Fibromyalgia Awareness Day-My Story

For many years I suffered from horrible headaches which eventually turned into horrible migraines (who knows-maybe they were always migraines.  I never got a true diagnosis in those early days).  It was horrible, horrible, horrible.  While I was living in New York City and looking for a job (which was pretty much impossible due to the economy tanking-thank you f'ing wallstreet), I was getting daily migraines.  A day didn't go by when I didn't have one.  Gawd, I was so scared.  I thought I had a brain tumor.  In addition to the migraines, I had pain in my shoulders and neck area.

I was diagnosed a couple years later with Fibromyalgia.  I went to a doctor that specialized in Autoimmune diseases.  I screamed "ouchy" when he poked and prodded me in certain points in my body.  When he finished he said, "You have Fibromyalgia."  There was other things he tested me for but that's a lot of blahblahblah and not that interesting (not to say that this whole unload is interesting).  Do you want to know how I felt when he said that to me?  I was relieved.  Sooo relieved because now I had something real, something concrete to deal with.  An actual diagnosis for my pain.

I found out about sl later through some article about virtual support groups.  All I was doing in those early days (meaning 3 years ago) was lying in bed all day with limited computer time (due to the headaches), so I decided to join sl.  I found some support groups inworld but only attended meetings for a short time.  But it did help me.  I also joined some rl support groups-those do help if only for the reason that you realize you're not alone in your suffering.

I don't tell many people in my RL about my disease.  I've had several friendships dissolve because of what they view as my "flakiness" problem which really is just me cancelling at the last minute because I feel like crap.  I've had several experiences where I've been honest with friends and other people in my life and the response from them was not supportive (hypercondriac has been used to describe me more than once) so I'm reluctant to be completely open with people.  I have 4 rl firends who know about it and they don't ever accuse me of being a whiner or anything and I can plan things with them at the last minute depending on how I feel-I'm so grateful for them.  I don't share that I have fibromyalgia on facebook (although I mentioned today on facebook that it was Fibro Awareness Day) or twitter etc.  I'm very private about the whole thing which isn't really true because I'm blogging about it right now.

People often want to know how I feel and if I can describe the pain.  I basically wake up every morning feeling like I have a mild case of the flu or a mild hangover.  Sometimes I have bad days where the pain is more severe.  It feels like I have a ton of bricks lying on my shoulders and neck area all the time.  And the migraines are so bad.  Luckily, I don't get them daily anymore but I wake up every morning with a slight to severe headache.  Yoga sometimes helps.  Magnesium is a must. A normal sleep pattern would be ideal but I haven't had a normal sleep pattern (normal meaning asleep by 11pm and up by 7am) for years.  I rarely get to sleep before 3am and then I'm a zombie the next day.

Anyways, it's Fibrymyalgia Awareness Day.  Wear purple!!  If you would like more information about all this check out the National Fibromyalgia Association.  Also, don't miss the Fibromyalgia Awareness Fair inworld through Sunday, May 13.  So if you suffer from Fibromyalgia treat yourself with kindness today and if you know someone who has it-treat them with kindness.

place:  Realm of Mystara
dress:  Shiki @ Culture Shock, Empire Dress, Purple Rain-New
hair:  Wasabi Pills @ Culture Shock, Shiori Mesh Hair-New
skin:  Style By Kira, Kohia Skin
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