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ME/CFS Stress – Letting Things Go

8/2/2022

2 Comments

 
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Lately, the amount of stress in my life has been on the rise.  It’s primarily a function of too many people and needs pressing for my time and energy as we’re in the midst of multiple life passages.  But my situation now is always put into perspective when I think about the level of stress I felt when I was struggling with ME/CFS.  By comparison, today’s stress is a stroll on the beach.
 
My understanding of all the variables that were affecting me during my illness is clearer now that I have my mental focus back along with the long view.  One piece that I get now is how much stress I was under in addition to the underlying physical illness that knocked me down (for more info on my version of ME/CFS, check under Further Lessons on the website menu bar).  We know that a physically healthy person can be undone by stress.  It takes a heavy toll on our biological and nervous systems.  When those systems are already ‘on tilt’ and not able to cope with ordinary daily demands as they are with ME/CFS, a heavy load of stress can keep you from recovery.  For me, the ME/CFS stress came from every direction – some self inflicted and some imposed by others needs and judgments.  It was like a knock out punch when you’re already on your knees.
 
The only way I was able to recover was to let all the stress go.  And to let go of all the stressful things that accompanied it.  Of course, I didn’t do this right away.  That would have been too easy.  Instead I struggled and tried to handle everything for a few rocky, push/crash years before I finally understood how damaging all the stress was in addition to my physical version of ME/CFS.

 
So today, I make use of my hard won ME/CFS knowledge about stress when I deal with stressors as a healthy person.  I do what I CAN do to move my life along and I allow myself some serious slack about all the rest of it – I let things go.  How do you deal with the stress as you struggle with ME/CFS?  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 Progress - Look How Far You've Come

6/7/2022

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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, 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 Optimism – Spring Lift

3/22/2022

2 Comments

 
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OK, if you haven’t already guessed, I’m an optimist.  And yes, our type can get on peoples nerves when we’re too upbeat.  Not to say that optimists don’t have their down times.  I’ve had many.  Some of those darkest times for me were when I was bedridden with ME/CFS.  A disease as cruel as ME/CFS plays games with your mind, your psyche and your emotions.  The worst of it for me was that I became someone whom I didn’t recognize.  It began to erode my sense of self and my self esteem as well as my physical health.
 
What I took away from that dark place was the knowledge that this sick ME/CFS person was not the full definition of who I was and who I intended to be again.  It became a tool – a negative model of what I rejected.  I used it as a springboard from which to move upward again.  It renewed my commitment to regain my health – one small step at a time.  And each step was a little further away from those lowest points.
 
Did I do this after my first serious depression?  Of course not!  Type A personalities are quite certain of their methods and need to be clubbed a bit before they admit to being wrong.  But after a few low episodes, the optimist blessedly took control and I finally began the slow yet steady ascent back to health.

 
How to you handle lows?  Can you call on your optimist to move you upward again?  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 Optimism – Brighter Days

3/16/2021

2 Comments

 
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It happens to me every year around the middle of March.  Although I don’t see the signs of change in myself yet, one of my window plants catches my notice.  There’s a new vibrancy in its color or maybe even a tiny sprout where a dead leaf has been dropped.  Something triggers my attentiveness and before I’ve cognitively made the connection, I’m trimming, repotting and fertilizing all my plants.
 
What my plants have all been responding to, and what I’m also caught up in, are the longer days with brighter light streaming in my windows.  And I think back to my ME/CFS days and remember how hard it was day after day, week after week and month after month to keep my spirits up.  To remember my resolve to keep to the protocol, to allow myself the space to heal, and most importantly to cut myself the mental slack I needed.  The only time I didn’t need to be intentional about being upbeat was when the light began to get noticeably brighter at this time of year.  There’s a reaction to the increasing daylight that we experience on a cellular level.  I’m sure there are reams of scientific studies that have investigated this response but I don’t need to read them.  My sense of renewal and optimism are palpable.  And during my ME/CFS struggle, it was natural to see this NOT as the marking of another year of this cruel illness, but as the beginning of the year when my progress would get me to the next health plateau – the next stage of recovery.

 
I’m hoping that you are able to harness this brighter light and natural source of anticipation to carry you successfully along your path back to wellness.  Please COMMENT 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 Choices - The Holiday Bustle

12/8/2020

2 Comments

 
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We are all struggling with the pandemic caused by Covid-19.  For many, the virus has touched them directly, either through illness of loved ones, even death, or being at daily risk in an essential job.  For many, the economic hardships are threatening the survival of their families.  For many, the separation from loved ones is causing emotional and mental health problems, especially for our isolated elderly.  We are all trying to make sense of the conditions of the pandemic which have become the new normal.
 
And now, we are in the midst of the holidays which are usually a blur of activities in addition to the normal work and family commitments.  But this year, we are being asked to forgo much of it.  To stay in our limited circles in order to stop the spread of the virus.  To ease up the burden on our hospitals, to even save lives.
 
For those of us who have spent many holiday seasons struggling with ME/CFS, this request isn’t as hard to accept.  We get the pace that necessitates staying home.  We understand the sadness of isolation.  We have lived with forgoing much of the holidays.
 
This year, everyone is in a similar place for a completely different reason.  And although Zoom is getting old, it is a way to connect that we didn’t have in the past.

 
How are you planning to spend the holidays?  What are you paring back?  What will you happily forego from the holiday hustle and bustle list?  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 Attitude – Find Thankfulness

11/24/2020

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When I sat down to blog about Thanksgiving, I looked at what I had written last year.  I can’t 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.

 
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

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ME/CFS Attitude – What Others Say

9/22/2020

0 Comments

 
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When you’re struggling with ME/CFS, it can be a daily challenge to keep your own negative attitudes in check.  It’s all too easy to fall into the trap of wasting precious energy grinding about the things you can’t do, the thoughts you can’t keep straight and the important people in your life for whom you can’t be present.
 
It becomes even more challenging when you have to deal with the negative attitudes and insensitive comments of others.  One group says ‘you look OK to me’.  Then there are the ‘doubters’ who look at you as if you’re either physically lazy or mentally weak.  And then you face the curious crowd who seem interested in your illness only to the extent that they want to tell you about themselves or their sick friend.  It’s hard to know what to say without being irritated (only to confirm their assessment of your mental weakness) or rude which can alienate people whom you otherwise value in your life.
 
Fortunately for most, there are a few steadfast supporters, family members or friends, who get it and want to support your path back to health in whatever way they can.  And even these caring people can say the most insensitive things at times.  When I heard these comments, I donned my writer’s thick skin which I acquired as the result of many tough critiques.

 
What do you say when people make insensitive comments?  Do you react at all?  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 Lost Opportunities? – Just Postponed

8/11/2020

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A few summers ago, I spent a weekend with my niece and her young family at the lake.  My grandniece was three and was so much like my daughter was at that age – the bright smile and giggly laugh.  The difference is that I could play with her, dance with her and even pick her up.  When my daughter was a baby, I was in the depths of ME/CFS and couldn’t hold a glass of water let alone a fifteen pound baby.  I missed my daughters’ time as a baby and toddler.  Even when she was three, I was still unable to pick her up or do active play with her.
 
Did I miss out on an experience that I can never get back?  One could look at it that way.  And of course, I can’t get it back with my daughter.  But spending time with my grandniece was such a wonderful gift.  It was like recovering that lost experience.  And my daughter was there too.  She had just turned twenty-two.  It was a joy to see her holding her cousin on her hip and playing with her.
 
If I had tried to ‘do it all’ with my daughter, I know that I would still be struggling with ME/CFS.  It had such a profound hold on me that it took dedicated focus, to the exclusion of all else, to get well - even the joys of my daughters’ babyhood.  I did find ways to enjoy her and be her Mom but they needed to be energetically limited.  And I would do it the same again because now, and for the last eighteen years, I’ve been a full participant in my life, her life and the lives of all my loved ones.  So now I plan to see my grandniece as much as possible and revel in this new opportunity to recover something that was just postponed.

 
Are you balancing choices that might be missed opportunities?  Are you planning ways to recover them later?  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 Crash Triggers – What Do You Avoid?

7/21/2020

4 Comments

 
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The last few days have been hot and muggy in New England.  Summer is definitely here.  Over the weekend we were doing some yard work and were working up a sweat.  I commented that I wanted to go for a swim and my son remarked that I don’t swim.  I only float.  From his perspective, it was true.  My version of swimming is mostly with flotation – usually a noodle.  And I definitely don’t swim strokes over any distance.  But it hasn’t always been this way.

Before I struggled with ME/CFS, I swam laps in a pool every day at lunch or early in the morning if my schedule allowed.  Then came ME/CFS and all that went away.  Skip forward several years to when I was finally following the protocol and getting better.  I was avoiding push/crash cycles and feeling stronger each month.  Then I got the bright idea to try swimming again - major crash.  More time passed and I was back on track and feeling stronger.  Yes, I tried swimming again – another crash.  Full disclosure, I did this three times.  What was I thinking?  I never tried to swim again.  Even after I climbed Kilimanjaro, I was afraid to try swimming again.


My brain is now hard wired to avoid swimming.  Even though it makes no sense, somewhere inside me I still fear that swimming will trigger an ME/CFS crash.  I used to think I was crazy for still thinking this but I came to realize that instinct is important in survival and that I’m not much of a gambler.  What crash triggers have you learned?  What do you avoid?  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

ME/CFS Emotions - Droughts and Deluges

6/30/2020

2 Comments

 
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Early summer weather in New England can vary dramatically day to day.  This year is no exception.  The normal spring rains which enable the flowering of bulbs and perennials have been alternating with oppressive dry summer like heat waves.  Cold heavy rain for days followed by sun baked days approaching 95 degrees.  Last week the weather forecasters were a buzz about the storms moving up the eastern seaboard laden with needed water.  As the front got closer, things shifted to warnings about flooding and washouts.  And of course I began to think about the constant emotional peaks and valleys I experienced when I was struggling with ME/CFS.
 
As with all emotions that we actively fight to contain, they are held at bay by intentional shoring up with periods of overspills which always seem to be triggered unexpectedly.  The cruelty of ME/CFS only serves to amplify the intensity of these highs and lows.  My first year was full of frustration with the medical community that labeled me as a head case.  With few exceptions I was looked upon as ‘mentally weak’ and in need of therapy.  After a period of permitting that negativity to cling to me, I finally rejected it.  But I was still left with a pattern of extremes where sometimes the skies would dump a deluge of emotions and I would struggle to tread water.  After climbing out of that, I would experience a period of emotional drought when I could stay focused on the protocol and the slow but observable progress toward getting well again.

 
This focus helped me to eventually steer away from emotional lows and to avoid riding the drought and deluge roller coaster.  How do you shore yourself up?  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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