...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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SEID/CFS Plan – Only Keep Your Successful Strategies

7/28/2015

4 Comments

 
Picture© 2015 TSM


I learned a new card game over the weekend with a specific deck that contained resource, action and reward cards.  The premise of the game was to start with a few cards and then slowly, through the gameplay, build a personal deck of select cards that you thought would be successful in winning the game.  On every turn you had to make choices about what to keep, what to acquire and what to aim for.  After playing three hands, of course I began to think about SEID/CFS and how I had used a similar plan to get well.

After struggling for almost two years, only getting worse, I finally decided that I needed a better plan than my daily ‘how do I feel today?’ approach with the hope that by some miracle I would walk away fully recovered.  FYI – I’ve never heard of this actually working for a SEID/CFS patient.  I decided that I needed a real plan.  One made up of a handful of strategies that had actually improved some aspect of my illness.  Over time I collected a record keeping strategy, a sleep strategy, a rest schedule strategy, a provider strategy, a nutrition strategy, a supplement strategy and a network for help strategy.  Each strategy alone wasn’t going to get me well by itself but as a complementary set of strategies I was able to not only make measureable progress but eventually return to full health.

In essence, I built a personal deck of strategies which I played each day much like the new card game I had learned albeit the stakes were much higher.  What strategies have worked for you and are in your personal SEID/CFS plan deck?  What strategies have you discarded?  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
Andreaa link
7/28/2015 03:54:45 pm

Hi Martha, I had been told by my country's Specialist in this area to pile salt into my diet to help retain fluid as there apparently tends to be an overall lack of body fluid in this illness. I tried that and it did not work so I don't use salt for that purpose. I have definitely found sugar can make me go high and then low, so do try to lessen it, but do have treats at times. I have found vitamin B12 injections to be of some benefit. The biggest enemies for me are emotional stress....not always possible to avoid. But that guarantees a flare if I do have stress. The other major factor for me is female hormones....feeling better when hormone levels are higher, worse when they're lower. Not emotionally better, but a high hormone level definitely feels like a type of 'morphine' to me. In this sense, I am very worried about all the changes that take place around menopause.

Reply
Martha
7/29/2015 09:20:10 am

Andrea, the salt thing was definitely one of my issues and combined with an ion cocktail (see further lessons - on the menu bar) was part of the solution for my version of SEID/CFS. Sugar, B12, stress and hormones are also part of the variables for many who struggle with SEID/CFS. For me, it was a matter of record keeping and digging for clues and patterns. We've all been lumped together but we don't all have the same disease. If you can get a few variables under control, that will give you a chance to unravel your version of this cruel disease. Thanks

Reply
Tim Boland
8/4/2015 09:38:26 am

Hello Martha and Andrea, when reading of your journeys, I am reminded that we are all part of one 'tribe'. It is helpful to read about what helps, what hinders. Stress for me too is a big trigger though as time passes, I am handling it better. For me it often translates to tighter muscles too, which then translates to more pain and achiness.

A good sleep helps enormously, as does taking breaks during the day, reclining in my easy chair and sometimes falling asleep.

Reply
Martha
8/4/2015 11:10:04 am

Tim, you seem to have relaxing down to a science! I just posted this weeks blog and I don't think you need to read it :) Thanks!

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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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