© 2012 TSM
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 stare 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-scan format.
What kind of record do you keep? What information has proven invaluable? Please COMMENT or Send in your thoughts and I’ll post them. You can use the Contact Form or send an email to Martha at DefeatCFS dot net.
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha
© 2011 TSM
So what kind of data do you collect? At the time I started recording data, I was housebound and only out of bed for a limited time each day. My first health record was a few lines on a note pad which contained a quick look at one day. Here’s an example:
Oct 14 Slept 10-7am 10mg Elavil 75mg Voltarin – twice
Ate and helped get kids out door
8-10 rested
10-12 slept
12 ate
1-3 rested
3-4 did some straightening
4-6 rested
6-7 kids and supper
Rested - everyone to bed
I have seen many examples of daily health records on-line – even specific to ME/CFS – which I felt were over the top with data. Some were one or two pages of data PER DAY! Honestly, unless you have sophisticated software to catalogue and analyze data, TOO MUCH data can be overwhelming. And that doesn’t compliment brain fog. For me, the entire idea behind taking the time to collect personal data was to give me something to help see the patterns and thus the successes and failures. By having just enough data focused on each day, I was able to flip back thru the pages and get the trends. Do NOT collect data in a narrative style as in sentences. You won’t be able to scan back thru in order to quickly glean the data points relative to what you’re trying to pattern. But if you have the energy, keeping a separate journal can be a good mental health practice.
A daily health record doesn’t have to be a precise log in the formal style of a white lab coat with a pocket protector. In the beginning, it can be spare. As you begin to use the data, other info points will become obvious to collect per the symptoms or strategies you select to focus on. What data do you collect? Please COMMENT or Send in your thoughts and I’ll post them. You can use the Contact Form or send an email to Martha at DefeatCFS dot net.
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha
© 2011 TSM
My last blog encouraged patients to pursue a thorough screening with a skilled diagnostician before accepting a diagnosis of CFS (fibro, ME, etc). If you’re sure that you have the right diagnosis, welcome to the waste basket.
From my perspective, the most important thing to remember when you receive the diagnosis of CFS is that you’ve been thrown into a category with thousands of other patients based on weak criteria. That CDC definition covers A LOT of territory. In other words, we don’t all have the same disease.
Decades from now, I’m sure that medical research will identify a few diseases that will be culled out of the CFS basket. Some of our currently known autoimmune diseases were formerly thrown in with CFS.
So you’ve got CFS but which version do you have? AND what if one of the diseases in the basket presents differently based on the individual patient’s underlying genetics and complicating conditions? That’s a lot of variables in play.
In my book, the first step in the protocol is – Understand Your Version of CFS. You can read well researched articles on CFS all day long which discuss its possible causes/treatments/solutions but you won’t know if any of it applies to you unless you have a solid reference point to yourself. The strategy is to generate real data - HARD data specific to you.
I can already hear the groans coming from readers. The list of ‘must dos’ for a CFS patient is already overwhelming and impossible most days. It’s ridiculous to think that a patient could take on another chore. And that’s a fair perspective. When I was sick, I felt the same way. But for almost two years, I wasn’t getting anywhere. And I had no real baseline to use to evaluate my progress or decline. And please don’t think that you can trust your impaired CFS memory to recall how you’ve been doing for the past week, let alone a month or a year.
We all know that the definition of insanity is doing the same thing over and over again and expecting different results. The day that I accepted that my ‘going nowhere but down’ path wasn’t going to cut it for the rest of my life, I started writing things down. So collect data every day. Day by day. Boringly, day by day. Treat yourself like a lab rat – a case study of one. As the data accumulates, you’ll begin to see what your version of CFS looks like (more on that in future blogs).
So what kind of data do you collect? If you’ve been collecting data that was helpful to you, please COMMENT or send your ideas in and I’ll post them. You can use the Contact Form or send an email to Martha at DefeatCFS dot net.
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha
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