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ME/CFS Approach – Time to Re-evaluate

9/2/2014

6 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, the summer wasn’t that much different.  It was, for the most part, more of the same ‘dealing with ME/CFS’ 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, 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 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 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?  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.  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 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

6 Comments
Grace Liggett link
9/4/2014 02:58:22 pm

Hi there. I did a guest blog a while back… I just wanted to report that I am now pretty much 100% recovered. I would love to share a hopeful story with anyone battling chronic illness. My blog is: http://staysoft.wordpress.com

My heart goes out to all of you.

Reply
Tim Boland
9/4/2014 05:06:44 pm

This past summer has felt, more than other summers, like the one where I have re-evaluated and decided that, as Buddha said ‘the greatest happiness is health’. I was becoming acclimated to having CFS, I guess resigning myself in a sense, to having a certain kind of life and perhaps catching up on many things left undone.

I had something dreadful happen. I have a cabin here in Idaho, I had trusted someone to turn down the heaters to a reasonable level after I left them turned on too high, while in a rush to leave last autumn. He did not do as I asked. As it is so much drier here than in Seattle where I live in winter time, the constant heat and dryness did some damage to some large beams in the home. Very disheartening.

But I decided that I wasn’t going to allow it to ruin my summer or my health. I also decided that I don’t want to just settle for being ok. Part of it too is that both of my older brothers have significant health problems, one almost died earlier this year, the other walking only with help of a walker. And I realized that though I suffer as all of us do who have this illness, I am able to walk and do so about a half mile a day, I live in a beautiful area near a river, there is abundant wildlife.

I know I am not ‘guaranteed’ that I will become better, but last night I had another special happening, as I lay in bed going to sleep, I was able to relax my muscles more deeply than in a long time, I could feel how very good it feels when parts of me are feeling more normal, even rubbing the cool surface of the pillow felt wonderful .. And for a little while, almost no pain at all.

I feel part of this is believing that I can become better, I am doing much better with my health journal. I am seeing what is working. I am seeing when I overdo, though it is hard to give up not overdoing. I can see too that this is a most arduous journey. Thank you Martha for sharing yours, as you blazed a trail which helps to show the way. I am coming to see too that only someone who has had a serious illness can truly understand what we feel. To be able to share, to feel understanding, it helps greatly.

Reply
Martha
9/5/2014 01:59:19 am

I enjoyed reading about your two experiences that brought new focus to your commitment to be well again - Observing the importance of health through your brothers and getting results from keeping a health journal. For many, myself included, it takes these types of 'moments' to inspire true change. We're here to support you. Many thanks for your heartfelt sharing Tim!

Reply
Donna
9/6/2014 04:01:04 am

That is very uplifting, Tim!! Thank you! Early this year my doctor ordered a stool sample test. When the results were in, he began adding probiotics and enzymes that were low or missing, slowly, one at a time. In early March I began faithfully keeping a daily health log as you suggested, Martha. There was an absence of short chain fatty acids; so in late March I began to take Sodium Butyrate. After a few days I began to experience some rather bizarre symptoms and phoned my doctor. Hmmm, in very rare cases Sodium Butyrate can re-activate a latent herpes virus. After more testing it was determined I had an active Epstein-Barr virus in addition to my normal CFS. As my immune system with the help of anti-virals is doing its best to fight it, it has become even more important to be a "patient." My progress has been so slow that it didn't seem like progress at all. Until I looked back through my health log and compared Spring to late Summer! There has been progress! We are continuing to do more studies on my immune system during this time which may be pointing toward my root cause and a new treatment experiment. Like Tim, I want to believe that my condition will improve. and my life will be more normal. However, I often find myself walking a tightrope between accepting life as it is now for my sanity and believing I can have a normal life. I guess in a way I fear hope because I've put my faith in different treatments that we have tried and have been devastated when the treatments failed.

Reply
Martha
9/6/2014 05:01:58 pm

It's great that you're seeing progress Donna! And pleased that your health log is giving you insights over a period of time. I completely understand your tightrope walk. It''s difficult to find the right balance between hope for a full recovery and the reality of our present situation. We need to protect our sanity while we struggle with ME/CFS. As you find each piece to the puzzle of your version of ME/CFS, continue to built on each one. I honestly believe that no one treatment will be the answer. It's a combination of many treatments together that break the cycle of ME/CFS.

Reply
Tim Boland
9/7/2014 06:58:03 pm

I admire how you continue to work with your illness, Donna. I find myself alternately elated on some days when I am feeling better, which often coincides with sleeping well the night before. Then some days I don't feel as well and it is very difficult for me to accept. As Martha says, it is a cruel illness. I avoid using the term 'disease' because that sounds like something I may get stuck with, so I tend toward the description of a syndrome and hope like you that over time, with gradual incremental improvements, I will be better ... hopefully even all better.

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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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