September 4, 2009

• Conflicted

  I have previously expressed here the conflict I feel over revealing the signs and symptoms I experience daily from M.E.  The downside for me is that sometimes my writing about symptoms arouses pity or elicits alarmed injunctions to see a doctor. 

  I detest pity, think it is the next thing to contempt, and don’t feel I deserve it.  I am often reflexively ungracious in response to it.  Doctors, having done me more harm than good in this lifetime, are not high on my list of people to “see” when I don’t need to, especially when I am not feeling up to par.  I couldn’t afford it, even if I wanted and needed to see a doctor.  I have no insurance.

  On the other hand, my readers include ME-ites, both diagnosed and undiagnosed.  To the former, my openness about my signs and symptoms can bring some encouragement or consolation – and God knows we can all use all of that we can get.  To those whose signs and symptoms have gone undiagnosed or have been misdiagnosed, I might provide some real help.

  
  picture unrelated

  Most people who read my blog are acquainted with those attitudes, and I can often get away with mentioning symptoms without having to deal with the bullshit.  But Xanga [understatement alert!] is not Facebook.  On FB, a different (but overlapping) set of people see and read each of my little “stories,” and in general their attention spans are shorter and their reading is more superficial. 

  There is less continuity from one little “story” to the next, so nobody gets the whole story.  In that medium, I can’t blame anyone for coming in on a flareup in the middle and reacting with their reflexive pity and/or well-intentioned advice to seek medical attention, can I?

  Okay, I’ll accept that.  No blame.  Neither does it serve me to give in to annoyance when somebody sends me a private message regarding my symptoms and then ignores the link to my favorite informational M.E. website in my reply, and asks me, “What is M.E?”  That’s just the way it is, and what is, IS.

  Increasingly, I am tempted to use Facebook as a place to play games and read the news, and not to attempt communication.  But, on the other hand, the service I might provide to a wider readership urges me to go on writing about M.E.  The problem with that, of course, is dealing with the bullshit.  M.E., some days, is quite enough for me to deal with.  …and those days, of course, are the same days on which I would have the most signs and symptoms to report.

  I intended to report some of the signs and symptoms of the latest flareup in this blog entry.  Just now, I was inspired with a fun way to do it.  I’ll copy an abbreviated symptom list below, and will boldface the ones I’ve been experiencing.  Note that most of these are everyday occurrences, so I’ll underline the ones that have been particularly intense or bothersome this week.  Cognitive dysfunctions are listed separately and I’ll gloss over that with just the note here that I’ve had some, as usual.

  The symptoms:

  Sore throat, chills, sweats, low body temperature, low grade fever, lymphadenopathy, muscle weakness (or paralysis), muscle pain, muscle twitches or spasms, gelling of the joints, hypoglycaemia, hair loss, nausea, vomiting, vertigo, chest pain, cardiac arrhythmia, resting tachycardia, orthostatic tachycardia, orthostatic fainting or faintness, circulatory problems, opthalmoplegia, eye pain, photophobia, blurred vision, wavy visual field, and other visual and neurological disturbances, hyperacusis, tinnitus, alcohol intolerance [assumed, as usual for decades, I don't touch the stuff], gastrointestinal and digestive disturbances, allergies and sensitivities to many previously well-tolerated foods, drug sensitivities, stroke-like episodes, nystagmus, difficulty swallowing, weight changes, paresthesias, polyneuropathy, proprioception difficulties, myoclonus, temporal lobe and other types of seizures, an inability to maintain consciousness for more than short periods at a time, confusion, disorientation, spatial disorientation, disequilibrium, breathing difficulties, emotional lability, sleep disorders; sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm. Neurocognitive dysfunction may include cognitive, motor and perceptual disturbances.

  In other words:  S.N.A.F.U. and not F.U.B.A.R.  I’m fine, really I am.  Tired but happy, mildly annoyed sometimes but never angry, depressed or discouraged.  I’m a little bit frustrated at the amount of work I haven’t been able to get done, and pleased that I have done as much as I have this week.
  

  • 2:57 pm
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