Wednesday, July 4, 2012

Flares, Fear, and Quality of Life

As I was lying in bed this evening, awakened at 2 am by my stress that has been an absolute constant for the past several months, a fear started to creep in me.  It's a fear I've had before so it's not new to me.  It reared its ugly head way back in the beginning when I was first diagnosed.

I used to feverishly read up on every article, journal, and book produced by anyone whose name ended in DR in the beginning of diagnoses.  I wanted to take refuge in the information and have it comfort me like a security blanket.  I thought this way for a while until my security fell prey to one phrase, "Fibromyalgia seems to get worse with age."  It was a phrase I heard from a doctor that was treating me and that statement has haunted me for many years. 

I've tried to be comical about it and compare that statement with one made on the Golden Girls.  There was one episode where Blanche was talking about how she first found out about her period.

Her mother asked her daily at a certain age if she got The Curse.  Blanche would lay in bed with the covers over her head, terrified that The Curse would beat her down.  Finally, one day her mother brought her to the doctor and the doctor asked her point blankly if she'd gotten her period yet.  Blanche's response was, "Yes doctor.  I got that years ago.  It's The Curse I'm worried about!"

The show was funny and you may not think it ties in with what I have to say, but it actually does.  Many things we read out there about Fibromyalgia are not proven yet.  Fibromyalgia is still considered a new disease.  Some even still to this day call it a syndrome, but if they can link this beast to problems with the brain with brain scans, I'm a lot more inclined to believe that it's a disease.  Having said that-- we shouldn't take anything we read or hear about Fibro to heart unless there's been extensive research to back it up.

However, there's always that fear, that curse, if you will.  The fear that tells you that you'll always be sick.  The one that looms over you when you are stressed stating, I'll get you when you least expect it.  The one that pushes a flare on you at the least favorable moment in your life that leads you to wonder if you will get worse over time.

Ive been the primary care giver to my Grandparents for several years as some of you know.  I'm also a care giver to my Mother, and was secondary only to my Father for years too.  My brother, thankfully, stepped in once Mom got to the point where she needed to be lifted.  Her Alzheimer's is very advanced but she's still feisty and can throw out your back if you are caught off guard with her.

To this day, it still kills me that I can't help my Mother on my own.  It hurt when I couldn't do it for Grandpa either.  Grandpa also suffered from Alzheimer's but passed away about a year and a half ago.  It also has been hard with my Grandma because I've had to try to hold her up too due to her aliments and I was unsuccessful on two occasions.  She fell into my arms and I couldn't give her a safe landing.  She broke her leg because I wasn't strong enough the first time.  The second time was better because she had a safe land, but I couldn't lift her back into bed alone.  I needed the paramedics.

This kind of daily stress has had me worried, of course.  I constantly wonder if my body will one day give out due to all of the emotional and physical stress that I've been putting it through.  I worry that when I'm old I'll be a complete burden on my husband and children.  I worry that I might need a rest home and that's a financial burden that I'm not willing to have my husband and/or children bear.

There's a lot we don't know about Fibromyalgia and frankly, that's a good thing!  That gives the medical field time to research and come up with alternative healthcare practices for us.  And it gives me some hope!  I know we will advance by the time I'm old, but unfortunately, I'm stuck in the now and all I have is Blanche to keep me going at the moment.

Stay fabulous-- even when it's tough!
Love and friendship,

Kimberley

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