Getting Your Life Organized With ME/CFS

I recently read an article from Dr. Sarah Myhill, a leading ME/CFS specialist in the UK, that mentioned how the people who get ME/CFS are those who “burn the candle at both ends”.  Is this true for you?  For me it is.  When I became ill I was seriously burning the candle at both ends.  Sarah says:

They hold down a demanding job, care for a family and are often active sportsmen/women. I see many top athletes with CFS – professional footballers, cyclists and swimmers, decathletes, many county badminton, hockey, cricket and squash players, and several quality marathon runners. These people are the very ones who find it difficult to ask favors of others.

I have come a long way over the years, I have learned how to say “no” to others but I still struggle with asking for help.  This will still get me into trouble at times with my health because, as my husband says, I’m a stubborn “bone head”.

Basically what those of us with ME/CFS has to do is to get our lives organized.  I’m big on organization and I love taking on a task where I can take something that is a mess and make it neat and orderly.   Doing this with our own lives, however, can be a lot more difficult and may not feel as rewarding throughout the journey, but the end result will be worth it.  Dr. Myhill offers some great suggestions on how to organize your life with ME/CFS.  Read over these and then take a few moments to reflect on where you can organize your life better.  Let me know your thoughts and what areas you personally need to work on in the comments. 

  • Ask others to help you do things. 
  • Stop being house proud.  (This is one that I REALLY struggle with.  I have to have a clean house all of the time.)
  • Hire a housekeeper and purchase a dishwasher if you don’t already have one.
  • Simplify your life.
  • If others offer to prepare meals for you, take them up on it.
  • Make a standard shopping list with the staples.  When you make your weekly or monthly grocery list, you will only have to add the extra items you need to purchase.
  • Sarah recommends having as much of your food delivered as possible.  In the area I live this isn’t an option because we don’t have any grocery stores that do that.  Check around your local stores to see if they make deliveries if you are too sick to get out and shop yourself.
  • Have a standard weekly menu – you will always know what to prepare and you won’t have to think about what to eat.  Something I had done in the past when I was working full-time was to create my daily menu for the entire month.  I would take the last couple days of each month and prepare my menu for the next month.  It really made things easier. 
  • Choose foods requiring minimal preparation.  
  • Take advantage of your washing machine and dryer.  I quit hanging clothes out on the line years ago.  What little we saved in electricity wasn’t worth making my health worse.  I always use the dryer year round. 
  • Give up the iron and ironing board!  It’s 2009, not 1959.  Ironing is just a bunch of extra work and while there are a couple of fabrics that wrinkle and you may have a shirt or two that need ironed, there’s no need to iron underwear and hankies as our mothers and grandmothers did.
  • Keep a schedule.  Dr. Myhill says our bodies like things to happen on a regular basis.  Sleep and eat at the same times daily and pace your activities so that you are doing about the same every day and at the same time.
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  1. I struggle with this one mightily, even after years of “working on myself” and my perfectionist tendencies. I feel guilty doing nothing, and at the same time, know I have to have regularly scheduled downtime if I want to get anything done, like – ever.

    This has given me an idea for a post (on my blog) about how to get this done on a limited budget. For example, I love the “hire someone and get a dishwasher” ideas – but what if you can’t afford that? There have to be ways — creative ways — to get life under control without going into debt to do it.

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