Invisable Illness, Fibromyalgia, CFS, and Keeping a Journal; Step One

Hi Peers!

I am going to outline my suggested first step in keeping a hand written journal to help identify your triggers (what increases or decreases your pain levels), your emotions throughout each day, what you did that day, how family members assisted you, how family or friends created a negative reaction in you or a positive reaction, your sleep, your pain levels throughout the day, your cycle of emotions when first diagnosed (and after if you are still cycling through the stages of grief) and more. In my everyday Google search, I came across this free app to track pain and more on another Fibro and Migraine suffers blog! I must say that in all the blogs I have read, this woman is really great; I would advise following her work as it is similar to mine, just more detailed. Some may like that, some may not.

I am currently creating an easy to follow plan for invisible illness syndrome survivors to use. A lot of this blog will be recreated and put together into this plan with additional features. One item I keep returning to in my posts is how important it is to keep a journal. It is extremely vital in the early months/years, but can be useful for the rest of our days. I have touched on this briefly in the context of work and activities of daily living (household chores, shopping) but would like to start showing you a more concrete way to begin.

Step 1: Buy a journal. It can be a used school journal, a dollar store or drug store item, an office store school notebook, or a daily reminder book that you change the names of the sections to address each item as needed. It would be helpful if there was a way to keep print outs in it inside a sleeve on the side, but don’t get a large bulky item as we don’t tend to do well with large, heavy items, or too much information overload.

Step 2: Start your journal simply. Pick a time when you have completed your morning chores and have ten minutes to write. Create a Section devoted to “Mornings”.  Add subsections later, first just write freely; don’t get bogged down by trying to be perfect. This is for you, no one else is reading it so perfection is not needed.  After you have written general feelings down, start here: a) Think back to your sleep the night before and write down on a scale of 1-10 how well you slept and how many hours in a row. b) How did you feel when you woke up? c) What did you do for your morning chores? Write down each one and rate your pain during and after. d) Rate your pain now.  Always use the simple scale of 1-10 when rating anything.

That is all. Do not continue to do more in your journal for at least two weeks. If you want to add notes in your “morning” section, that is fine but again, do not get expansive. Then the whole process may backfire and actually cause you to start feeling more pain from using your hands to hold the pencil; yes, seriously. One note you may wish to write, and it is important later on, is what medication, if any, you needed to take. Or what helped you to decrease your pain that morning and what increased it.

More later

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Advisor


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