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Friday, November 11, 2011

Valuable Lessons from Chronic Disease

I've pondered this post for a long while, not wanting to appear whining or complaining, yet knowing that I'll need to draw, in part, from my own experiences and that it could come off that way. I don't mean it to. That's not what I do.

But in recent weeks, my chronic disease, bronchiectasis combined with asthma and a dangerously compromised immune system, has become more challenging. I'm learning a lot about living with chronic illness that I suspect could be useful to those who have family or friends that have one too. So, I thought I'd share a few observations.

What is "chronic illness"?

Without going all medical, it's basically an illness or ailment (think chronic back pain) that cannot be cured, just managed. Chronic fatigue syndrome, asthma, arthritis, Chron's disease, Coeliac disease, MS, Parkinson's, depression, persistent pain, autoimmune diseases or acne, are some -- there are lots of others. Wikipedia (not the best medical source but good for the basics) lists diabetes, irregular heart, high blood pressure and cholesterol, COPD, even some forms of cancer. It didn't list sleep apnea as one, but I would.

Also (according to Wikipedia) "The World Health Organization (WHO) reports chronic non-communicable conditions to be by far the leading cause of mortality in the world, representing 35 million deaths in 2005 and over 60% of all deaths.

In other words, taking more vitamin C won't cure it. Won't hurt. Won't help much.

A lot of us have chronic disease or medical issues and don't really realize it (probably most of us!). We think it's just the way we are. And it is. But sometimes it is more aggressive or obvious than others. There can be a lot of gray area and a lot of deep water to wade through. Sometimes it's pretty tough to deal with.

What does "managed" mean?

Certain medicine or treatments may alleviate pain or symptoms, but the disease or condition doesn't disappear. You're not cured, just in better control. I don't like to be "managed." Even by Gypsy, who tries his best! When it comes to certain things, I'm a serious control freak. I pick my battles wisely, but in many things, and certainly in terms of my physical and emotional self, I like to be in control.

People with Chronic Illness aren't always in control.

By this, I mean that if you have a chronic illness, you can't depend on yourself to be at your best for a big day out or have appropriate or not-annoying behavior in public. For example, I cough uncontrollably. Scares people. Scares me. Not the best behavior in a concert, say, or at a lecture or meeting. Those with arthritis may not be able to open a jar or package or do a craft like knitting as easily as others. Others require insulin or other medications to maintain their balance.

You can take your meds, do all the right things. But you can't control the illness without external assistance. For those of us like me who prefer to be in control of our own lives, this is difficult. It wears you down, and sometimes you can't control your emotions.

(We'll talk emotional control, in a minute!)

People with Chronic Illness are often tired.

Some chronic issues do not affect sleep. Others do. In my case, I might cough so much I can't get to sleep for several hours after I've gone to bed and I may wake up in the night with the coughing. Rick is a saint and Gypsy is an angel. Let's just say that you don't want to be my roommate. The next morning it is almost impossible to get going.

But for those with sleep apnea or chronic fatigue, or those who have persistent back pain, for example, sleep can also be affected. And it's not just that you don't get enough sleep -- it's that when one operates without sufficient sleep, it can affect mood, reflexes (which can impair tasks like driving), ability to perform work tasks as well as when you're at the top of your game, or even the ability to work at all.

People with Chronic Illness are often embarrassed.

It depends on the illness, but for folks like me who have something that is obvious, it can be embarrassing. Believe me, when I cough, which is frequently, people know I'm around. It's gross. I'm not contagious. But I sound like I have the flu. More than once I've been in an enclosed elevator and people just shrink away -- if they could crawl into the wall, they would.

I was a theatre major. I know how to act and I do it every day. I performed on stage and I love doing TV when I can and speaking gigs are one of my favorite parts of my job. I don't mind being the center of attention when the attention isn't on my health. When it is, I'm the one who just wants to melt into the wall.

People who have Chronic Illness (or at least some) will work as hard as they possibly can. Maybe to their detriment.

Well, maybe that's just me. But I don't think so. We want to show people that we can be productive, do things as well or better than anyone else. We're not going to let a little old health problem get us down. We're not slackers or shirking a job or a task. Sometimes that means not taking as good care as we should. People tell us to let go of things. We ignore them. That's not good, but it's what we do. (Well, it's what I do.) I'm working on that.

People who have Chronic Illness can be fragile emotionally -- more than they show.

When you never know just what 'episode' or physical event is going to kick you into a bad place, it can be scary. You try not to think of the friend who died too young -- or in my case, my father's story, which has some parallels to mine. I always understood much (not all) of the nature of my dad's physical illness, but it wasn't until many years into my own that I realized the terrible emotional toll it took on him. Feeling broken and out of control. He was prickly, and now I fully understand why.

It may not be one thing that breaks you down, but the collective accumulation of little things -- personal loss, workplace issues, a fender bender, the death of a friend or concern about a pet. My problems getting helpful information from the doc's office had me completely flattened. Almost everyone gets overwhelmed when lots of unpleasant things happen or stress is increased. Everyone. But when you're physically challenged, that emotional stress seems to hit in a more visible way. Many Chronic Illnesses can't be seen. Therefore, people think you are just fine. Just terribly weepy. (I truly believe in my case, my emotions are far more fragile than my health.)

Sometimes that's OK and just what you want. Sometimes, it isn't. When you break your leg or have a body part replaced or get shingles all over your face, everyone knows and is maybe a little more willing to cut you a break, lend a hand. When you have something that isn't so visible -- and there are a lot of those -- it's pretty easy to forget that person might need some TLC. (I am very blessed that most of the folks around me "get it." That's not the case for everyone.

What Do We Need?

That's probably the biggest question I'm asked -- What do you need? How can I help? There really isn't a good answer.

Sometimes I'd like to say "cut me some slack," but the truth is, the one I should be telling that to is myself. Understanding if I withdraw is helpful. Sometimes it's just too much effort to pick up a phone and call someone, partly because I have to talk (without coughing if possible), partly because I want to be engaged in the conversation and sometimes I just can't be.

We had dinner with dear friends the other night, a semi-regular Friday night gig. I was so tired I could hardly communicate, yet it meant so much to be with people I loved. After I touched base with a number of people about what is going on with me medically and its implications to my life, my friend sent a note and said "I could tell something was wrong, but decided not to ask," respecting my the darker world of my silence.

Ironically, she is one of the people I could tell openly because of our friendship and because she understands. In her note, this strong cancer survivor said "There's a lot I could say from my own body/health experiences, but I think that would take away from just being with you/hearing you in this moment." I can't tell you what that meant.

Don't undermine my confidence in my health care professionals.

It's all right to suggest a second opinion or share something relevant. But accept my choices.

Understand that for any of us, every day (or at least some of them) can be a physical challenge. Whether it is movement because of pain, being ever mindful of protecting ourselves with the appropriate medications, staying awake, keeping odd hours (because we stayed awake when we would have liked to have slept) or dozens of other things, we sometimes feel like every day is climbing a mountain.

It's important to have confidence in the professionals who are helping us walk through our path to wellness. I do my research, I have people I can ask, just to make sure things seem "right." If you see something that seems terribly wrong, make sure you say something. But don't destroy my confidence in the people who are helping me most.

The Power of Positive Thinking

I often take a lot of good humored flack for being one of the most half-full, optimistic and positive people around, trying to look at problems as opportunities. For years, I've tried to spread the word that we can't always change the things around us that bother us, but we can change the way we approach them or let them go. I really do believe that. I have tried for years to look at the half-full of illness, which is wellness and the part of me that is well.

But understand that sometimes we have to face up to the realities and until we do, we can't shift the attitude to treating the problem as an opportunity. I'm a big believer of visualization as a powerful technique to heal and enrich so much of our lives. Everyone has their own thing and it might not be yours. But accept it. Just as you accept when they become overwhelmed.

I am recently reminded that Steve Jobs delayed surgery in favor of alternative treatments that weren't as effective. This will vary for everyone based on their personal beliefs, but I believe strongly in facing up to the medical realities and working with a good team, while not overlooking the additional benefits of complementary alternative therapies.

That won't work for everyone, but it is worth remembering that the mind is a powerful part of our operating equipment. How we use it matters.

Lots of love helps!

When I posted something on Facebook about some bad news, I was overwhelmed with the kindness of people who replied. Overwhelmed to tears. Support is so valuable.

And on that note, I want to thank my blogger buddies who have often been a lifeline of friends I've never met (for the most part!). You're the best. Of course, you don't have to listen to me cough day after day. But somehow, I think you'd understand!

Friends are the best. Period. They are our angels. Our lifelines. I am grateful to each and every one of mine, as well as to Rick, my office colleagues and my family. You see, it's for people like all of these that we really want to be at our best. Speaking personally, you are my motivation and you matter more than you know.

NOTE: All these pix are mine (as usual) except for that lovely one of the bridge on the Seine, which is by my Parisian friend Jerry. Thanks, Jerr!

30 comments:

Jeanie said...

I could never leave a comment to equal the eloquence of what you have written. I can only say thank you for sharing yourself so openly and honestly.

Marilyn said...

When you said you had a physical procedure I hadn't heard of I didn't realize you have a chronic illness. Mine I would have to say is arthritis, which so far I can deal with. What a post and thanks for putting a difference slant on those with chronic illnesses.

Barb said...

Dear Jeanie, I can certainly relate to what you've posted here (I take it to heart, so to speak) - though, to be honest, I wouldn't have put your smiling face and upbeat spirit together with chronic illness. So very sorry to hear of your ongoing struggles. Just to write about what we face sometimes makes it easier to bear. I've enjoyed all the photos that accompany this post, esp the textured sitting person which seems so mystical.

Joanne Huffman said...

Eloquently stated. Sending gentle hugs.

anno said...

Lovely and insightful; this was just beautifully said, Jeanie. So glad to hear about the team you have working with you -- you've been much on my mind.

Bonnie K said...

very beautifully said.

ds said...

Oh, Jeanie, I had no idea! Thank you for being so open, honest and eloquent about every aspect of living with chronic illness. You are so right: attitude is everything.
Yours is solid gold.
I am glad that you have the medical team, and the support and love of your family and friends. Those of us on the sidelines do not often realize the effects of our own attitudes.
You are one tough and gracious lady.

Retired English Teacher said...

I am overwhelmed with what you have written. I feel fortunate to have been able to read what you have to say about living with chronic illness. And, as Barb said, I would never associate your smile and take on life with one who suffers on a continual basis with something that can't be cured.

This piece should be published and given to each person who is ever diagnosed with a chronic disease. I think it would really help them with how to live the best life that they can.

Sending love and blessings your way.

Janet said...

Jeanie, I had no idea you suffered from a chronic disease. The way you wrote about it is very informative and shows what a wonderful person you are. I'm glad you're surrounded by loving friends who understand and support you. Sending big (((hugs))) your way.

Lisa from Lisa's Yarns said...

What a great post, my dear! I am so sorry that you suffer from this. I can't imagine the looks you often get when you cough... Makes my heart hurt because it really is awful to draw attention like that. :(

This is just a great post on so many levels. I had no idea you had a chronic disease either.... Thank you for sharing - I am sure others will read this and totally relate.

beth said...

jeanie....i had no idea you had a chronic illness and what you wrote here is beautiful and truly opened up my eyes.

thank you for sharing you with us !!

Judy Winter said...

I think you've just done wonders for your immune system by releasing this and bravely posting it on your blog, JC. I've also shared it on my blog
. Lots of love and hugs. xoxo

Dr. Kathy McCoy said...

Oh, Jeanie! This is such a beautiful and important post for anyone with a chronic condition and the people who love them. Thank you for your candor in discussing your own chronic illness and for your valuable insights. Hugs to you!

Gretchen Cochran said...

Hi Jeannie. Your guidance for all of us wanting to wish you well, but stumbling over a proper phrase, is most helpful. The photos describing each of your points are remarkably apt. Wishing you a gentle hug. Gretchen

shoreacres said...

jeanie,

No need to worry about seeming to be whining or complaining. Straightforward, honest and down-to-earth practical seem much better terms for describing this post.

I happened across a remarkable quotation from Joan Didion yesterday. She was being interviewed about her new book, "Blue Nights". She said,

“Writing is what I do. Writers tend to think of writing things down as opposed to not writing them down. I wouldn’t use the word “therapeutic” because there is actually no therapy for this. On the other hand, if something is looking me right in the face, I have to look back at it. ”

It seems to me that's what you're doing - looking back at something that's looking you in the face. It's not easy. We've both been through it with parents. Still, it's not the worst thing in the world - especially when it helps us know we're not alone.

Tell you what. Princess and I will try and make it up to Michigan in the medium future, and we'll take you for a ride. You can cough as much as you need to.

Blissed-Out Grandma said...

Jeanie, You are always upbeat, and photos show you to be very vivacious, so it is surprising to learn that you have bronchiectasis and other ailments, and I'm sorry to hear that things have become more challenging. Please don't hesitate to share. You have lots of experience with chronic illness and a unique perspective that is valuable to your readers. I especially appreciate your caution that friends should not undermine someone's confidence in their care team. Take care, please.

Arti said...

Jeanie,

Thanks for sharing something so personal and in a way that's beneficial for your readers too in its information. Also, I've been really impressed by the photos, and seems like you know my thought, you've posted at the end about them. Great photographer you are. I particularly like the red cherries against the snow, the black bird on tree branches, and the candle lights. I don't know what to say to alleviate the pain and frustration you must be going through. But it's my sincerest wish that you can be strong and that your ailments might find a reasonable management. All best regards to you.

jet1960 said...

See you are so eloquently quiet about yourself that I didn't even know you had a chronic illness! Now I feel bad about my whining! Hang in there! Love and hugs!

Ruth said...

There was no whining here. On the contrary I am moved by your humility and grace in the face of your chronic illness. I am so terribly sorry to hear that you deal with this, which I did not know!

You do all of us such a service in the thoroughness of this post, all the aspects of your life, of so many people's lives, that are affected by this kind of illness that does not go away.

I'm ever so grateful that you have loving family who get it, and that you seem to be more and more conscious of taking care of yourself. Thank you for making me more aware too!

OldOldLady Of The Hills said...

Thanks for stopping by Jeanie....Always good to hear from you....

I understand exactly where you are coming from. As you know, I "suffer" with the same Chronic Disease. Been confined to my home for seven years because of it....But, this confinement has helped me stay as healthy as possible, under the circumstances.
(Though I have just had a terrible Bronchitis which has undermined the already existing chronic disease...Talk About Cough....(lol)....)
I think you have stated how it is to live with a chronic disease in a very clear way...Ofcourse, it is different for each person---LIFE is different for each person.....
But I so appreciate you sharing "how it is" with you.....And by the way...There is MS and Parkinson's too, where Chronic Disease is concerned....
I think what is so hard about Bronchectusis IS, that almost no one has heard of it and so, has little knowledge of what it is or what we live with---I certainly didn't before I was diagnosed. One feels so alone in any kind of illness...THIS is no different.
Thanks for sharing all that you have, my dear Jeanie. I appreciate it more than you will ever know.

Jennifer Richardson said...

Oh friend,
I trembled reading your story
because my heart wells up
with ache and understanding
and I'd love to hug your neck
and soothe away the cares
of breathlessness
...I know that dizzying ache.
I send love and prayers
and living words flush with hope
and healing.
You're a treasure and I'm cheering
wildly in your corner.
loving and lifting you,
Jen

Bella Rum said...

Thank you, Jeanie. How helpful this post is to others, and it's so like you to try to reach out in a way that not only expresses your own journey but speaks to the plight of others.

We've been concerned this past week about some health issues, and I've found myself sleepless most of the week. I landed here on your site tonight and found this post. So glad I did. You're very inspiring.

Your outlook on life is wonderful and I'm sure it carries you through a lot of tough situations. Thank you for posting this and all the best to you.
Bella

Tracy said...

Oh, Jeanie... I can relate so much, so I am glad you posted this. I am sorry you have some hard times, and wish you much grace and peace as you tackle some difficult moments. So much I admire your attitude--very uplifting. I have chronic fatigue, so I understand a lot about living day to day with a chronic illness. Some days are better than others, that's for sure. So I try to do my best with what each day brings me, and bring what I can to it. Life is too short and precious. May we stand together and lift each other up. :o) ((HUGS))

~*~Patty S said...

stating the facts and sharing like you did certainly does not seem like whining Jeanie

thank you for enlightening us and I am sorry for your suffering and discomfort

take care my friend
oxo

Leann said...

Hi Jeanie

I was just diagnosed with fibromyalgia and I know and feel every one of the words that wrote. However you are much better than I at expressing it.

I've come to realize that we each must do as we feel best.

Wishing you a goods night rest. I just took a muscle relaxer and a pain med - hopefully I will get a good one too!

Leann

Annie said...

Direct. Matter-of-fact. Unsentimental. Uncomplaining. And all served up in a framework of beauty. "It is what it is", she said. So typical of what we expect from our Jeanie.

Quiltmoose - Dagmar said...

Dear Jeanie,
I certainly can relate to everything you said with such beautiful words. I am not able to express myself so eloquently, even in my mother tongue.
I am sorry to hear of your struggles. You have always been compassionate and caring when you heard of my illness and never mentioned your own health problems.
Thank you for sharing now and for your inspiring thoughts!

Take care!
Love, Dagmar

Sandy K. said...

Very well expressed, Jeanie. I live with chronic illness as well- as I'm sure many do, as you have said. Asthma, with mild COPD, and Undifferentiated Immune System disease. This presents as overlapping symptoms of Rheumatoid Arthritis, Lupus and Schloderma. Lovely. Fatigue and body aches are my prime symptoms and I pray I never go "over the edge" to anything more full-blown. We'll see. Changes are in the wind. But every day I work at normalcy and try to listen to my body when it says "quit." I try:). The glass-half-full is a blessing. You are doing a great job of managing your life, and loving it at the same time. Keep it up. Your presentation at Downton Abbey was great:). I could tell you love speaking, and sharing. I have to work very hard at that, myself. Take care of yourself. Oh yes...you mentioned in a recent post that you wondered what you could do with your writing - how about just doing it? Submit this article to a health magazine and see where it takes you! Far, I am thinking.

laurie said...

seeI told you I would find the post of which you wrote, I wanted to understand you better and now I learned a bit a more about you, this post broke my heart but opened my heart as well, you are a survivor, and a warrior, I find you an inspiration,

Joanne Huffman said...

Well worth repeating!

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