...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Healing – The Challenging Last Phase

9/30/2014

2 Comments

 
Picture© 2014 TSM
Just recently I received an email from an ME/CFS patient who has been recovering and has reached a better level of functioning but has stopped progressing.  This is a story that we are all too familiar with.  Many of us have reached that level but can’t seem to get to the next and often last phase of full recovery.  I am not an exception.  I spent several rounds in ‘Almost There’ territory myself.  The first few being miserable failures where I could see and feel the possibility of full recovery and I dashed to what I thought was the sure finish line.  We all too familiar with that story too.


Yes, I crashed and was worse than before each time.  Did I learn from this?  Not at first.  After two of these devastatingly disappointing setbacks, I got the message.  I needed to be as careful and as intentionally paced in the last stretch as I was in the first few when my body’s messages were clearer and easier to read.  It took great restraint to succeed in making a full recovery.  But I made it.

There is a prevalent message in the ME/CFS culture that patients have to learn to live with ME/CFS.  According to the accepted mantra, no one fully recovers.  This is SO not true.  Yes, there are many different dis-eases mixed up in our cruel ME/CFS diagnosis.  But many patients do fully recover - they just don’t talk about it.  But that’s a topic for another blog.  My point is that the last phase of recovery is so personally challenging.  If it was easy, we’d all be fully well.  It takes even more focused attention and ‘case-study-of-one’ perspective because the clues, symptoms and patterns are much more subtle.


Where are you in your recovery?  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 Feeling Empty – Sleep Deprivation

9/23/2014

6 Comments

 
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I haven’t been sleeping well lately.  There’s a lot going on and I’m caught up in too much brain activity.  And night after restless night, of course I began to think about ME/CFS.

I remember when the exhaustion was so pervasive.  I had a mental flashback to the lowest days of my ME/CFS years when even holding a glass of water was beyond my strength and the brain fog was so thick that I couldn’t remember my thoughts for more then a moment or two.  It used to be long days of running on total empty.

It wasn’t until I understood the role that sleep deprivation was playing in my struggle with ME/CFS that I began to improve.  We dissected everything about my nights in order to improve my sleep – Comfort, light, sound, timing and medication.  We tweaked and tweaked.  When we finally got it right, I was getting about 6 hours of solid, uninterrupted sleep every night.

So yesterday I tweaked a few things in my current sleep environment and I finally slept for 7 hours last night.  Even my active brain couldn’t keep my body from finally getting some needed rest.  This morning I feel a little more energy and a great deal of gratitude that ME/CFS is a nightmare from my past.


What’s the status of your sleep patterns and environment?  What needs tweaking?  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


6 Comments

ME/CFS Emotional Baggage – Dump It

9/16/2014

2 Comments

 
Picture© 2014 TSM
I’ve been helping someone clear out a family home which is full of memories – a mixture of good and bad.  But mostly the house is weighed down with so much emotion that it feels like the structure itself sags under the burden.  Of course I started to think about my struggle with ME/CFS and the crushing assortment of emotions that I wrestled with.

In the beginning, I was consumed with frustration that I had no answers and anger that I was so quickly dismissed as ‘just depressed’.  Then as I fell into the ME/CFS trap of push/crash cycles I developed self-blame.   And as the months then years dragged on with no improvement, I felt guilty about the drain I had become on my family and the lost time that I had stolen from them and from me.  Then I added in a good dose of shame which Andrea and Donna have recently commented on.  Eventually I had created a toxic soup of emotions which I was drowning in.

Pile all the worry on top of that and I was definitely going under.  Talk about emotional baggage!  Could I have been any better at bringing myself down?  A surgeon couldn’t have succeeded in removing my self-esteem and self-image more precisely.  And what about all the energy I drained from my limited reserves just festering over this mountain of emotional baggage?

After I spent a couple of years letting these emotions keep me under, I finally came to the understanding that I was only making my struggle with ME/CFS even harder.  It took a great deal of determination to dump the emotional baggage.  But once I started to off load, it felt great.  I became intentional about my emotions and I packed lightly.  How are you dealing with your emotional baggage?  What strategies have you developed?  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 Guest Blog - Energy Management by Tim Boland

9/9/2014

5 Comments

 
Picture© 2014 TSM
Donna’s recent sharing from a woman who has lupus and spoke of managing her energy got me thinking about my own experience in my life with illness.   As a youth, I had chicken pox, measles and the mumps over a period of years.   Like many of us, I’ve also had bad colds from time to time and the flu.   Fortunately for me, my health overall was very good until my late fifties with the onset of CFS.

As I was enjoying the afternoon in my lawn chair today, my body started feeling relaxed and good.   Not free of all pain or some numbness, but definitely better.   I love to photograph and saw a most beautiful white puffy cloud and was tempted to get up and make a picture.

It occurred to me that when many of us become ill, we often do our best to rest, to become well, and it is also a common refrain for many to start feeling better, and to jump right back into our routine, or at least to start doing more than our bodies are ready for and then have a relapse.   Just as with this illness, it is hard sometimes when I am feeling better and want to get more done to feel the after effects of too much activity until the next day.

As when we have much milder illnesses, whether a cold, the flu or the mumps, there is a temptation to start doing too much too quickly.    Sometimes we hear of someone who just ‘can’t shake this cold’ but do eventually become better.   So in that sense, a more serious illness shares this cycle of truly needing rest and recuperation and not overdoing in order to get better.   


It is vital especially now to not do too much, even though on an afternoon or upon arising in the morning, we feel much better.   It’s natural to want to use some of that energy.   It’s hard to pace, to not do too much.   So I was thinking to myself, wouldn’t I rather have an excess of energy today, to even store up a little extra energy?     Would my body like this better, even though the temptation to create or do more house work seems so appealing?    My sense is that though it is fun and even life affirming to want to be truly active, I know my body needs this extra energy, even little bits from time to time, to heal and to recover.

Tim



Thanks Tim!  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


5 Comments

ME/CFS Approach – Time to Re-evaluate

9/2/2014

6 Comments

 
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As the kids go back to school, a lot of people return to a more normal pattern of life and activities.  The summer slips away and we’re looking toward fall and the changing of the seasons.  But for many people who are struggling with ME/CFS, the summer wasn’t that much different.  It was, for the most part, more of the same ‘dealing with ME/CFS’ issues.  For many, the summer provides a frustrating reminder of what we can’t do as we watch others plunge into all the outdoor summer activities.

When I was first struggling with ME/CFS, summer was a cruel exclamation point on my failure to return to a healthy life.  It seemed like an endless time of other peoples’ leisure pursuits that were beyond my participation.  Well, the good news is that it’s over.  So as others trend back to their regular schedules and plans, it’s a good time for those struggling with ME/CFS to do the same.

As we often hear, same approach, same result.  Now is a good time to step back and evaluate your personal approach to dealing with your version of ME/CFS and how it’s been working.  For some, the default approach is day-to-day with no formal plan.  For others, the approach is more structured.  Whatever you’ve been doing, take time to evaluate where you are now compared with three months ago, six months ago or last year at this time.  Are you healthier?  About the same?  Somewhat worse?  Have you been consistent with what you want to be doing to manage your ME/CFS?  Has your approached worked?  Do you need to make changes?

This process can be frustrating or inspirational.  For me, honestly, I failed in my first few attempts to shift my approach to ME/CFS.  But after a few years of getting absolutely nowhere – actually worse which culminated in a crippling relapse – I had a moment of realization.  If I ever wanted to get out of the ME/CFS hole, first I had to build a ladder and then I had to climb it – one rung at a time.


How would you evaluate the approach you’ve been using?  What changes are you planning to make?  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

6 Comments
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    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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