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ME/CFS Memory – Write It Down

10/14/2014

5 Comments

 
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As I age, my memory seems to fail me at unexpected times.  I can’t recall the name of a flower that I’ve know for a decade or the name of a street that I’ve driven a thousand times.  Recently, I couldn’t remember the name of a friend’s daughter and I wrestled with my memory to pull it up as I stood there with a blank look on my face.  And of course it reminded me of the brain fog I experienced daily when I struggled with ME/CFS.

During my ME/CFS days, I would be in conversation and the entire topic and my thoughts would slip away into an awkward silence.  Trying to pay bills or add up simple numbers was painstaking.  But most of all, I would loose track of entire days or weeks.  I couldn’t recall the simplest timelines.  And I struggled to get any sense of progress until I made the commitment to write it down.

 
Ok, I admit to having a mantra about keeping a Daily Record.  And it stems from the realization that it was my daily record that over time gave me the clues to My Version of ME/CFS.  I encourage everyone who is struggling with this cruel disease to faithfully keep a record of sleep, activities, rest periods, food and medications during the course of each day and night.  It takes about five minutes a day to write it down in a simple, easy-to-review format.

What kind of record do you keep?  What information has proven invaluable?  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

5 Comments
Donna
10/14/2014 11:20:31 pm

I keep a notebook noting my sleep, meals, any out of the ordinary symptoms or sensations, and sometimes I use it has an emotional outlet. I take a lot of supplements to support brain and bodily functions as tests have shown that I'm low in certain vitamins, enzymes or minerals, I note these and any prescription meds as well. Occasionally, the doctor will add or delete something, the notes can sometimes show any changes over a period of time. I sometimes can make suppositions due to my notes. I have just received an additional diagnosis of CVID to add to my CFS and Fibromyalgia diagnoses. I will be beginning Gamma Globulin Infusions soon, and I think my Health Log will be very valuable in noting any side effects and potential gains.

Reply
Martha
10/15/2014 12:33:49 am

Sounds solid. Thanks Donna!

Reply
Tim
10/17/2014 12:08:29 pm

I have a good feeling about this for you Donna, that being so attentive to what benefits you for body and mind will lead you progressively toward better health and recovery.

Reply
Tim Boland
10/17/2014 12:06:42 pm

I am being more faithful in maintaining a log, I also have a feelings journal as the feelings which come up in having this illness can be so affecting. I think another positive aspects of keeping a health journal too Martha is that it is keeping a goal in mind, the goal of wellness.

I have a question. On those days when you were feeling disheartened or depressed, what did you do for yourself to help get out of that state of mind?

I did something I am feeling happy about, a favorite old sitcom for me is Three's Company, so I ordered the first few seasons, just seeing how much fun they had, how funny those shows were, have lifted my spirits a lot the past couple of days.

Reply
Martha
10/17/2014 03:34:45 pm

ME/CFS is so cruel. And depression is part of the package. I had not experienced deep depression before I was struggling with ME/CFS so my initial reaction was that of fear. It truly scared me. But after I understood the pattern, I found three things that helped. First I allowed myself to feel a little self pity by acknowledging my deep frustration with this dis-ease. Then I got rid of the negative energy by venting my anger at my situation. Finally I would go back through my journal and see the improvement which filled me with the positive energy of hope. To avoid depression, I tried to do one thing each day that lifted me up - a phone call, a good article, a special food, music, etc. Find what works for you. Thanks Tim!

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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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