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ME/CFS Support Network - You have to Reach Out

7/24/2018

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Recently, the topic of isolation and ME/CFS has been raised frequently in emails I’ve received.  So often when we’re in an unfamiliar place, we tend to be isolated.  If it’s geographically unfamiliar, we resist asking for directions and just muddle along without help.  If it’s emotionally or psychologically unfamiliar, we don’t want to talk about it for fear of others judgment that we’re weak or crazy.  And if it’s physically unfamiliar, we rely on a medical system that for the most part doesn’t have a clue what to do with us.  For ME/CFS sufferers, that creates a triple play of isolation.

In order to break out of isolation, we need to reach out.  Unfortunately, the nature of ME/CFS separates us from many of the daily networks that we used to depend on for connecting and support.  Our workplace, neighborhood, community groups and social groups are diminished if not completely unavailable due to the isolation that ME/CFS can create.  But despite our very limited energy levels, we need to reach out in order to create a support network.  So how do we do that?

After I was fully well again, one of the important things I learned was that many of the people around me wanted to help but didn’t know how to – friends, family members, neighbors, community members.  And even though I thought I had explained to them what was happening to me, many of them had no idea what I was actually going through.  At the time, that seemed unbelievable to me.  But I realized how true it was when so many people – including a family member whom I spent time with – told me after they read my book that they never understood my illness until now.

So for someone who is already dealing with ME/CFS each and every day, please understand that MOST of the people around you don’t know what you’re up against.  And really, when you think about it, how could they?  As ME/CFS sufferers, we struggle to understand the roller coaster cruelty of ME/CFS.  It’s a nightmare!
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OK, so you’re going to reach out.  First, people need to know what’s happening to you.  If you have a copy of my book, give it to the people close to you and ask them to read it.  Or find other pieces written by ME/CFS sufferers and share them.  This will be an eye opener for your family and friends.  Then, come up with ways that people around you can help.  Even the simplest things can make you and them feel better.  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


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ME/CFS Recovery Goal – Our Aim is Off

7/17/2018

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If you ask most people who are struggling with ME/CFS what they want, the answer is usually, “I want my life back!”  What most aim for is normalcy.  The ability to be the person they were before ME/CFS.  They want their family life, social life, work life and healthy life back.  They want to live again.  They don’t want restrictions and pacing.  They want the whole ME/CFS nightmare to go away.  And I was no different.  I searched and searched for the magic cure that would get me from nightmare to full health again.

During that search, I crashed and relapsed so many times that I really can’t number them.  It was brutal physically, mentally and emotionally.  Honestly, as my daughter would say, I was a hot mess.  The truth that I finally discovered is that no one can go from the cruelty of ME/CFS to full recovery in one magic step.  Not even two or three or ten.  And since I’ve been fully well again and I’ve met others who have fully recovered, not one of them ever found an instant cure.  If there was a key piece to their recovery, it was discovered as they recovered – as other symptoms began to receded, it became prominent.


So what’s your recovery goal?  Are you ready to get off the crash and relapse roller coaster?  For whatever reasons, some of us need to ride it longer than others.  When you’ve had enough, reassess your goal and correct your aim.  I finally realized that I needed to get to a pace where I could handle things and not get sicker.  A pace plateau.  Something I could sustain for weeks and not crash.  Then I would try a little bit more.  I if could handle it, I stuck with it for a long time to ensure that I didn’t get sick.  And so on.  If I couldn’t handle it, I quickly dropped back a step and settled in for a while.  Did I like this snail’s pace?  Of course not!  I hated it!  But I finally got my life back.  So where is your aim these days?  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


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ME/CFS Repetition – Keep Your Sanity

7/10/2018

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This summer in New England has seen a lot of hot weather.  It hasn’t been two or three days in a row.  It’s been a long conga line of hot dry days.  Day after day and week after week.  And it’s only the third week in July.  I can’t remember the last time we had a good rain.  I’m not an AC lover but it’s been on almost constantly.  And inevitably when I get into drawn out repetitive situations, I think about my struggle with ME/CFS.

When I finally quit riding the roller coaster after two brutal years and settled into the protocol, it was a long, repetitive, frustrating path.  Whenever I looked forward, the repetition seemed to spread out endlessly before me.  Like this long hot summer, it didn’t seem like it would ever end.  I had to find the courage to settle in.  I needed to take it a day at a time.  I needed to stick with the recovery plan and work it every day.  Honestly, I couldn’t think about how slow the pace was because it drove me crazy.  Much like this summer, I don’t think about how many more hot days are coming.  I take it day by day.  Right now, there’s another gorgeous sunny day outside my windows.  The kind I hoped for in the dead of winter.
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My best days of dealing with the slow repetitious pace were when I looked over my health log and saw the real progress.  I was slowly making my way back to full health.  And the proof was right there written in black and white.  It was a balm for my sanity.  Are you on the slow, repetitious path that the protocol requires?  What helps you stay sane?  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

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ME/CFS Attitude – Stilling the Voices

7/3/2018

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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 you MUST handle today and what you can 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 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
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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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