Blog Archives

Personal Data - What To Collect

9/27/2011

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

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Recovery Opinions – Some More Hopeful Than Others

9/20/2011

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Last weeks blog triggered e-mails from patients who were firmly in either the ‘can’ or ‘can’t’ recover camps. As one might guess, most of the opinions seemed to be related to whether or not each had been able to recover. Laura Hillenbrand was mentioned frequently by the ‘can’t’ camp. Here’s a link to her article about her illness. http://www.cfids-cab.org/MESA/Hillenbrand.html Leigh Hatcher was a favorite of the ‘can’ camp. Here’s a link to his website. http://www.notcrazy.net/

And then there was the rest, fence sitters who were hopeful and wanted recovery to be possible.

For me, I keep coming back to what I feel is so unfair about this ME/CFS diagnosis. The fact the even though thousands of patients get this label, they actually don’t all have the same disease. So using the same protocol and approach, two patients can have completely different outcomes. Or one has great success and the other minimal improvement. Yes, I believe that ME/CFS patients can recover. Can they all recover using the same treatment? No. Can they recover using the same strategies? Call me crazy but my answer is yes.

My training as a health professional drilled into me two things: first, despite all the marvelous progress that medicine had made over the last century, we still only know and understand a small portion of the intricacies of the human body. Second, the way that we learn things is to collect data, hypothesize, test, evaluate and then collect more data, etc.

My next blog will focus on personal data collection (yes, I keep harping on this) and successful strategies. Have you developed any strategies that work for you? 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

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Opposite Viewpoints – It’s a Wide Waste Basket

9/13/2011

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I recently received two diametrically opposed e-mails on the same day. Both were written from the heart and came from caring, passionate people who have been dealing with ME/CFS for way too long.

The first was from a patient who has been sick for decades. Yes, decades. I can’t even imagine where or how I would be after dealing with ME/CFS that long… She related her steadfast struggle to regain her health trying every promising treatment from the reasonable to the absurd. At this point, she is managing to live a somewhat productive but restricted life with push/crash cycles and wrote to express her objection to my viewpoint that “you don’t have to live with it”. Personally, she has never met anyone who has recovered and feels that it is cruel of me to mislead patients into thinking that they can recover. I heard her frustration.

The second was from a former patient who was inspired by my book. Yes, former. Like me she had been sick for about four years and like the first patient above, also had worked steadfastly to regain her health and recover from ME/CFS. Now healthy, she was feeling the desire to “give back” to the CFS community and talk about her recovery. But she was disheartened by the number of ‘lifer’ blogs and forums on the internet where patients were insistent about the incurable nature of ME/CFS and found the negativity to be a turnoff. I heard her frustration too.

Both of these viewpoints, and all the perspectives in between, need to be expressed and heard. I’m hopeful that we can be part of that conversation and in the process contribute to some positive outcomes. What’s your take on recovery from ME/CFS? 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

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Patterns - Are They Obvious?

9/6/2011

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For many, Labor Day is the gateway through which we return to familiar patterns after the long warm days of summer. Hopefully, we’ve spent some time in the outdoors and had a break or two from the norm. If you’re struggling with ME/CFS, the norm is the inability to function as a healthy person. So the long days of summer may have only served to put an exclamation point on your disability and frustration which could have resulted in a push-relapse cycle…

As we return to normal patterns, it is obviously subjective. What a typical day looks like for one ME/CFS patient, can be completely different for another. But as each patient looks back over the past year, it would be wonderful to see improved health since last September and disappointing to feel worse. Which applies to you or those you care for? How do you get on the improved track?

For some, patterns are the key. Unique patterns for each patient. Specific to each patient and situation. The key to recognizing patterns is keeping a detailed health log. As resistant as some may be to this idea, it is a focused way to get a handle on your unique version of this wastebasket diagnosis of ME/CFS. A patient’s memory is impaired and often useless for holding the train of thought during a conversation. How could the same person hold a week of patterns in his/her head? And then have the recall to see progress over a year?

If you are a patient and you are not keeping a daily health record, start today. Start right now. Get a pad of paper, a spiral notebook, the back of an envelope – just start writing down a brief summary of your day. If you have been keeping a record, what seems to be the most valuable information in your record? What is missing and would help to know? 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

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Personal Data - What To Collect

Recovery Opinions – Some More Hopeful Than Others

Opposite Viewpoints – It’s a Wide Waste Basket

Patterns - Are They Obvious?

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Personal Data - What To Collect

Recovery Opinions – Some More Hopeful Than Others

Opposite Viewpoints – It’s a Wide Waste Basket

Patterns - Are They Obvious?

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