt different.  I’m turning 60 in a few months and maybe that plays a part.  But the physical injuries/raw pain + another chronic issue left me off kilter – - out of balance.    After months of physical therapy and two cortisone shots, the pain was getting worse.   I wondered — maybe the years of illness were catching up and my body wasn’t as resilient.

I  couldn’t find anything resembling my usual sense of hope.  Even when I “Focused” (do you know about focusing???  It’s better than therapy and meditation — ask me about it) with my Focusing partner, I couldn’t find it.  OR resilience.  Funny thing . . . hope and resilience aren’t something anyone can see in you.  I just knew it wasn’t there. When my business slowed with several clients ending and no new ones in the pipeline, I didn’t look for new work projects as I typically do.  The juice just wasn’t there.  Do you know what I mean?

I told myself I wasn’t depressed.  I was realistic.  Really?

About two months ago, I went back to my physical therapist to see if he could help me.  I didn’t think it would help but he suggested another exercise to strengthen my motion.  I literally had to push myself to add it to my exercise plan.  Desperate, I also started doing the Tai Chi form after 35 years for my balance.   Hmmm, maybe there’s still some place called hope in there.

Whatever the reason, within a few weeks the pain changed and improved.  Each time I did the new shoulder exercise, my shoulder seemed to move better.  As the pain receded, physical and psychic energy built.

Maybe you recognize this syndrome:  I’d gotten used to feeling lousy and it was hard to redefine myself, remember that even if I was a little tired, I could probably push through it now. There were many days I had to remind myself that I was getting better.   I could push myself harder again — that I had to do it.

Slowly the nerve pain and the “banding” that came on with the shoulder pain, disappeared.  A month ago, I cooked for several hours at a time over a few days, something I hadn’t done since last summer.  I could walk  the dogs again without worry  if they pulled.   This past weekend, I  gardened hard for two days in a row.  I’m planning to kayak again if it ever gets above 60 here.  These were all on my list of things I’d have to let go of.  Not for now.

Funny thing,  I have an abundance of new clients and prospects in the pipeline and some really interesting projects, even a speaking gig that requires travel.  And I’m looking at this with excitement.  Amazing.

I didn’t think I’d feel this good in my body again.  I’m not sure I feel the same resilience, though, that’s for sure.  Maybe that’s part of  what my Dad used to call the  “aging process”.  But it sure is  good to know that my ability to heal hasn’t left completely.

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