Who has your back?

Okay, so today marks our first snow storm here in New England!  And, no, we aren't talking about a few flurries.  Actually, we are talking more along the lines of 6-10 inches.  I must admit, I'm excited.  I love the newness of each season.  Remember the first day in the late spring when we can wear sundresses or tank tops and the kids can drag out shorts?  It's a night that will most definitely end with ice cream and playing outside for too long.  I feel the same way about the first snow.  Granted, it would have been nice to get through Halloween first, but hey. This is me trying to live in the moment.  So, at this moment I am warm and safe and it's pretty outside!  I'm working hard on staying in the moment lately. It isn't that I'm really evolved or anything.  I wish I was.  Truth is, I just get overwhelmed by every little detail of my life.  So, I literally focus on the task at hand.  Right now I'm focusing on my thoughts and the sound of my fingers on the keyboard.   Who feels completely and totally overwhelmed, overextended, exhausted and incompetent???  Yeah.  Take a number, sista.  We have to come together and have each others' backs.  But, that cannot happen if we aren't willing to foremost have our own backs.  This is one of those big life lessons that I was sent to earth to learn because this comes up in my life constantly and has for many, many years.  So, here is what I did to respect myself and get my back today.  I said no.  I chose to work all day on my sons' Halloween costume because I wanted to and he still thinks it's cool if I do a good job.  Today was the only day I had to do it.  Therefore, I am exhausted, sore in pain and in no shape to attend the annual family Halloween party.  I excused myself and here's the kicker.  No guilt!!!!  I can honestly say with the purest of hearts that I do not have an eensy bit of guilt.  I knew if I went, I would be overdoing it (pretty sure I already have anyway) and would be only going for the benefit of others adults' needs and expectations.  So, my fantastic husband brought the boys over and I am here blogging, soon to be snoozing.  So, how many spoons (please see the spoon theory on butyoudontlooksick.com)  do I get for that?  Let's see...........setting boundaries to take care of myself AND embracing change (i.e.snow).  Oh, I think I deserve at least 5 for that.  I'm going to need them.  I will try to store as many up for the upcoming months as possible.  

Before I sign off, I am leaving a link to a great video and song regarding Fibro awareness.  I hope you can learn from it and be able to love yourself a little more after seeing it. 

Gentle hugs to all.

http://youtu.be/jD81VKBkxHc

One is the the loneliest number

Remember that song?  Why is it that with a house full of people, I feel so alone?  Oh, I know.  I have a flare up.  Today when I walked through the living room I actually saw red when I witnessed a family riding by on bikes.  The rage in me was palpable.  Yes, people I am livid that there was a nice family riding by my house on bicycles.  I'm that maniacal.  Listen, I'm not an angry kind of girl.  I let people go in front of me in traffic, I stop at all crosswalks and wave to people with a smile.  I can honestly say that for the most part, I treat others the way I want to be treated.  So, why the sudden urge to scream out my window at those innocent passersby today?   I'm furious.  I'm hurting physically, yes.  But, I am even lonelier and more sad than I have felt in a while.  I want to be apple picking today.  I want to rake leaves.  I want extra hugs and a picture drawn for me by my four year old.  How does one ask for what she needs when her needs are always so great?  It's like asking the person who stopped on the highway to help you change your tire and let you use their cell phone to give you five hundred bucks, too.  Okay, not the best analogy.  I'm trying here.  It's hard to write about this stuff.  I hate feeling needy and dependent.  There is no way in hell I am asking my husband to help me take a shower, for example.  I need one and want one but I will wait, thank you very much, until I can do it myself.  I am not 98 years old.  He did not sign up for that and frankly, neither did I.  I have been told that in order for feelings to not get "stuck" inside of me, that I need to move and walk or dance or whatever I can do to keep my body moving.  What do I do when typing, reading and walking to the bathroom zap every ounce of what little energy I have left?

What's a girl to do?  Well, she feels her feelings.  She writes.  She gets through the day.  Every stinking minute of it. 

She closes the pages to this rotten day and says good bye and good riddance.

Then waits for the sunrise of a new day.

The Enemy

It's been so long since I've blogged.  I've been doing a lot of writing on my forthcoming (hopefully!) book.  However, I have come across this piece of writing from a few years ago.  Although it is two years old, I believe it captures the essence of what life is like for a parent with chronic illness.  Maybe it will resonate with you.  Here it is:

                                                                      

The Enemy

The enemy sneaks up on me even when I am awake and trying to look around.  It is an evil force that encompasses my body.  The enemy is brilliant if not menacing.  When I blink, it is there squeezing its way into my innermost parts of my body.  My muscles, fascia, and soon my brain.  Exhaustion sets in.  I fight the enemy.  I begin to feel beaten down.  I fight the enemy more.  I pray.  I look at my children.  The enemy knows.  It sees all and laughs at me.  I tell the enemy to go to hell.  Instead it burrows deeper inside me.  Pain heightens.  I drive and pick up my son.  I play with my 2 year old.  The enemy is always present.  I ignore it.  I act as though it is not there.  I keep pushing.  Sleeping isn't enough.  Doctors' appointments.  Hope starts to fade.  Will you play with me?  My heart is rapidly breaking down.  The enemy shines.  It is winning.  I say LEAVE ME ALONE!!!  It never does.  Vitamins, medications, therapy.   Pain becomes practically unbearable.  Loneliness seeps in.  The enemy is winning.  It smiles wickedly.  I pray but lack energy.  Jesus help me, I plea.  But the enemy has broken down my hope and faith.  I cannot find God.  I am lost.  I am so tired.  Pain is everywhere.  My family begins to fall apart.  I know it is I that is the cause.  I am frozen.  I need to lie down. I cannot move or do anything.  I sit and watch as my world crumbles before my very eyes.



Old Journal Entry from 2004; Hope Lost

I found myself going through some old journals of mine for material for my book.  I came across this one and found it so sad but so telling of that time in my life.  Here it is, for what it's worth.

Journal Entry 12/11/04

It's been a very rough couple of weeks.  I tapered off the Zoloft and started Cymbalta in hopes it would work on my pain.  But, either I'm not responding to Cymbalta or it hasn't kicked in yet.  Last week was so horribly miserable.  I didn't feel suicidal but I felt so dead inside.  I just wanted relief.  So, now I am taking the Cymbalta along with 100 mg of Zoloft (half of my previous dose).  Almost immediately after my doctor put me back on the Zoloft, I felt a lot better.  I am really struggling with my role as a parent right now.  I haven't been getting a lot of good sleep and I'm fighting the cold Nicholas has.  But, I have no desire to really engage and play with my little guy.  This makes me feel horribly sad and guilty.  I feel so burned out.  But, why?  Todd's been home all week on vacation.  This has helped me tremendously.  Since my med. change has been so tough and I've been feeling so tired, etc. it's been great to get some relief from full time parenting. 

Nicholas is the cutest, smartest, funniest, most imaginative little boy.  I absolutely adore him!  But, with winter here and the days long and dark and Todd gone 12 hours a day, I feel lonely, anxious and restless.  I'm having great difficulty being motivated and staying in the present.  Then when I do get a break on Tuesdays and Thursdays when he's at his little school, I feel so incredibly relieved.  When I get sitters so I can go to therapy, get my massage or whatever, Nicholas usually loves it.  But, I feel guilty!  I feel like a bad mom or inadequate when I need a break from playing trains or his imaginative animal games.  I feel like I'm failing him somehow.  I still feel so clueless sometimes in my parenting.  I can see clearly who and what I do not want to be.

I don't want to:   -have the TV on all day

                              - leave him alone all day or ignore him

                              - yell, spank or shame him

                             - ignore him so I can do my own stuff

                             - squash his imagination/creativity and self esteem

I do want:  - to read to him

                     -encourage him to play independently

                      - give him uninterrupted time alone with me each day

                      - be silly with him

                      - set clear limits with him

I find this last one so difficult because sometimes I don't even know what is okay and what isn't.  What is good/normal parenting vs. what is poor parenting.  I'm very unsure and confused a lot.  When he ever said, "I need a new Mommy because you are always sick and have too many boo-boos", he really struck a chord in me.  I often feel very broken and incomplete because of my Fibromyalgia.  I'm so tired and sick, especially in this weather.  Just being sick causes me to feel inadequate as a mother.  Not to mention, as a wife.  Todd is pulling 90% and I'm only doing 10% lately.  More guilt.  Add to all of this my desire for another baby and the conflicting emotions that brings up.  Ugh.  I'm thinking of seeing a new naturopath.  The person I was seeing was so nice but just not a clear communicator and I really feel like I need a take charge, motivated person to help me to hope again. 

Is there a lost and found box for hope? 

Enough really is Enough

Well, here I am on a beautiful, sunny summer day inside on my computer.  I am feeling mixed about this.  I would rather be outside sitting (okay, I admit it.........lying) on a chair but I feel compelled to write.  And when I feel that way I can only put if off for so long.  My last entry was all about coming off some medications.  I am happy to say that I am still here and did not fall off the planet as I felt I might.  I was successful in coming off one medication.  With the help of my naturopath, detox tea, gallons (I kid you not) of lemon water and literally and figuratively "sweating it out", I made it.  Shockingly, I was determined to wean off not just one medication but two medications simultaneously.  Yes, I like to have very high expectations of myself so that if (more likely when) I am unable to reach those often unattainable goals, I can slap myself around a bit.  It's such fun.  Lest I stay stuck in the past, I must say that I am learning!  It is not too late to re-program our brains, people!  Okay, so it's taken me almost 20 years to begin to actually do this, but hey I am trying!  Coming off medications can turn a fairly stable girl into a cross between Freddy Krueger and Regan McNeil (a.k.a. Linda Blair in the Exorcist).  Truly, I could hardly recognize myself, I was such a mess.  Not only did I feel physically sick, I was also on the most elaborate emotional roller coaster ever to be experienced. I wasn't able to sleep either, which was such a nice addition to all the excitement!  Take pregnancy, puberty, pms, menopause and times them all by 100.  That is a pretty accurate description of how I was feeling.  If you did not have the pleasure of being around me during this time, I'm really sorry you missed it.  I was a blast.   So, in the midst of trying to do something positive for my body, my body was also in complete upheaval and turmoil.  "How can this even be worth it?", I would cry to my husband.  I believe he was thinking the same thing, although I doubt it was about my medication!  On the sixth day of not sleeping, I finally realized that, strangely, I am not Superwoman.  This is always such a shock to me every time I come to this conclusion!!!  Enough was Enough!!!!! So, I sucked it up and went back on a small dose of my Klonopin so I could get some desperately needed sleep.  That first night of sleep was as good as eating the most decadent chocolate dessert.  I cannot even tell you how amazing I felt after a few more nights of blissful sleep.   So, as if I needed any added proof, I knew I had made the right decision.  However, the Wellbutrin is gone.  So are the little electric shocks that made me feel like I was going to tear my hair out.  Phew.  I made it.  Okay, so, I'm still on some Klonopin. However, I am down by one full dose.  And you know what?  That's okay.  I am okay (I may be channeling a little Stuart Smalley here).  I'm doing exactly what I would tell my best friend to do.  I'm taking care of me.  So, maybe I really want to get off the Klonopin forever.  I will.  When I'm ready.  Right now, I am enough.  And isn't that what we all need and want to feel in the long run?  Ahhh.  Maybe I do have some super powers after all.  I'm Super Me.  And that is good enough.

I'm sorry, I didn't realize I was an addict.........

So, did I get you with the post title?  No, it wasn't just a trick to get you to read my entry.  And, no, I'm not secretly a heroin addict.  But, I might as well be.  For the past 3 days I have been sweating, shaking, unable to sleep much, experiencing heart palpitations, mood swings, and irritability (that's a nice way to say I am biting everyones heads off and eating their bodies for dinner).  Why is this happening?  That is an excellent question.  I think I have the answer for you, although be warned.  You may not be ready to hear this or may not want to hear this. Truth be told, I don't either but here it is.   I have been on Wellbutrin and Clonopin for at least four years for depression and anxiety.  Interestingly, I began the Clonopin to reduce the anxiety that the Wellbutrin was causing me whist battling my demons of depression.  So, here I am years later unable to make my leg stop bouncing as I write this.  Over the past 5 weeks I have slowly been weaning off of these medications.  The key to going off meds is to, 1). do so with a doctor's guidance, and 2). do so very slowly.  Okay, no problem.  I am a good little patient.  I followed the rules.  So, why on Tuesday, after having had my last doses of these meds five days previous, did I suddenly get so sick?  It started with my jaw feeling so tight and cramped that I could barely move it.  My heart was jumping out of my chest and my body was now a home for electrical shock treatment.  No, I did not go to the hospital for electric shock therapy.  No need to.  My body was doing so all by itself.  So, here I am at home with my boys and it dawns on me that this may be medication related.  Hey, I hadn't dropped dead yet so I felt fairly confident that I could cross a heart attack off my list.  It was confusing to me.  I had been off the meds completely for five days.  Why now?  Everything was going swimmingly.  In only a few days time I went from peaceful and feeling healthier than I have in over a year to being a crumpled mess.  A recommendation from my medical doctor to go back on low doses of the meds to ease the symptoms was tempting.   However, my stubborn and pure bull headedness roared louder than any medical professional could.  I then called my naturopath and once I heard  her warm, kind and supportive voice, I realized that tears were falling down my face.  Instructions to drink my detox tea, increase my lemon water, continue to take my milk thistle tincture, purchase something called oats grass tincture and to call her today if I'm feeling horrible, calmed me a bit.  This is not to say that my symptoms lessened or that I was any more pleasant to be around.  But, I made it through the night and here I am, bouncing leg and all, writing this.  2 quarts of lemon water, and 5 cups of detox tea down and despite my killer headache I know I am doing what is right.  For me.  This is, perhaps, the most important message in my post.  We all have gut feelings for a reason.  Over the years we may have lost our ability to connect with ourselves.  This happens.  However, we can all reconnect and listen.  My time to wean off medications is now.  It was not my time years ago or even 6 months ago.  Not everyone needs or wants to do this and that is okay.  The key, I think,  is for all of us to grow confident in listening to our hearts, our guts, ourselves.  If I survive the next few days of detoxing I think I will be happy I listened to mine.  I promise to let you know.

New Study on Fibro/CFS and Thryroid Disease

Busy days here lately and this week is all about keeping me well enough to go with my husband to the Emmy's in Boston on Saturday.  Hence, lack of blogging.  This girl's eating well, napping when possible and taking more supplements and vitamins than I can stomach.  No, seriously some of them are really gross!

However, just came across this article and found it very interesting.  I like to read research and studies.  Sometimes I read too much.  It's like watching a bunch of news channels all at once by just clicking to switch back and forth from one to the next.  Gotta make sure you've got the FULL story!!!  Needless to say there are times that I need to calm down. 

I'm adding this link here http://thyroid.about.com/cs/fibromyalgiacfs/a/cfsfibrothyroid.htm

Having recently been diganosed with hypothyroidism, this interested me in particular.

So, take it for what it's worth.  We just need to remember our worth and our own power to read studies, research and then live our lives the best we can.  

To quote a bumper sticker, "I Have Fibromyalgia but Fibromyalgia Does Not Have Me".

Giddyup!