Sunday, July 31, 2016

You, too, could be on this list and not know it

Its been a particularly difficult week for me.  I wasn't sure where to point the blame but I have been pretty much bed ridden due to excessive sleepiness.

Because I am diagnosed with both narcolepsy (N) and fibromyalgia (F), symptoms overlap a great deal.   Both are invisible, meaning that they can not be seen, but, oh boy, can they be felt.  24/7.  And because they are invisible, they are very difficult to understand.  Even for me.

F is kind of simple...  at any given moment, without warning, anything and everything can cause a sufferer to feel the varying degrees of what non-sufferers might experience with migraines (sensitivities to light/noise/smells/etc), the flu (aches, pains, nausea), drunkenness (stumbling, slurred words, difficulty thinking and speaking), an extreme workout (muscle soreness and stiffness), and an intestinal bug (no explanation needed here).  Think about how you feel with each of these "conditions", then have them all at once, and multiply by 100.  There you go!  Wasn't that easy?  No, its not.  Every day is not this bad but there is no day that is free of all symptoms.

In the end, I decided that it was narcolepsy that was demanding my full attention this week, with F secondary with, of course, additional pain.  

My primary N drug went generic, which I was fully aware and did not expect any problems.  After about a week on the generic, I literally "crashed" and would take 2-4 naps of anywhere from a couple minutes to 20 minutes per hour.  In between, I remained foggy and not alert, which could be F.  Extreme effects of N has a tendency to flare the F; ok, any extreme of anything tends to flare the F.  Now that I think I have it figured out, what to do? 

So I was thinking....  if I often can't figure out what is going on we me and considering that I am the most knowledgeable about my conditions, how could my friends....  or family....  or anyone for that matter?  How can they know what to do...  or think...  or react?

So many suffer with invisible illnesses...  including, but certainly NOT limited to:

Addictions (Alcohol/Narcotics/Gambling/etc)
Allergies and Food Intolerances
Cancer (including long term effects of treatments)Chronic Myofascial Pain
Cystic Fibrosis
Diabetes 1 &2  
Eating Disorders (Anorexia/Bulimia/etc)
Gastrointestinal (Celiac/ Crohns Disease /IBS/etc)
Heart Disease
Lyme Disease
Mental Illness (Depression/Schizophrenia/Bipolar/etc) Multiple Sclerosis (MS)
Sleep disorders (Narcolepsy/Apnea/etc)
Post Traumatic Stress Disorder (PTSD)  

Whether you are aware or not, you know more than one person that suffers with one or more invisible illnesses.  And our invisible illnesses effect every day and every action in our lives.  Because they affect us, they affect you.

Understanding is all that is left...  unless we all want to wear T-shirts emblazoned with our list of conditions...  which we don't.

I found a somewhat entertaining list of things people should know regarding fibromyalgia on health rules and decided to share some excerpts (with a few verbiage adjustments by yours truly).
  1. Give gentle hugs please, my skin hurts... all the time.
  2. I can sleep all day and still feel like I just ran a marathon.
  3. When I’m tired, let me sleep. 
  4. When I’m in a flare, leave me alone (but check in - it makes me feel good).
  5. If I went out last night, I need a day to recover, but its ok, it was worth it.
  6. If I cancel my plans with you, don’t be mad, I already feel bad.
  7. Every morning is a tough morning.
  8. Knowing that your friend with Fibro has no pain doesn’t make me feel any better
  9. "You should exercise”  is worthless encouragement.  My day is my exercise.
  10. Because of Fibro, I get to spend more time with my husband.
  11. Yes, diet matters but in flare mode, all bets are off.
  12. Certain foods make me flare-up .
  13. Yes, my face is swollen, no I didn’t gain 5 pounds overnight. (I’m flared!)
  14. My day, week and month are carefully planned to accommodate my Fibro
  15. Bright lights, loud noise, and too many smells over-load my senses and make me nauseous
  16. To you, car rides are joy rides. To me, they’re a painful roller coaster ride.
  17. I play hide and seek with the elements: too cold, too rainy, too hot, too much sun
  18. I have 3 different sizes of clothes in my closet to accommodate flare vs. non flare days
  19. I can get moody; you would too if you were in pain all the time.  Be patient with me
  20. Some days it’s Ok to let my Fibro win, it reminds me that this is a marathon, not a sprint.
  21. Going to the doctor makes me mad, it’s a reminder of my condition
  22. Because of Fibro, the mandated down-time gives me the opportunity to write this blog, and I’m grateful
  23. There are no no-pain days but my low-pain days are my happy days
  24. I can tell your mood as soon you walk in the room because my Fibro/spidey-senses are tingling
  25. Because of Fibro, I’ve become part of a strong, supportive community that reminds me I’m never alone
Not every day is horrible...  but every day is a battle.
Support is so important....  from family...  friends....  even strangers.

The only thing we ask of you is understanding.
Understanding on the days we are not ourselves.
Understanding that we will be back to ourselves soon.
Understanding...  nothing but understanding.

And with what is going on in the world, couldn't we ALL use a bit more understanding?

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