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ME/CFS Progress - Look How Far You've Come

10/29/2019

2 Comments

 
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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 whacking, 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


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ME/CFS Perception – The Crazy Stigma

10/15/2019

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Over the weekend I was talking with someone about how people change when they go through a personal struggle that challenges them to their core.  By comparison, other difficulties in everyday life are less stressful and seem easier to handle.  And of course, I began to think about my ME/CFS days and how much I have changed – maybe even gained – in my more robust ability to weather the tribulations of a healthy life.
 
This person didn’t know me when I was sick and I was about to mention my ME/CFS struggle but I hesitated.  The stigma of ‘mental weakness’ or crazy has always been attached to ME/CFS.  Whenever I had told someone that I was once sick with ME/CFS, I would see that association flash across their face.  Suddenly, even though they had only seen me healthy, I was dropped down a few notches in their estimation.  I became less then whole.  Damaged with the potential to be weak or needy.  Maybe even a burden.  So, I hesitated.
 
Then I thickened my skin and plunged forward, knowing that the more we talk about ME/CFS, and the more we engage with the main stream, the better the odds of getting to the answers for this cruel disease.  And as I voiced that I had once been bedridden with ME/CFS, the response was OK.  Better than I expected but it was still tinged with a bit of stigma.  And it renewed my determination to be part of the conversation because so many of those who are struggling with ME/CFS frequently disappear from view.

 
Are you getting the crazy stigma when you talk about ME/CFS?   How are you dealing with it?  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 Isolation – Be Connected and Get Help

10/8/2019

2 Comments

 
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I was recently in a remote place with no cell service and no access to WiFi.  At first it was bliss.  No phone ringing.  No text messages requiring immediate response.  No daily diet of news feed.  Just quiet and my own thoughts.  But of course, I eventually felt a bit isolated and disconnected.  It reminded me of when I was struggling with ME/CFS and how alone I felt at times.

We are trained in our culture to be independent.  To be strong and capable.  The old ‘boot strap’ adage comes to mind.  We believe that people who are dependent are weak.  They are inadequate.  We somehow learn not to ask for help.  Then we find ourselves in a situation like ME/CFS where we need to ask for help and we can’t.  We don’t want to be a bother or impose.  We don’t want to appear weak or needy.

So, we find ourselves struggling with ME/CFS, which is a cruel disease that leaves us feeling better one day and crashing the next, and we’re fearful of asking for the help – which could be key to our recovery – because we’ll be seen as weak and ‘just depressed’.  Doubly cruel.

It’s important to take a good look around and see those in your life who could help.  Make an effort to connect.  Make an effort to explain what’s happening to you.  If you’ve read my book, give it to them and ask them to read it.  If people don’t understand what you’re going through, it’s hard to support you.


One lesson I learned after I was fully well again – people who cared, who wanted to be connected and who wanted to help had no idea what to do.  They need your help to understand and to know how to help you.  Divide up your needs into smaller pieces so it won’t be too much for one person.  What are you doing to be connected and to get help?  What are your strategies ?  What works for you?  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 Pacing – Protect Part of Your Day

10/1/2019

2 Comments

 
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When you’re struggling to recover from ME/CFS, pacing is one of the most difficult challenges.  It’s too easy to get caught up in the flow of the day and lose control of what you had intended.  We quickly can become victim to over doing and triggering a relapse.  It can be absolutely maddening.  We know what we need to do and not do.  We have planned out the day.  It’s in alignment with the protocol we’re following and we know if we follow the plan then we will have a successful, positive day.

Then the unpredictable, real world seems to take over.  By the late afternoon we’ve either blown the plan to bits or we’re barely on track just hanging on.  And we seem to do this way too often.  OK, we’re human and we can forgive our weaknesses.  But ME/CFS is not forgiving.  ME/CFS is opportunistic and just waiting for an opening to assert itself like an energy gremlin.  So what to do?

One of the strategies I used was to plan my day with built in breaks.  I would sandwich them around the most demanding part of the day and sometimes also right in the middle if need be.   I would have ‘optional’ parts of the day that I could opt out of depending on my energy levels and what else was still required of me.  Essentially, I planned for the unpredictable.  I gave myself space in the day to rest and to do whatever self-care I needed.


How are you pacing for the unpredictable?  What part of your day do you protect?  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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