...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Repetition – Keep Your Sanity

2/18/2014

3 Comments

 
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This winter in New England has seen a lot of snow.  It hasn’t been two or three big storms.  It’s been a long conga line of smaller storms coming every few days.  Day after day and week after week.  And it’s only February.  Lots of
shoveling, digging out cars and slippery driving.  And inevitably when I get into drawn out repetitive situations, I think about my struggle with ME/CFS.

When I finally quit riding the roller coaster after two brutal years and settled into the protocol, it was a long, repetitive, frustrating path.  Whenever I looked forward, the repetition seemed to spread out endlessly before me.  Like this long winter, it didn’t seem like it would ever end.  I had to find the courage to settle in.  I needed to take it a day at a time.  I needed to stick with the recovery plan and work it every day. Honestly, I couldn’t think about how slow the pace was because it drove me crazy.  Much like this winter, I don’t think about how much more snow I will shovel. I take it flake by flake. 
Right now, there’s a gorgeous sparkly snow globe swirling outside my windows.


My best days of dealing with the slow repetitious pace were when I looked over my health log and saw the real progress.  I was slowly making my way back to full health.  And the proof was right there written in black and white.  It was a balm for my sanity. 
Are you on the slow, repetitious path that the protocol requires? What helps you stay sane?  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
Donna
2/18/2014 09:40:26 pm

How serendipitous! A few day ago I googled, "staying sane with cfs." (Spyware on my computer, Martha?) Just kidding! One of the links took me a chat where sufferers were playing one-upmanship on how horrible their lives were. It was very sad, and perhaps, the venting was somehow therapeutic for them. For me, it triggered my personal dark hole of despair. My doctor warned me long ago to stay away from support groups. I think what I experienced was the reason for that advice.
I try to stay positive. I strive to be grateful. I'm just beginning to seriously practice a protocol, but something is missing. I'm keeping my eyes wide open while searching for the "something." The something would be passive and fit within my current limitations. It would give me some measure of accomplishment and a sense of time well spent. I would devote an hour or so a day to it. I wondered if any of the readers here had their "something." and would share it. Maybe it could help lead me to mine.

Reply
Martha
2/19/2014 12:17:51 am

I think you received good advice from your doctor. Unfortunately, most of the ME/CFS support groups that I have looked at from time to time are 'whining' zones. It's understandable given the cruelty of this disease but it doesn't make much sense given the need to stay upbeat through a long, steady recovery.
I completely get what you mean about finding that 'something'. For me, it was taking back the job of bill paying and money management which only took a few hours a week but it made me feel like I was contributing again. Thanks Donna! Great to hear your voice.

Reply
Tim Boland
2/24/2014 03:43:52 pm

I know what you mean about support groups, I had a similar experience when calling a national HQ for help and advice with my condition, only to have the woman who answered tell me all about her difficult life. After that, I really was depressed!

For me Donna, deciding just watching tv and having others help most of the time for most everything got to be too much. I discovered YouTube, which was not quite as well known at the time and made some very good friends. It has a wealth of so many different kinds of videos, from music to documentaries and nature. And I’ve made a good number of videos to share. A site I like even better now is uploadsociety.com, which is much more socially friendly and could use more ‘older’ (than 25!) users. Welcome :)

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    Hello,  I'm
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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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