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ME/CFS Negativity - Think Dodgeball

7/30/2013

2 Comments

 
PictureRose of Sharon
I appreciated Tim’s heartfelt comment to last week’s blog and it got me thinking about negativity that comes from others and how to deal with it.  Over time, we all develop coping  mechanisms – some are more successful than others.  One approach that I’ve used often to deal with ME/CFS negativity - and negativity for other reasons as well - has been particularly helpful for me.

 When I’m talking with someone or reading an e-mail, and the other person sends me a stream of negativity – whether they understand what they’re doing or not – I play mental dodgeball.  Remember back to when you were in grade school and you were at recess or in gym class.  Picture yourself as your kid self.  You’re on the team that’s in the middle and it’s your turn to dodge the ball.

Now you see a ball coming right at you.  Your reflexes kick in and you move to your right.  The ball misses, passes by you, and goes on its’ way.  You’ve dodged that ball.  You don’t really care where it goes next.  It’s no longer your concern.

So back to that person sending negativity at you.  In your mind, step aside and let it flow past you.  Don’t absorb it, don’t dwell on it, just let it go by.  And yes, sometimes you have to mentally step aside throughout most of a conversation but you learn to not have lots of interaction with that person even if you encounter them frequently in your life.  A wave, a smile, a kind word, then off you go - you don’t hang around long enough to have to dodge negativity.

Playing mental dodgeball has become a good strategy for me when I’m dealing with ME/CFS negativity.  What strategies do you use?  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 Recovery – Trust the Process

7/22/2013

2 Comments

 
Picture© 2013 TSM
People use the word trust a lot.  I’m not sure if they really understand its’ meaning.  I recently had some sparks fly between me and someone I was working with on a project who is also a good friend.  We were both surprised by the sudden eruption but I told her it was OK because I trusted her.  I know her good intentions and the stress she’s feeling because her name is on the project.  And it reminded me of my struggle with ME/CFS when I was riding the daily roller coaster despite my efforts to follow the protocol.

 On days when I was on schedule and feeling like I was managing my energy, getting rest and doing ‘the right things’, it was easier.  On days when I felt lousy and nothing seemed to be going according to plan, it was horrible.  Those bad days could do me in if I allowed myself to stay in that frustrated, down place.  I finally came to understand that I had to trust the process of recovery.  It’s easy to trust the process when you’re having a ‘good’ day.  The real test of trust comes when you’re having an ‘awful’ day.

So on those awful days, I had to steer my frustration and depression back into trusting the process.  Of course you have to have a process to place your trust in.  My process was my protocol with the daily record as the anchor.  It served not only as the grounded center of my work to solve my version of ME/CFS but it was an anchor for my sanity.

We all know too well how much fodder ME/CFS serves up for self bashing and depression and just ‘giving up’.  The process was my way of turning that negative energy into positive action to get well.  I placed my trust in that process even on the ‘bad’ days.  Do you have a process you can trust?  How do you cope with negative energy?  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 Progress - Look How Far You've Come

7/16/2013

2 Comments

 
Picture
There’s an endless fence that runs along the edge of our yard.  The mower can’t get the weeds that grow close to it so not being fond of weed wacking, we’ve been watching them grow and grow.  After discussing how unsightly they had become, we decided to dig up the weeds along the fence and mulch.  You probably know where this is going.

 After three hours of digging, pulling, hauling and mulching, we had completed four sections.  We were sweaty, caked with dirt and tired.  My son observed that the fence was so long that it didn’t feel like we made any progress for all the work we’d done.  Of course, it reminded me of my struggle with ME/CFS and the days that I felt the same way about how slow my recovery seemed to be.  Some weeks, I didn’t think I was any closer to being well again despite all my efforts at following the protocol and ‘doing the right things’.

Standing at the fence, it was my turn to say, “Don’t look at how far we have to go, look at how far we’ve come.”  That’s what my advocate said to me when I was struggling with ME/CFS and couldn’t see the improvements in my health.  It was helpful to hear, “six months ago, you had to sit during a shower and someone had to wash your hair because you couldn’t hold your arms up over your head for that long.”  It was true.  Six months later, I could take a shower standing up.  OK, I had to rest before and after but it was progress.

So this morning before the heat cranked up, we finished eight more sections in our third round of digging and mulching.  We still have a long way to go – not quite half way yet but what we’ve finished looks great.  And when you think about the long path to recovery from ME/CFS, remember to look at how far you’ve come.  Are you seeing progress?  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 Treatment – Working with a Provider

7/9/2013

2 Comments

 
Picture
By the time most of us received our ME/CFS diagnosis, we had seen several practitioners hoping to find answers as to why we couldn’t regain our strength and energy.  Batteries of tests later, we still had no answers.  So we were labeled with ME/CFS/Fibro or whatever it’s called in your region.  For most of us, this pronouncement was accompanied by a complete lack of a treatment plan.

 So we are struggling with a chronic condition whose symptoms include pain, complete fatigue, brain fog and the inability to get restful sleep.  From this place of low functioning, if at all, we have no answers and no solid treatment plan.  And I don’t consider ‘rest and you’ll feel better’ a treatment plan.

What to do?  I flailed around for quite awhile before I started keeping a daily record.  But once I started, I began to have specifics that I could document and discuss with my provider.  Instead of looking for him to provide me with answers to my illness, I provided him with solid data about my patterns and symptoms.  Full disclosure, he never seemed to care much about my energy patterns.  But he liked seeing symptoms that he could directly treat.  And he loved getting feedback via follow up data to determine if the treatment had any effect.  So I learned to work with him as a partner.  It was a completely different relationship than I was used to but it worked for ME/CFS.

Do you have a provider that you’re working with?  How do you successfully partner with him/her?  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 Rest – Ease and Release

7/2/2013

4 Comments

 
Picture© 2013 TSM
Grace’s blog last week got me thinking about what rest is.  Some would say it’s the opposite of physical action – inaction.  Some would say it’s a state – at rest.  I think of it as a combination of stilling the body, the mind and the spirit.  Without all three, for me, it isn’t true rest.

 When I was struggling with ME/CFS, I spent many long periods of time in bed – supposedly at rest.  But for many of those hours I was either completely awake or in a semi asleep state.  Although my body was horizontal and only moved occasionally, my mind was grinding - either hung up on one particular worrying thought or bouncing all over the subject map.  My mind was definitely not resting.

Then sometimes I could accomplish a period of time when my mind was quiet and my body was still but my spirit was low.  My attitude and my outlook were down.  So I was still draining my energy allowing it to ooze out of me as I sat in a negative place about my situation.

Ultimately, for me, true rest came when my body was still, my mind was at ease and I released the emotionally heavy weight of my situation so I could lift up into a place of real rest.  In those moments when I was able to accomplish true rest, I could replenish my energy and take steps toward regaining my health.  How do you rest?  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

4 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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