The diagnosis given to me in January is now official…I have Fibromyalgia.  It makes a lot of sense, but to me doesn’t totally explain everything that I am facing.  That part is frustrating.  In some ways I am glad to have a diagnosis, something with a name that I can face head on and try to understand.  In a way, though, I am still frustrated.  Not only does it not explain all of my issues, but the diagnosis itself is so hard to explain and understand.  To the world, I look like I’m fine.  The blood tests don’t prove or disprove a diagnosis of Fibro.  But the pain is very real.

I must admit to some anger here.  I don’t want there to be anything wrong with me.  I wish I were lazy, as some have accused me.  Laziness can be fixed.  If there had to be something wrong with me, then why this?  Why something so abstract and hard to explain.  One close family member even challenged me on the official diagnosis.  What is it?  Fibromyalgia.  What did the doctor say?  Fibromyalgia.  No, not what you are calling it, what the doctor says its.  FIBROMYALGIA.  Another family member commented to my husband that being on the computer (I do facebook a lot, as that is a way to touch the outside world for me right now as I am isolated and not able to get out…I also use the computer while I rest between tasks.  I hurt too bad to work straight thru most days)   is certainly easier than loading a dish in the dishwasher or running a vacuum.  I am treated like I am just a complainer and am just making excuses. 

While these are the types of reactions I am receiving from close family members, support from others might as well be non-existant.  Most people do not know what I am going through, and the ones that do don’t ever call and check on me or do anything to offer me support.  I get a lot of calls for people needing things from me.  But never just someone caring.

I have stopped calling others for the most part.  I feel like no one wants to always hear someone complain, someone who always is dealing with something else.  Yet another thing.  Again.  And if what I am dealing with isn’t enough, add in the issues that every one of my family is dealing with.  Emily has been sick again, almost had pneumonia and missed 3 1/2 days of school.  Andrew is dealing with issues of Encopresis again at school, and issues stemming from his Asperger’s.  Russ is dealing with pain and mobility issues.  He is starting PT again, and is seeing a specialist to try and stabilize his legs. And as of yesterday we found out that he has age-induced macular degeneration at age 42. 

As soon as I start to talk, this stuff comes pouring out…I am so focused on it day in and day out, and I don’t really have an outlet.  I find most people cannot handle that kind of pain and honesty.  It makes them uncomfortable.  One family member told my husband yesterday that she’d rather not know details because then she worries.  Well, I am so sorry to worry you.  (although I have to say, if we didn’t tell this particular family member things and she were to find out elsewhere, I’d be in trouble with her for that too…where is the balance there???)

I am starting treatment (Savella) for my fibromyalgia, and I am hoping that it will make a difference for me.  I guess time will tell on that one.  I just am so tired of feeling this way.  I am tired of being in pain.  I am tired of not being able to sleep normally.  I am so tired of feeling fatigued and wiped out most of the time.  I am so tired of the bowl symptoms and the joint pain.  I am so tired of doing things and then not being able to function the next day.  And I am tired of people dismissing me and my pain.

Just because I look like I am ok, it doesn’t mean I am.  Just because a person is not in your face with their issues doesn’t mean they don’t need a friend, someone to care.  Just because you don’t understand the diagnosis doesn’t make my diagnosis illegitimate.


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