Saturday, February 16, 2013

A New (to me) Pain Scale

[Image Description: Title reads "The McGill Pain Index." The bottom reads "Rigorously tested scientific pain scale.  Overall score is determined by compiling various numerical and cross-referenced descriptive words, allowing direct comparison across conditions."  In the middle of the image, there is a vertical scale that goes from 0 (no pain) to 50.  It is color-coded and divided into 10s, so that the bottom 10 points are light yellow and the top 10 points are bright red.  Different medical conditions are placed next to their pain level on the scale.  For example, a sprain is located at about 15.  A toothache is at about 20.  Fibromyalgia is slightly below 30.  Childbirth (with training) is at about 35 and childbirth (with no training) is at 40.]
This is the newest (to me) pain scale that I have come across lately, and it really puts fibromyalgia pain into perspective for me.

On this scale, the following are considered LESS painful than fibromyalgia:

  • sprain
  • fracture
  • arthritis
  • toothache
  • after-shingles nerve pain
  • non-terminal cancer
  • phantom limb pain
  • chronic back pain
The following are considered MORE painful than fibromyalgia:
  • Childbirth (with training)
  • Amputation of finger/toe
  • Childbirth (with no training)
  • CRPS (Complex Regional Pain Syndrome)
Of course, this scale doesn't include every medical condition ever created, but after being accused of lying or being flat-out ignored by doctors, even this small validation of the severity of fibromyalgia is worth something to me.

My pain is not all in my head.

My pain is real.

My pain is severe.

My pain is something I have to live with every day.

Saturday, February 9, 2013

A True Day in the Life of...

A couple of months ago, I posted "An Hour or Two in the Life of..." in an attempt to give people a general idea of how fibromyalgia has affected my daily schedule.

Over the Winter break, I compiled a much longer list that describes an entire day of my life as a "fibromite."  I hope this sheds some light on the issues many people with fibromyalgia (and possibly other chronic illnesses) face each and every day.  There is no break.  There is no rest.  There is only pain and an attempt to cope with that pain.

  • Set alarm for 8:00am
  • Lie in bed and assess pain levels for the day.  This takes 30 minutes to 1 hour.
  • Determine if hands can grip hairbrush and toothbrush.  Brush hair and teeth if possible.
  • Determine if back pain is too substantial to take a shower. (A bath is impossible unless my husband is home to help me out of the tub.  He often has to help me with showers as well.)
  • Determine what the easiest clothes to wear would be and get dressed.  This can take 10-30 minutes.
  • Take the dog out if needed.  (This usually involves walking about 20-30 feet.)
  • Eat breakfast if there is something easily prepared (e.g. Pop-tarts).  Skip breakfast if there's not.
  • Alternate between sitting on the couch and sitting on a chair (each piece of furniture alleviates one pain but aggravates another).
  • Study - the time on this can vary greatly depending on the amount of concentration and focus lost due to pain levels.
  • Determine if I can stand long enough to make myself a sandwich or heat something up for lunch. Skip lunch if there's not.
  • Depending on the day, I will either study more or go to class.
  • To go to class, I must first determine where I need to go on campus.  I currently volunteer at one of the archives on campus in order to gain experience for my degree.  This means that both days I am on campus, I must at least go to the library (where the archives are located) and the History building.  Going to the library (and the student center when needed for counseling appointments) requires much more walking and a nearly straight uphill climb.  One of my classes is located in a separate building halfway across campus and is also on a steep incline.
  • One the day I only have one class (plus volunteering), I will be on campus for about 8 hours.  On the day when I have two classes (plus volunteering, I will be on campus for about 12 hours.  This does not include any commuting time.
  • To get to campus, I must park in one of the commuter parking lots and walk to the bus stop.
  • Determine if there are places to sit down at the bus stop if the bus isn't already there.  My back will already hurt from walking and carrying my backpack.
  • Determine if there is a place to sit down on the bus for the 15-20 minute ride to campus.  If I have to stand on the bus, I may have to give up going to the library or student center and come back on a day when I don't have class.
  • Walk to the appropriate building(s).
  • Determine pain level once in class.  If this is the day I have two classes (one afternoon and one evening), I will also have to determine if the pain level is so high that I will have to skip the evening class.
  • Depending on pain level, attempt to concentrate on topics discussed in class rather than pain.
  • While at class, my husband (who carpools with co-workers since we only have one car) has been dropped off by his co-worker to pick up our car so he can come get me from class.  He does this so I don't have to worry about possibly standing on the bus for even longer than 20 minutes on the ride back. (It is a night bus that has longer run times.)
  • Determine pain level once class has ended and my husband has picked me up and taken me home.  Lay flat on my back for most of the remainder of the evening.
  • Determine if pain level is too severe to sit up and/or grip utensils to eat dinner. (I am unable to stand up long enough to cook dinner, so my husband does all of that.  He also does 99.99% of the cleaning.)
  • If I did not take a shower that morning, determine if my husband is too tired from working and caretaking to help me with a bath or shower.
  • Attempt to relax by watching TV or browsing the internet.
  • Take insomnia medication around 10:00-10:30pm to give it time to kick in.
  • Go to bed around 11:00-11:30pm (hopefully).  I will sometimes go to bed as late as 1:00am due to insomnia.  Alternately, I will go to bed but not be able to fall asleep for an hour or more.  I frequently (5 or more nights per week) will wake up in the middle of the night and have difficulty getting back to sleep.
  • Start the whole process again the next morning.

**In addition to this timeline, I rarely (if ever) go to the grocery store or other type of store.  If I know what I need (e.g. toilet paper) and know where it is located in the store AND can calculate if I will have enough energy to walk to that location and carry the item to the check out, to my car, AND into the apartment, then I am more likely to go to the store.  Unfortunately, this rarely happens.**

**In addition to the Fibromyalgia I live with every day, I also deal with anxiety and depression with suicidal tendencies.  I have panic attacks in large groups (probably 4 or more), especially if I don’t know the people.  I will even have panic attacks in large groups where I know the people (such as family).  My depression is debilitating and further exacerbated by Fibromyalgia.  The pain levels and the idea that I’m a burden to my friends and family have caused me to contemplate suicide as recently as Fall 2012.**