Thursday, July 30, 2015

Two Essays on Living with Chronic Illness

I'm back, finally, after a very long and difficult month. My dad went into hospice this month after a year-long battle with melanoma and passed away two weeks ago. We have been away most of the month - by his side in hospice, on a vacation planned long ago, and back in Rochester again for his memorial service this week.

So, now we are trying to return to normal life (or as normal as our life gets, as my husband says!). We came back home to car repairs, appliance repairs, college tuition due, and a host of other urgent matters to take care of.

While I catch up and try to to get back into a more normal routine, I thought I'd share two recent essays of mine on chronic illness that were published while we were away this month:

The website Mamalode published my essay 5 Things I've Learned From Living with Chronic Illness in early July. Please take a look and share it with your friends and family - it's a positive perspective on this crazy life we all lead, but it is also applicable to healthy people, too. Everyone can benefit from slowing down, simplifying, and finding more joy in the little things.

Last week, the ProHealth website (which I highly recommend for up-to-date and accurate information on our illnesses) published my essay Riding the Chronic Illness Roller Coaster, about the emotional ups and downs of living with chronic illness and how to cope during the difficult times. It's a topic I have often written about here on my blog that we all struggle with, whether we've been sick for 1 year or 20 years.

I would love to know what you think about either of these topics - you can leave comments on either website or right here on the blog.

And I hope to get back to regular blog posts soon, once I get all this urgent stuff taken care of!


  1. Anonymous7:24 PM

    After 15 years of pacing,and trying many ways to live with ME/CFS, the physical up-and-down is still the hardest aspect for me. Some days, I seem like a perfectly healthy person. I do stuff! I make plans with other people to do other stuff...then wham! I am in bed, in pain, so fatigued I cannot function. There are two parts of this that are hard: 1) it's hard to trust myself to 'show up' for stuff, and 2) it's embarrassing to cancel out on other people and still hope they will know I am sincere and trustworthy. So this unpredictable factor is hard...I still struggle not to judge myself for days when I 'fail'. This illness requires that we be compassionate to ourselves over and over. Through it all, I am most grateful for family and sweet friends who never make me feel bad for the days I cannot 'do stuff.' Your advice to take it one day at a time is spot-on. Also I would add, we must each believe in ourselves, in our own inherent value and goodness.

    1. You make some very good points! I am so fortunate to have good friends who totally understand and keep inviting me out no matter how many times I have to cancel at the last minute - they know that it's always possible and just accept it - and me :) My family...not so much! I'm glad you could relate to the article - thanks for taking the time to leave a comment here.