“Both abundance and lack [of abundance] exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend." - Sarah Ban Breathnach

Tuesday, May 12, 2009

ME/CFS Awareness: How CFS Affects Me

Yesterday, I blogged about my symptoms. Today, I am blogging about how it has affected my life. That means a trip down the old memory lane. It isn't something I allow myself to do often, because that usually means comparing myself to the "old" me, and that isn't always pleasant!

Before CFS, I was:

An interior decorator
A church volunteer
A gardener
A good homemaker
A genius
An exercise enthusiast
A social friend
A good wife
A really, really good mom
An avid cook
A nature lover
A shopper

Living with CFS is like living inside a box. Most of those things from the "old" me no longer fit inside my box. The things that are most important to me have to be reduxed just to be able to fit.

I am no longer an interior decorator. That was just a fun hobby for me and completely superfluous. I now volunteer one hour a month at church instead of several hours a week. My garden now consists of a single pot. My current exercise routine is about 15 minutes of stretching a day. I am hoping to be able to add 5 minute of aerobic activity soon. I can do laundry. I visit with friends once a month at my book club. I can cook a quick and easy meal a couple of times a week. I shop online. I still love nature; I just haven't visited in awhile!

My husband is a good husband. He loves me and supports me in every way. He has lovingly lowered his expectations.

Here's the hard part. I am no longer a really good mom. You see, being a really good mom is really hard work. You have to be able to set structure and follow through with consequences when it is breached. You have to be able to weather unhappy children. You have to be able to teach them skills to become independent. You have to work with them side by side. You have to be available to them when they need you, not just when you are feeling good. You have to get up pretty early for the little ones and stay up late for the older ones.

Now, don't get me wrong. I still love my children ferociously, and that goes a long way towards making up for faults. But. I can see how much this has hurt my family. I can see that they are a little lost without me. I can see some crumbling around the edges. I can see their yearning for their mom. You know, the "old" me.


Renee said...

Oh, I hurt for you and I identify with what you are saying here. I am so glad you are willing to share all you have on ME/CFS and like I said before it is helping me to do the same. I am sending out an email to my friends and family with a few places for them to go if they want to know what real people are doing to manage a real disease. You brought tearts to my eyes and memories I don't often look back on either.
Gentle hugs

Sue Jackson said...

Shelli -

I agree - it's too painful most of the time to think of the old me and pointless to compare then and now since there's not much we can do about it.

I know I've never met you in person, but I can tell from what you write about your family that you are a GREAT mom! I felt a lot of guilt at the beginning, too, but over time, I realized that my family was far more accepting of the new me than I was. My kids didn't focus on what I couldn't do - to them, I was still Mom. I'm sure your kids feel the same way.


Dusty Bogwrangler said...

The thing about being a parent is you only have to be good enough - and you are way good enough even with your limitations. I can tell that from the way you talk about your children.

This illness can't take your identity away.

I love what you said about your husband 'lovingly lowering his expectations'. I think that's something we all need to do for ourselves, lower our expectations - with love.

Thank you for a thought provoking post. Warm wishes across the water. . .

Anonymous said...

Hi Shelli

It would be great to see you blogging for ME/CFS Awareness again in May 2010.

Remember to sign up to the list at so we can collate a list of those who are blogging for ME/CFS Awareness this year.