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ME/CFS Holidays – Gift to Yourself

12/17/2019

4 Comments

 
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It’s seven days to go until December 25th and we’re in the midst of many religious and cultural holiday observances.  Whatever you celebrate at this time of year, we’re getting to the thick of it and we’re feeling the constraints on time and energy to get it all done.  When I was struggling with ME/CFS, this was a critical decision time that determined how my holidays would play out.
 
Would I choose wisely and slow the pace down so I could feel reasonably well at the height of the holidays or would I keep pushing to the finish line?  In my early years of struggling with ME/CFS, it was always the latter.  No matter what good intensions I held, invariably I over did and was crashing thru the culmination of our holiday celebrations.  It wasn’t until I began to get a taste of feeling better that I understood the importance of stopping the rush of the holidays.   
 
This holiday season, the most important gift you give is the one to yourself.  The gift of letting go of most of the Fa La La and napping instead.  Watch a favorite movie.  Ask a friend to pick up a specific gift item or some groceries while they’re out doing their own shopping.  Order online.  Linger over a hot cup of afternoon tea.  Call your loved ones and let them know that you’re thinking of them and that you’re resting so you’ll be up for the holiday events.  The more you give yourself the gift of rest and reasonable pacing, you will actually be giving your family and friends the gift of a stronger and more participatory you during the holidays.

 
Are you giving yourself the gift of energy for the holidays?  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 my next posting after the New Year.  And consider being part of the conversation.
 
Wishing you and your loved ones a Healthy and Blessed Holiday,

In the New Year, Be Well Again,
Martha


4 Comments

ME/CFS Sleep Deprivation – Switch to Rejuvenating REM

5/8/2018

0 Comments

 
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Everyone experiences periods of lousy sleep.  It can be due to illness, disrupted schedules, emotional distress, worry, etc.  Eventually, if it goes on for too long, we start to feel sleep deprived.  If you’re struggling with ME/CFS, this can become status quo layered on an illness that already robs you of desperately needed deep sleep.  For ME/CFS patients, it’s imperative to create optimum opportunity for restful and rejuvenating sleep.

First, be sure that your sleeping environment is perfect for you.  Mattress, pillows and covers should be just right – Goldilocks style.  The degree of darkness vs. light and silence vs. sound need to suit you.  Do you share the bed with a partner or a pet?  Ensure that you have plenty of space and that no one disturbs you.

Second, you need to have a sleeping schedule that is adhered to religiously - no exceptions.  Plan your evenings and days around bed and naptimes.  Everything else should be secondary.  This sounds like it could be impossible but if you plan around it, it’s doable.  And it pays off.

Lastly, once you have a good environment and a regular schedule, all you need is to get to REM.  For me, this was elusive while I was struggling with ME/CFS until I worked with my doctor to select the right medications for me.  Pain was the main reason that I woke up frequently during the night so I took a combination pain reliever and muscle relaxant half an hour before bedtime.  Then we added a non-addictive sleep aid.  After a few weeks, I was starting to see some improvement.  After a few months, I could begin to feel the difference.  I was finally beginning to get some solid REM sleep for the first time in more than a year.


So how is your sleeping environment?  Do you keep religiously to a bedtime and rest schedule?  Do your sleep aids work for you?  How would you rate your quality/quantity of REM sleep?  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


0 Comments

ME/CFS Rest – Ease and Release

1/30/2018

3 Comments

 
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I’ve been 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


3 Comments

ME/CFS Holidays – Gift to Yourself

12/12/2017

2 Comments

 
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It’s thirteen days to go until December 25th and we’re in the midst of many religious and cultural holiday observances.  Whatever you celebrate at this time of year, we’re getting to the thick of it and we’re feeling the constraints on time and energy to get it all done.  When I was struggling with ME/CFS, this was a critical decision time that determined how my holidays would play out.
 
Would I choose wisely and slow the pace down so I could feel reasonably well at the height of the holidays or would I keep pushing to the finish line?  In my early years of struggling with ME/CFS, it was always the latter.  No matter what good intensions I held, invariably I over did and was crashing thru the culmination of our holiday celebrations.  It wasn’t until I began to get a taste of feeling better that I understood the importance of stopping the rush of the holidays.   
 
This holiday season, the most important gift you give is the one to yourself.  The gift of letting go of most of the Fa La La and napping instead.  Watch a favorite movie.  Ask a friend to pick up a specific gift item or some groceries while they’re out doing their own shopping.  Order online.  Linger over a hot cup of afternoon tea.  Call your loved ones and let them know that you’re thinking of them and that you’re resting so you’ll be up for the holiday events.  The more you give yourself the gift of rest and reasonable pacing, you will actually be giving your family and friends the gift of a stronger and more participatory you during the holidays.

 
Are you giving yourself the gift of energy for the holidays?  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 my next posting after the New Year.  And consider being part of the conversation.
 
Wishing you and your loved ones a Healthy and Blessed Holiday,

In the New Year, Be Well Again,
Martha


2 Comments

ME/CFS/SEID Pacing – Protect Part of Your Day

6/13/2017

2 Comments

 
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When you’re struggling to recover from ME/CFS/SEID, 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/SEID is not forgiving.  ME/CFS/SEID 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

ME/CFS/SEID Distractions – Stay on Plan

5/30/2017

0 Comments

 
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​I had a plan for the last two weeks but it didn’t play out the way I’d envisioned.  Honestly, I can’t remember how things got so off track.  Maybe I was trying to juggle too much or maybe it was the reality that too many variables were in play.  I was truly over ambitious.  Of course this reminded me of when I was struggling with ME/CFS/SEID and it took so long for me to finally get focused on the plan – the single focus plan.

During the beginning of my struggle, I was riding the rollercoaster of push/crash.  I had no consistent plan for managing my illness.  Each day was a question mark.  How was I going to do today?  How would I feel?  And this lack of planning only made me feel worse.  Then I finally understood that all the distractions of life – all of the activities – were keeping me from getting well again.  I needed to ignore the distractions and focus on saving my energy and using it with discretion.  I needed to stay with the plan.

So the warmer weather is fast approaching.  The summer will be filled with activities.  It will be a time that pushes our wellness plans to the limit.  What are your strategies for staying on plan?  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

0 Comments

ME/CFS/SEID Energy – Have a Savings Plan

1/17/2017

0 Comments

 
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I had to laugh out loud yesterday at the picture that accompanied an article I was reading about poor money habits for financial retirement planning.  There was an image of a pink piggy bank and a man with a hammer sneaking up behind contemplating a robbery.  The article pointed out that money needed to be regularly going into savings not out in order to retire successfully.  Of course it reminded me of when I was struggling with ME/CFS/SEID and in the beginning, I would spend, spend, and spend every ounce of energy I had in order to get through a day.  Then I would collapse because I had emptied myself of any reserve.  After some resting I would try to do it again having never really healed or regained any reserve.
 
It took me many bad cycles of spend and crash before I finally started to understand the need to build up a solid reserve of energy before an activity.  I had to flip the whole approach around so that first I built up my energy then I used some for a specific need.  But I stopped before I was fully spent and I rested again.  Overtime, the reserve built up until I had a deep well of energy to call upon when needed.  But I still made sure that I continued to regulate my activity so that as I began to get well again, I maintained the energy reserve.  So unlike the man with the hammer, I didn’t use up every drop of energy day to day.

 
Eventually my reserve was solid enough that true healing began and I was able to walk a path back to wellness.  How do you manage your energy reserves?  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

0 Comments

ME/CFS/SEID Self Care – Be Sick Be a Patient

11/15/2016

2 Comments

 
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My daughter recently had surgery and needed help when she was back home.  I had all I could do to convince her that I was going to take care of her.  She finally relented and started being a patient.  Of course, it reminded me of myself when I was struggling with ME/CFS/SEID.  For a long time, I fretted over the things that I wasn’t getting done, how I wasn’t contributing, how much of a slacker I was in taking care of my loved ones and my life.
 
When you’re struggling with a disease as cruel as ME/CFS/SEID, the coulda shoulda wouldas can weigh heavily on your mind.  You look like you’re ok.  Some days, for a while, you might actually feel like you’re ok.  And for the most part, the people around you don’t get what you’re going through.  So your tendency is to be inconsistent in your self care.  You crash when you have to.  You push when you think you can get away with it.  And you spend many days in between trying to squeeze as much as you can out of yourself.  And what does that get you? - Chronic ME/CFS/SEID.
 
It took me a long time to allow myself to be sick and to be a patient.  And even after I knew I needed to make self care my top priority, I still stumbled and struggled to justify what at times seemed to be so selfish.  But after I finally stayed true to being a patient, I began to regain my health in a significant way.

 
How do you stay true to managing your self care?  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

SEID/CFS Routine – Each and Every Day After Day

2/2/2016

2 Comments

 
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If I had to pick one word that would describe my successful return to health after struggling with SEID/CFS, it would be monotonous.  Daily record, energy patterns and attitude are close seconds but ultimately the best word is monotonous.  Did I mention monotonous?  It was SO monotonous.  Day after day monotonous.  Are you starting to feel it?  Tedious, lacking in variety, repetitious, monotonous.  The same routine every day.  Monotonous day after monotonous day.
 
At the depths of my struggle, this monotonous routine required me to take a two hour nap twice a day.  Full disclosure – I HATE naps.  I haven’t napped since I was a toddler.  Even then, I am told I was uncooperative during nap time.  For whatever reason, unless I am sick or just come off an all nighter, I am not tired during the day.  Daytime bed rest is like jail for me.  So my monotonous routine required monotonous bed rest.  Even if I wasn’t sleeping, I had to be in bed with my eyes closed.  Yeah, monotonous. 

 
Sometimes it seemed to take an eternity to get to the end of a day.  And what was my reward?  Bed rest.  Monotonous bed rest.  And as my energy started to return, it was even MORE monotonous still following the napping and resting routine.  But it worked.  It all paid off.  So as you study your patterns and find the clues to your version of SEID/CFS, find a way to manage the monotony of repetitious days.  How do you manage the monotony?  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

SEID/CFS Holidays – Gift to Yourself

12/15/2015

4 Comments

 
Picture© 2015 TSM
It’s a little more than a week to go until December 25th and we’re in the midst of many religious and cultural holiday observances.  Whatever you celebrate at this time of year, we’re in the thick of it and we’re feeling the constraints on time and energy to get it all done.  When I was struggling with SEID/CFS, this was a critical decision time that determined how my holidays would play out.
 
Would I choose wisely and slow the pace down so I could feel reasonably well at the height of the holidays or would I keep pushing to the finish line?  In my early years of struggling with SEID/CFS, it was always the latter.  No matter what good intensions I held, invariably I over did and was crashing thru the culmination of our holiday celebrations.  It wasn’t until I began to get a taste of feeling better that I understood the importance of stopping the rush of the holidays.   
 
This holiday season, the most important gift you give is the one to yourself.  The gift of letting go of most of the Fa La La and napping instead.  Watch a favorite movie.  Ask a friend to pick up a specific gift item or some groceries while they’re out doing their own shopping.  Order online.  Linger over a hot cup of afternoon tea.  Call your loved ones and let them know that you’re thinking of them and that you’re resting so you’ll be up for the holiday events.  The more you give yourself the gift of rest and reasonable pacing, you will actually be giving your family and friends the gift of a stronger and more participatory you during the holidays.
 

Are you giving yourself the gift of energy for the holidays?  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 my next posting after the New Year.  And consider being part of the conversation.
 
Wishing you and your loved ones a Healthy and Blessed Holiday,

In the New Year, Be Well Again,
 
Martha

4 Comments
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    Hello,  I'm
    Martha Kilcoyne

    Welcome
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    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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