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I am a child of Fibromyalgia - Surviving a Parent's Illness

I can't remember the last time my mother held me.  Even as a child I don't remember her holding me or picking me up.  Shortly after I was born I stopped breathing.  I turned every color in the rainbow, much the same as I did when I was four when I choked on a lifesaver a stranger gave me.  Luckily I came out ok, but as a newborn I was in the hospital for a week.  My mother no doubt came back to the hospital every two hours to feed me.  I was her miracle baby that was almost gone, she wasn't about to half-ass motherhood.  I know she held me then and rocked me and loved me.  I was connected to a heart monitor and wires and shortly after went cross-eyed. To her, I was the most beautiful baby without a single imperfection and she always treated me so.  I got a lot of attention as a baby because I needed it to survive.  My big sister always looking on, knowing I'd look up to her and want to be just as old as her one day. Those were the times my mom with such patience and tolerance and love brought me into the world kicking and screaming and fighting and lulled me to a light storm, one that finally turned gentle and loving but clumsy.  Those were the days she held me.  I don't remember them but I feel that's why I feel needy physically.  I need to be held and touched and loved because I did have an abundance of it as a baby and I will forever look for that same comfort.

I don't remember it being a bad thing because I don't think I thought anything different about it.  My reality was my mom couldn't pick me up.  Not because she want to, because she really couldn't.  I knew she had good days and bad days.  She took a lot of naps and I could see she was in pain all the time.  In my opinion then, adults were just always tired or busy.  At this time my parents were divorced and it was just the "Three Musketeers;" My mom, my sister and me.  So it was ever more apparent I wouldn't be getting any piggy back rides or anything any time soon.  I didn't see it as an issue until I got a little older and saw moms rocking their 4 and 5 yr olds or carrying a lot of bags or doing things I never saw my mom do.  I was always bitter at doing tasks for my mom, thinking she just didn't want to do them and making me and my sister run around for her.  I guess I didn't realize the pain and what it could ever really feel like.

It wasn't until the late 90's that she was finally diagnosed with Fibromyalgia or as my mom calls it FM.  It's an auto-immune disease that creates pain reactions without stimuli, her brain shooting off neuro-impulses, her body enduring pain.  It didn't make any sense.  First they thought it was Chronic Fatigue Syndrome (CFS) or Multiple Sclerosis (MS) but those, it never came to be.  For years doctors thought she was crazy, making up the pain.  It surely didn't show up on an X-Ray and it wasn't constant.  It reacts to weather, the cold is the worst, much like arthritic hands or feet.  Instead of arthritis in the joints, it's like that in the muscles.  By the time I was four, I knew how to give a good neck and back massage helping her feel better the only way a little kid could.  The Chiropractors office became an after school activity, making those doctors a part of the family.  Not only was my mom always tired and in pain, she was a divorcee, which left her an outcast in our Catholic School community but also didn't allow for a lot time to bond with other parents or me, with other kids.  I never had a sleepover or a best friend, I wasn't allowed to go to parties.  There was never enough time or money or energy for us to do those things when my mom went back to school, worked and tried to keep us in private school.

It got worse for us when my dad lost his job.  There was almost nothing to live off of at all.  Child Support slowed down and I only saw my dad every other weekend.  Those years were tough and though I thought they'd only get better once my mom married a family friend and father figure I might have been hopeful, naive and just wrong.  I wanted it to be a fairy tale, as it would seem he was getting a whole new family.  My sister and I got a Step-Dad to live with us and care for us.  It just seemed like everything was going in the right direction.

My mom's body was still always tired.  But now after marrying a new man with no kids of his own she wanted to have another baby.  They got right to it and they had to induce labor and externally move his position before he could be born and there he was, my baby brother.  A joyous time turned into 3 months of colicky hell and constant crying and arguing.  All five of us lived in a 700 sq ft duplex with 2 bedrooms and  1 bathroom.  Definitely not enough room for us all, or for their marriage.  THEN, my mother had an emergency hysterectomy.  She definitely shouldn't have had three kids but we are all happy she did.  The surgery was a success but her recovery was awful.  My mom and my step-dad's marriage never had a real start.  We spent the first 2 years dealing with pregnancy, recovery, a newborn, a surgery and recovery once more.  This was hardly the vision of a fairy-tale.  It was really rough.  I don't think my step-dad could have handled this if we didn't own the other side of the duplex, where his office still was.  When I think about it he was always over there except for dinner, in his own little cave.

My mom's recovery was just long and awful.  Without the person that did all the house work and running around it was tough for everyone to pitch in and with a new baby.  Recovery is worse for an FM sufferer.  The pain just escalated to a higher degree.  My mom always told me that stubbing your toe sucks and it hurts really bad, but just imagine having FM and stubbing your toe.  It's like a million knives shoot up your leg and it just throbs and throbs.  I couldn't even imagine that type of pain and she wouldn't lie.  It knew it was an awful plight I just hoped I would never have to feel it.

As the years went on the stress of the marriage and her pain left her lonely and depressed.  I don't think she would have admitted it because she's a survivor and very stubborn.  She was born a caretaker and always has been, rarely had she had time to dwell on herself, sadly especially since her life has been filled with chronic pain.  She can't handle an 8 hour job, barely a 4 hour one. She's been denied Disability every time she tried.  If it wasn't for Chiropractic she'd be in a wheelchair, we are convinced.  I know there are many others our there with this illness, old and young.  It is very lonesome to have pain all the time.  I almost don't know what kind of woman and mother Ill become because so far, I'm physically capable of doing so many things.  I don't know if its stress that causes it, if you're born with it or if having children makes it worse.  But I really would like to have a fully capable life, without pain, I've got enough of all that emotional garbage to overcome.  After the heart monitor, eye patch wearing cross eyed and clumsy past, I'd like to think I could be off the hook.  Everyone has a cross to bear.  Unfortunately for my my mother, FM continues to limit her but of course not define her.  She would be running down the soccer field one day and not be able to walk the next.  There are medications now available but we are skeptical.  They haven't been tested that long and she is scared of side effects and then making other parts of life worse, like depression and other things.  She might not admit it now but she is an alcoholic.  After years of numbing and self medicating, it does catch up with you.  I am curious to know how other people are doing with this illness and how their family members handle it, handle living with someone living with illness.

I mean my mom's father was a bi polar alcoholic. Her mother has Fibromyalgia.  My dads mom had Fibromyalgia and her husband died of lung cancer.  So I mean, this is my family.  These are my genes.
I love my mother dearly but she had a life full of taking care of others and not enough time taking care of and loving herself.  Her journey seems to be just beginning but I know it will be a long one.  She deserves to be a little selfish now as FM consumes her I just hope she can find a way to cope and not numb.  I hope she sees that drinking is not a way to handle anything.  I hope as her marriage dissolves she can be there for my little brother who needs her dearly.  I hope she can see all these things and know how much I love her and feel bad for her that life continues to throw her curve balls.  As her youngest daughter and one whom shes held close as her miracle, I can only wish her happiness on her new journey.  I hope she has the strength to overcome her flaws and the wisdom to see what to leave behind and the courage to finally know her worth and capabilities and act on them but not too selfishly, but for the good, for herself and for her health.

PLEASE if anyone has any comments or discussion topics on Fibromyalgia or being a support to someone with FM, please comment or feel free to email me. thelovelyalex.e@gmail.com
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