National Invisible Illness Week

Today is the start of National Invisible Chronic Illness  Awareness Week which runs through September 14th.

How many of you who are ill with environmental illness, chronic fatigue, fibromyalgia, etc. have been told that you don’t look sick?  I have been told that I look good when I feel horrible.  On one hand I am glad that I am not looking as horrible as I may feel but it is hard to explain to others when you may not look as bad as you feel. On August 3, 2012, I posted on this site “Me in the Beginning” When you look at my picture taken in 2002, it is easy to see how sick I was.  I don’t even think I realized how sick I looked until later when I saw my picture.  I knew I felt bad and something horrible was wrong but looking at myself in the mirror daily the changes were gradual.  I didn’t suddenly wake up with dark circles, a haunting look, skinnier than I had ever been and with yellowing skin tone.

I want to raise awareness that environmental illness, chronic fatigue, fibromyalgia and other chronic illness may not necessarily affect a person’s appearance. It is truly and invisible and silent terror that many go through on a daily basis.  I hope that a day will come when someone says they have some unusual or unexplained illness, they will be treated with respect and their complaints taken seriously.

Toni Bernhard wrote a wonderful article entitled The challenges of Living with Invisible Pain or Illness. She is also the author of  an amazing book, “How to Be Sick”.  A dear friend of mine published her book, Intentional Healing: One Woman’s Path to Higher Consciousness and Healing from Environmental and other Chronic Illnesses, a year before I completed Allergic to Life:  My Battle for Survival, Courage, and Hope. I hope these writings will allow you to know that you are not alone in your battle with invisible illness.

Please take a moment to visit the Invisible Illness  website and read the stories that others have shared. Had I been more aware and on top of things this year, I would have included a blog post on this site as I have done in the past.

The Good Old Days – or were they?

Many times, I have found myself making comments such as “in my old life” I did this or I could do that.  I am always referring to how much better my life was “in my old life”.

Toni Bernhard, author of How to Be Sick and How to Wake Up, is also a contributor to Psychology Today.  Last month she posted on the good old days syndrome.  I read this post and it got me to thinking.  Maybe everything about my old life was as good as I remember it.  Yes there were things I could do and things that were possible for me to do in that old life.  But was I doing everything I could?  Was it as perfect as I remember it?  Of course not.

I think you will enjoy Toni’s post.  It definitely got me to thinking and maybe I won’t be so quick to compare my life to my old life.

 

 

Not-To-Do List

How many times have I talked about my to-do list or lists in general?  Probably more times than you wanted to hear about.  Today I am going to talk about a Not-To-Do List.  Author Toni Bernhard (How to Be Sick and How to Wake Up) writes a blog post titled Turning Straw into Gold for Psychology Today.  Earlier this month she wrote a post titled “A Not-To-Do List for the Chronically Ill“.  The post offers eight tips on what not to do when you are chronically ill.

Toni has lived with chronic illness for over ten years and her insight about dealing with chronic illness and how we often treat ourselves when we are chronically sick has provided a great deal of help to others. 

I think you will enjoy Toni’s Not-To-Do List as much as I did.

 

 

 

How not to treat yourself with chronic illness

Toni Bernhard writes for Psychology Today in a blog called Turning Straw into Gold.  Toni lives with chronic illness.  In fact she spends most of her days in bed with flu like symptoms that began over ten years ago.

I have read Toni’s book How to Be Seek:  A Buddhist Inspired Guide For The Chronically Ill And Their Caregivers.  This is a wonderful book about dealing with chronic illness and can be used by anyone.  Toni has written a second book, How to Wake Up:  A Buddhist Inspired Guide To Navigating Joy and Sorrow.  In a recent post on How Not To Treat Yourself With Chronic Illness , she talks about how she treated herself when first diagnosed with chronic illness and states that this topic is expanded more in her new book.  I have Toni’s book in my list of books to be purchased and read soon.

12 Tips from 12 Years Sick

Toni Bernhard, author of How to Be Sick: A Buddhist Inspired Guide for the Chronically Ill and their Caregivers inspired me with her way of dealing with being chronically ill.  I have not had the pleasure yet of reading her newly released book Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow.  Toni writes from the comfort of her bed.  In fact because of her illness, she spends a great deal of her time in bed.

Not only is she a wonderful author, Toni Bernhard writes for psychology today.  I recently read her article 12 Tips from 12 Years Sick.  Her 12 tips are insightful and are something I strive to remember and put into place.  For those of you suffering from chronic illness, I think you will enjoy this article.

Chronic Fatigue Syndrome Sufferers – you are just tired

I recently read a wonderful article written by Toni Bernhard for Psychology Today.  The article:  Another Blow to Chronic Fatigue Sufferers.  According to the American Academy of Family Physicians in a new Patient Information sheet, those with Chronic Fatigue Syndrome are just suffering from a disorder that causes them to be very tired.

So to those of you out there that have been diagnosed with and suffer from Chronic Fatigue Syndrome, are you just very tired?  Or are you tired to the core, unable to function, suffer debilitating fatigue or wake up as tired as you were when you went to bed?

I think the American Academy of Family Physicians has done a huge disservice to all of us suffering from Chronic Fatigue.  I have been diagnosed with this syndrome and do wake up many days unrefreshed.  I do have days when my legs and arms are achey and tired.  Some days I would love to just crawl back into bed and rest but force myself to keep moving sometimes until I just hit the wall.  My problem is that I feel ok and then do more than my body wants to do and pay the price later.  I am trying to be better about managing my energy but when I have it I feel like I did before I became ill and it feels so good to just keep doing.

Toni Bernhard has written a wonderful book entitled “How to Be Sick”.  There is a link to her website in the section titled Other Authors on Illness.  You can also read Toni’s article from Psychology Today at

http://www.psychologytoday.com/blog/turning-straw-gold/201211/another-blow-chronic-fatigue-syndrome-sufferers