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ME/CFS Attitude – Find Thankfulness

11/26/2013

4 Comments

 
Picture
When I sat down to blog about Thanksgiving, I looked at what I had written last year.  I don’t think I can do a better job of expressing how I feel about this holiday and struggling with ME/CFS at the same time.  So here it is again:

Thanksgiving traditionally generates clichés about thankfulness.  The mantra
basically goes like this:  Be thankful for what you DO have, not what is missing. 
Most of us would agree with this outlook.  It is better to focus on the positive.  But it isn’t easy to do especially when you’ve been struggling with ME/CFS for a year or for 20 years.

When I was sick, I would allow myself to indulge in some self pity around this time of year but I knew that was totally unproductive and a waste of what little energy I had.  I would then get irritated with myself for my self-centered attitude and so just added more negativity to my load.  But it can be unfair to expect a person who is struggling with a body that can’t handle normal activity to be upbeat, positive and ultimately thankful.

So as the rest of the world around me went about their daily routines, I would look at my life and try to find something to be thankful
 for.  Mostly, I focused on the few people around me who understood what I was going through and supported me in large and small ways.  I made a point to tell them how much I appreciated what they did.

And after I let go of the negativity toward myself, I realized that I needed to appreciate the work I did all year long.  The work of getting well again.  Sticking to the snails pace recovery, following the protocol when I didn’t want to and being present in my life in whatever way I could realistically handle.

How are you handling thankfulness?  Are you finding things to be thankful for?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

And for you and all of your loved ones,
I Wish you a warm and Bountiful Thanksgiving,
Be Well Again,

Martha

4 Comments

ME/CFS Attitude – Stilling the Voices

11/19/2013

2 Comments

 
Picture© 2013 TSM
Everyday ME/CFS sufferers deal with choices.  The ‘energy envelope’ as it’s referred to nowadays.  The emphasis is placed on how much energy you have, what MUST you handle today and what can you postpone or just let go of altogether.  This approach refers almost exclusively to physical energy
expenditure.
 
When I was sick, physical energy conservation was a primary concern for me.  But I came to realize over time that emotional and psychological energy were even more important.  Doesn’t make sense?  Here’s how it would go for me.
 
During the times when I was ‘resting’ and making well balanced decisions about my physical energy, my mind was still active.  Almost racing along despite the brain fog, I kept sifting through things mentally like a Virginia Woolf stream of consciousness passage on speed.  And despite my best efforts to be upbeat and positive about my situation and progress to date, I would eventually wander down the self questioning and negative path of doubt.  And then would come the damaging and harsh list of everything that I was failing at because of *@!# ME/CFS.

For me, this was exhausting.  And debilitating.  So over time I learned to still my mind.  Beating myself up mentally wasn’t changing anything except eating up precious energy that I needed for the long haul.

So after you fend off the insensitive comments of others, how do you look upon yourself? Do you fester over your situation?  How do you still the negative voices?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

2 Comments

ME/CFS Transitions – Progress to Being Proactive

11/12/2013

2 Comments

 
PictureMisty
Three weeks ago we took in an abandoned Maine Coon cat so she could be transitioned to a new home. Her prior life was with an elderly woman who dotted on her and made her quite comfortable.  Then, her owner became ill and was in hospital care for a month.  During that time, the cat lived alone in the house and a neighbor came in to feed her. She had always been a reclusive cat who disliked strangers so the month was traumatic.  Her owner wasn’t able to return to her own home so we ‘captured’ the freaked out cat and deposited her on our heated porch.  Needless to say this transition has been hard.  Watching her struggle reminded me of myself when I was first diagnosed with ME/CFS.

Being ripped out my normal life and dropped into the wastebasket of ME/CFS was horrifying.  I hated it.  I railed against it.  I expended a lot of energy being angry with my situation and the medical establishment. The cat on our porch is doing the exact same thing.  She is clearly pissed off.  When she’s not eating or sleeping, she hisses and growls at everyone except me. 
She’ll even swat if the wrong person gets too close. She clearly wants affection and purrs loudly when I pet her but she’s confused and mad.  Who wouldn’t be?

She wants her old life back just like I did.  But the path for her to find a new home is not to go back the way she came.  And so it was with me.  I had to progress forward to find a new path in order to regain my health.  I had to progress to being proactive – to taking responsibility for my recovery and to stop wasting energy on the blame game.  The cat on our porch doesn’t have the tool of reasoning.  I can’t sit down with her and explain that she’s just in transition and we’re looking for a permanent home for her – a new place that’s warm and loving and much like her old home.  Before I accepted my struggle with ME/CFS, I was in that same transitional place.  If you’re still there, It’s time to progress forward into taking proactive control of your illness and your path back to wellness.  Are you out of transition?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your
permission. 
You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most
welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha
PS Let me know if you would like to adopt Misty

2 Comments

ME/CFS Judgments - Dealing with the Stigma

11/5/2013

2 Comments

 
Picture© 2013 TSM
Three weeks ago I had a Basal cell carcinoma removed from my left leg just above the knee.  They took a considerable chunk of flesh which was necessary to get all of it.  My postop instructions included “don’t bend your knee” for two weeks or you’ll risk infection and tearing out the stitches.  Basically they said “sit with your leg up”.  The first few days were relaxing and I got pampered.  But by the fourth day I was sick of being sick.  And of course this reminded me of my struggle with ME/CFS and the endless, often dark tunnel of rest and restricted activities that took away four years of my life.  My present situation was easy by comparison.

So I adhered to instructions and did my best not to bend my knee.  This required keeping my leg stiff as I walked and navigated stairs.  And I figured out how to drive with my left leg straight out jammed up under the dashboard.  As I limped about doing my errands I quickly realized that people were staring at me.  And not the casual glance that strangers exchange when they pass each other in a public place.  These were long, hard, head turning stares.  Since I wasn’t on crutches and my large bandage wasn’t visible, I was an oddity of some kind – permanently damaged and handicapped.  I felt the same judgment that I had suffered when I was struggling with ME/CFS.  Many people labeled me as weak and inferior – depressed, lazy and a hypochondriac. This stigma was almost universal because most of the medical world had determined that I didn’t have a real physical illness.  And even after I was fully recovered, the stigma remained as people assumed that I was weak and could mentally implode again at any moment.

This recent experience has been a sharp reminder of the mental fortitude required to deal with the many cruelties of ME/CFS. 
How do you fend off the judgments of others?  What are your strategies?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

2 Comments
    Picture
    Hello,  I'm
    Martha Kilcoyne

    Welcome
     to our Community!

    After struggling with CFS for four years I am fortunate now to be fully well and making choices about how I want to live my healthy life.  One choice is to be an active part of the CFS community and to offer one voice from the fully recoverd to the dialogue.  I'm glad you're here!   For more about me, here's my Bio.

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