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ME/CFS/SEID Approach – Time to Re-evaluate

9/6/2016

2 Comments

 
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As the kids go back to school, a lot of people return to a more normal pattern of life and activities.  The summer slips away and we’re looking toward fall and the changing of the seasons.  But for many people who are struggling with ME/CFS/SEID, the summer wasn’t that much different.  It was, for the most part, more of the same ‘dealing with ME/CFS/SEID’ issues.  For many, the summer provides a frustrating reminder of what we can’t do as we watch others plunge into all the outdoor summer activities.

When I was first struggling with ME/CFS/SEID, summer was a cruel exclamation point on my failure to return to a healthy life.  It seemed like an endless time of other peoples’ leisure pursuits that were beyond my participation.  Well, the good news is that it’s over.  So as others trend back to their regular schedules and plans, it’s a good time for those struggling with ME/CFS/SEID to do the same.

As we often hear, same approach, same result.  Now is a good time to step back and evaluate your personal approach to dealing with your version of ME/CFS/SEID and how it’s been working.  For some, the default approach is day-to-day with no formal plan.  For others, the approach is more structured.  Whatever you’ve been doing, take time to evaluate where you are now compared with three months ago, six months ago or last year at this time.  Are you healthier?  About the same?  Somewhat worse?  Have you been consistent with what you want to be doing to manage your ME/CFS/SEID?  Has your approached worked?  Do you need to make changes?

This process can be frustrating or inspirational.  For me, honestly, I failed in my first few attempts to shift my approach to ME/CFS/SEID.  But after a few years of getting absolutely nowhere – actually worse which culminated in a crippling relapse – I had a moment of realization.  If I ever wanted to get out of the ME/CFS/SEID hole, first I had to build a ladder and then I had to climb it – one rung at a time.

How would you evaluate the approach you’ve been using?  What changes are you planning to make?  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
Tim Boland
9/9/2016 02:01:23 am

I was struck today by a comment by a woman made about a YouTube video, saying she was now 53 years old, and where had the time gone? Whether healthy or ill, there is a tendency to drift, to just kind of aimlessly move along, one day almost seamlessly blending into the next.

About a year ago, I was visiting a Feldenkrais practitioner and mentioned a similar comment that someone made, that some people seem asleep even during their waking hours. Mike became very animated and said 'that's right', that many people are not even truly awake during their daytime hours, and he said 'you are awake'! I was angry, frustrated and very much plugged into what was happening with me and my body.

I had a real flurry of work during this past year, things I had to do if I wanted to survive financially. But I have been feeling more resentful as the days passed, each day bringing more of the same, more issues, more work. Finally in the past couple of weeks, I have had a reprieve.

And what have I been doing. A great deal of resting, falling asleep while in my recliner, more self reflection on how good it feels not to be so busy. How like Martha I really don't like that life style much at all anymore, of being so busy and being driven. What is fun about constantly working, especially when my body is hurting and crying out for me to pay attention?

I don't have all the answers for myself, but I did have this realization the other day. If I am enjoying a tv show or movie, if I am enjoying something I am doing online or simply snoozing, I can allow myself to stop punishing myself, being so regretful about 'what I could have done' and allow myself to relax. I am taking longer times with the phone turned off, figuring that if something is truly urgent, certainly they will leave a message. I know it is not easy when dealing with this cruel illness, but I know there is a real truth there. We don’t have to be miserable ever moment.

Reply
Martha
9/9/2016 07:31:53 am

Of late, I have been focused on time. How much of it has already passed and, more importantly, how am I going to spend the rest of it? I ask myself this question almost daily. So I'm right there with you Tim. I am wide awake. And truthfully, I like it better than before. But now I'm responsible for what I'm doing with my time. Yes, this is a cruel disease and we need to be present to it if we hope to be well again. You've spent time building the ladder and you've been climbing it one rung at a time. We're right there with you. Thanks Tim for your always heartfelt comments.

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    Hello,  I'm
    Martha Kilcoyne

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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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