Chronic Invisible Illness


Joy H. Selak and Dr. Steve Overman

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Travel Tips

On this page, we invite both patients and providers to offer your own ideas and strategies for moving successfully through the phases of chronic illness and learning to Live Well. We have posted selected contributions below, and want to add to the collection, so that others may benefit from your experience and success.

In our book, Joy has a chapter on her Top Ten Ways to Live Well, Even While Sick, for example she has learned to 'take care of herself first', to 'make friends with fatigue', 'enroll in the school of whatever works' and 'search for silver linings'. Please use the form below to submit a few of your own Top Ten Ways to Live Well, Even While Sick.

 

 

 

 


Helpful Tips on Living Well from our Readers

 

From Susan Reabe (Willow):

Hello to all my frieds that share so many similarities though don"t know each other. I hope I can help you and vice versatile. The best way I have found to lessen morning pain and stiffness is to use a heating blanket. To be considerate of my partner, I purchased the kind that has two controls for each side of the bed. I found this a wonderful, comforting simple, but instant relief of the deep morning pain. It is sometimes is the simplest ideas the can help with our horrific symptoms, and we can avoid or reduce more invasive treatments or medications.

I have more to share but my energy level is already starting to tell me it is time to rest for a while.
Hope I helped even just to let you know there is someone else trying to manage this invisible though horrific chronic illness we've been blessed with, and I mean that both with sarcasm and honesty.
For today, for this hour I wish you a beautiful Day!
Sincerely,
One of us
Willow

From Kathryn Mullins:

"I have moderate Myalgicencephlomylitis(ME) and Fibromyalgia for the last 15yrs. Here's a couple of helpful hints that I have used:

  • If you have to go out, dress for comfort and layer your clothing. I can be cold one moment and sweating the next. Also carry a small napkin size towel with you to use for "mopping up".

  • Always have water with you for even though I can't move around a lot, it's easy to get dehydrated.

  • I've nixed the makeup, except maybe some waterproof mascara and blush because I never know when I will start crying.

  • Where ever you go make sure you know where the restroom is.

  • Have a list of all your medication/supplements with you at all times. I keep a list in the car and in my purse along with what illness I have. This is quite a bit of info for just leaving the house so it's a good idea to make a list you can refer to instead of trying to remember everything.

  • Know your body, mind and spirit. Cherish and feed all of what you are. Stand tall in your truth. Don't be afraid or guilty of saying "NO, I'm not able to do that at this time. But maybe some other time." 

  • Cultivate a relationship with at least a couple of people that have similar challenges. We need to be able to "dump and cleanse" without feeling guilt.

  • Feel in the deepest core of your being that you are worthy of love and you have to start with yourself."

From Laura Kilkelly:

"Celebrate the occasional moments of pain free living. Have patience, heating pads and a sense of humor for those other days."

From J. Lynn Preston:

"Prepare for exciting 3-5 day adventures by planning 2 days of total rest on either end." She also writes about her appreciation for her "Circle of Women" and their weekly meetings for purposes other than talking about our illness. They discuss their dreams and in the process find out the problems and/or joys each of us is having and gain personal insights about others and themselves. All feel stronger with the wisdom and support of this Circle of Women."