...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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SEID/CFS Recovery – A Mine Field of Variables

6/30/2015

2 Comments

 
Picture© 2015 TSM
If everyone who was suffering with SEID/CFS were to write down all of the variables that affect them, it would be a long list.  Life in general challenges us but add to that all of the knowns and unknowns of SEID/CFS and it can be overwhelming.  During the time when I was bedridden with SEID/CFS, I must admit that for a good number of my waking hours each day, I cranked over that list.  I allowed it to feed on the precious little energy that I had and erode my will to get well.

It was when I finally jettisoned the list and began to focus on one or two variables at a time that my health started to improve.  Instead of wandering through the entire mine field where it was certain that one of them would blow up, I carved out smaller areas with a limited scope.  Usually this would include a shorter timeframe to focus on and only a couple of life’s issues to act on.  It didn’t always work but most of the time, it allowed me to intentionally focus the energy I had on things that were realistically within my reach. 

How do you keep yourself within a realistic window?  What strategies have worked 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

SEID/CFS Double Life – Two Identities

6/23/2015

4 Comments

 
Picture© 2015 TSM
When I was at my lowest point suffering with SEID/CFS, it seemed like I had only one identity – a bedridden sick person.  As I slowly began to regain some functioning, I would have brief periods of experiencing a different identity – a normal healthy person.  This happened when I had a conversation about something I was passionate about and I could keep focused for ten minutes or maybe even half an hour.  During that time, I forgot about SEID/CFS.  I stepped out of that label and, for a while, became free of it.  Then, of course, it would end and I would ‘remember’ my situation.

As I grew healthier, I got to the point where half the time, I could actually participate in some normal healthy person activities and relish for a while in forgetting about SEID/CFS and its cruelty.  But it would end and I would have to ‘remember’ again.  Straddling both worlds of sick and healthy was not only a physical challenge in terms of pacing, pacing and more pacing.  It was a mental marathon ‘double life’ of moving back and forth between these two identities.  Of learning to appreciate and revel in the times of acting and feeling like a healthy person and then handling the let down of remembering the reality of my situation.  I worked hard at not letting the upside create an even lower downside.  I kept my eyes focused on shifting the percentages – slowly and steadily – to more and more normal healthy person and less and less sick person.

How do you handle the Double Life of sick and healthy?  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

4 Comments

SEID/CFS Humor – Sometimes It Helps

6/16/2015

4 Comments

 
Picture© 2015 SNL
Over the years I’ve been able to develop a thick skin when it comes to hurtful comments from others about my struggle with SEID/CFS.  Dismissiveness or even subtle innuendoes suggesting that my illness was a mental health problem are a reality and I’ve come to deal with them as part of the package of SEID/CFS.  But recently, someone whom I thought ‘got it’, belittled my illness with a wave of her hand referring to it as a brief bout with severe depression so just get over it.  REALLY!?!

I’ve now got Seth and Amy of SNL zinging their Weekend Update one liners across the video of my mind.  Saying that SEID/CFS sufferers are only severely depressed is like saying that ulcers can be cured by thinking pretty thoughts.  REALLY!?!  If SEID/CFS patients are mental health cases then Aids is a lifestyle choice.  REALLY!?!  If you think that Prozac is the cure for SEID/CFS, then I’ve got a bottle of snake oil that will cure your condescending attitude.  REALLY!?!

Sometimes humor is the best medicine.  How do you use 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

4 Comments

SEID/CFS Struggle – Don’t Be a Victim

6/9/2015

2 Comments

 
Picture© 2015 TSM
When I first contracted SEID/CFS, I thought my illness would be short lived.  It came on like the flu, it felt like the flu and I was sure that after a couple awful weeks, I would recover just like all the other flus I’d had.  Lots of people around me were suffering with the same flu.  Many people were laid up for a couple weeks just like me.  But as I watched them recover and go back to work and their lives, I didn’t get better.  And over time, as I attempted to get my life back to normal, I got worse.

It was easy at the time to question, “How come I’m not getting any better?”  “Why did this happen to me and not anybody else?”  As time went by, after many visits to different doctors, without getting any answers, I began to feel like the victim of a terrible hoax.  I kept thinking that any day now, I’ll wake up and the nightmare would be over.

I developed a perspective that I had nothing to do with getting sick with SEID/CFS and I had no means within my control to get better.  And I admit that I was feeling that way for a long time.  I was trapped in the scenario that I was a victim and that I had no options other than suffering.  My future seemed outside of my control.

Fortunately there was a quiet yet consistent voice inside of me that kept saying. “This isn’t you.”  And it was right.  I could no more give up complete control of my life than I could quit breathing.  There had to be some part of this nightmare that I could work with – that I could control.  Something that I could personally take on in order to get better.

And that was the beginning of an attitude shift that put me on the path to wellness.  What parts of your struggle with SEID/CFS do you control?  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 Depression – Rainy Days Made Me Happy

6/2/2015

4 Comments

 
Picture
It’s a cold rainy day in New England after several hot summery days.  For the second day of June one might expect something different.  But I’ve lived here my whole life and one can always count on the weather to change moment to moment.  So today, as I settled in for a less active indoor day, I started thinking about my struggle with SEID/CFS and those rainy days.  One might think that like some people, rainy days would have seemed dreary and sad back then.  But the opposite was true.  Rainy days made me very happy.

Why?  When I was struggling with SEID/CFS, sunny warm days made me miserable.  I wanted so much to be out and going about my life.  And lovely days were a tough reminder that I was too ill to participate in my own life – in anyone’s life.  Those days seemed twice as long as normal.  They dragged and dragged and dragged on some more.  Those days were depressing.

I must admit, somewhat ashamed, that cold rainy days made me feel like other people might have their days limited as mine were.  Not with the physical symptoms of SEID/CFS but the limitations on mobility.  The restriction of activity and possibly some of the isolation.  I felt like other people were stuck in it with me.  A sort of warped sense of misery loves company.  And this made me happy.  OK, not one of my best moments.

As I began to understand that I needed to get off the SEID/CFS roller coaster and focus on a real recovery plan, this weather influenced attitude began to change.  My daily approach to healing became a matter of choice as I was no longer a victim of SEID/CFS but rather someone who was on an intentional recovery path.  Nowadays when I’m trapped indoors on cold rainy days, I like to make the best of it and imagine I have lots of company.  And a nap is nice too.  How do you relate to cold rainy 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


4 Comments
    Picture
    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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