Show and tell?

I found out today that fibromyalgia has an awareness ribbon.  Yes, a purple ribbon.  It is shared with a great many other causes.  Some, seemingly completely unrelated.  I wonder why they do that?

• Domestic Violence Awareness Campaign
• Spirit Day and victims of homophobia
• Sarcoidosis awareness
• Lupus awareness
• Fibromyalgia awareness
• Childhood Hemiplegia and stroke awareness
• Cystic Fibrosis awareness
• Alzheimer's Disease awareness
• Pancreatic cancer awareness
• Workers' Memorial Day
• March of Dimes Awareness Ribbon

Interesting.  I wonder why someone would wear a fibromyalgia ribbon?  I friend of mine has a little boy with cystic fibrosis.  Her family is doing all she can to raise awareness and funding to aid in the research and bring about a cure.  In that case, a ribbon would be perfect for her.  Or anyone in a similar predicament, for that matter.  However, in my case, I have found that I have always been reluctant to share about my fibromyalgia and wouldn't want a ribbon drawing attention or questions.

A lawyer I went to see about getting help for my injury (after a year of the case workers running me around in circles) said something to the effect of, "you should see someone other than an ortho.  you never know, you might be diagnosed with an exotic syndrome, like fibro, or something."  I had no idea what he was talking about at the time.  I did not even know what fibromyalgia was until my rheumatologist checked me for it (with the standard 18 point test).  We then asked my husband's uncle about it, who is a neurologist.  He is a brilliant man and apparently a leading exponent in his line of work.  I knew he could fully explain and help us to understand what I had just been diagnosed with and maybe be able to give me some tips on how to manage it.  Not so.  It was so discouraging.  Our uncle happens to be one of the many physicians who do not believe Fibromyalgia is a legitimate disease or diagnosis.  I came to learn, many people I have come across believe that, like the aforementioned lawyer, fibromyalgia is an exotic disease: either a hypochondriatic invention of the mind or just a bucket, a catchall for who knows what.

Its hard to share with others about my condition.  I don't like doing it.  There have been many times where I did tell and wish I didn't.  People see me, I am a seemingly fully functional person and when I tell them about my Fibro it just seems incredible.  I'm always afraid I will sound like someone who is complaining.  Explanations in the simplest terms are not enough, of course.  "O, it means I have (suffer from?) chronic pain and chronic fatigue...and all that it entails...?"  Almost anyone will ask more questions, and then I always feel like I'm being weighed and tried to see if this is at all legitimate.  Even for people who know about FMS, they see me, see that I have to look after my two children and attempt to keep house while (desperately clinging at any efforts) at actively pursuing a fulfilling life; these people immediately think its my excuse to stay home.  I appear to lead normal life.  It can't be that bad.  Or worse, they think its my excuse to be lazy, maybe.  Well, its just not true.  The fact is having Fibro for me means I am battling headaches 13 days out of 14; I have to literally WILL myself to get up and do anything in the morning and the proceeding hours; having fibro means I never get a break from pain, never stop feeling physical pain; it means everything I do has a consequence;  My child (or both!) is sick and vomiting all night?  Sleepless nights, heck even just a restless night foretells a terrible day riddled with acute pain and headaches.  o the headaches.  Or even pleasure seeking has its downsides.  Taking my kids to a theme park for 6 hours, now something like that I pay for many, many days after.  It is just not worth it sometimes.  And we are talking kiddie rides, short lines, and taking it easy.  I ramble...  but heck, this is my journal and I have told no one about it.  Well, except my husband.  We have no secrets.  Thats healthy.  I finally have a safe place to "talk" about this.

People see me and I'm not in a wheelchair, I don't have a cancer diagnosis (praise God!) and they think what I am going through is not legitimate.  Some expect me to get better and do not understand there is no remission for fibromyalgia.  At least I have never experienced it, and if there is a way to get a break, a real break without numbing with pain medication, PLEASE TELL ME, someone, anyone.  Even my own family members do not understand it, which is why I was so reluctant to share with them in the first place.  They can't see it, its not killing me.  They can't see the cage thats holding me in.  They don't realize what its like.

I guess wearing a purple ribbon would help "raise awareness."  I guess I'm just not the stout hearted girl I used to be and I just don't want to be the one to tell people why I'd be wearing the ribbon.  Horsewhipped.  It breaks the spirit.

Something to sing about:  My little N is finally feeling better and in "school."  After being sick for what seemed like ages and not being able to go to his little 2 1/2 hour day school for more than two weeks, he is so glad to be back.  He was so sick, and it culminated to a visit at the Children'd Hospital ER.  But now he is happy and hopefully going to regain the weight he lost, my poor boy.  He is glad to be with his buddies.

Antsy

Can't sit still long enough to write a reasonable update.  I swam for the third time last night.  Having fibro pain in extreme.  And its the kind I don't like.  Not terribly debilitating, however, I feel like I could claw my skin off.  The discomfort in my upper back/neck/shoulders (i should think of an abbreviation for that) area is intense and terrible.  I'm inpatient and irritable.  Trying my darndest not to show it.  I hate it.  Mr P is in class tonight, and that doesn't help.  but maybe its a good thing.  I'd probably annoy him.

Ibuprofen tonight and maybe I should take that ambien right...an hour ago.  Gotta get up early and take the boy to school.

Something to sing about:  the fact that i'm too sensible to claw my skin off is good.  i'd have been a be-ribboned mess years ago.  and its such a good thing my kids are so darn cute.  it helps keep things in perspective when i'm about ready to burst because the discomfort is getting the best of me.  

Second day swimming!

My husband made it possible for me to get over to the pool on Friday evening.  Thank goodness I have a pretty good memory, I was able to replicate what I would have done on a typical day (and to the best of my knowledge, a typical first day in the pool) for aquatic therapy.  Once in the pool its pretty difficult to remember NOT TO push oneself too hard.  Moving through the water is a delightful sensation.  So gentle on the joints, the light resistance of my limbs with the different stretches and exercises it almost feels too easy.

But then Saturday rolls around, and I am tired.  I could already feel it on Friday upon exiting the pool, the weight of my own body as I took each step ascending upward and out of the water.  My own body weight, pound per pound, just felt different to that buoyant and bouncy self a moment ago.  O, and Saturday, Not even Saturday morning so much, but Saturday afternoon, O my.  Tired and sore.  Did I overdo do it?  How can I tell?  On a scale from 1-10 I felt like an 8.  I was discouraged, but at the same rate, encouraged.  I remembered my other first days in the pool.  This was nothing new.  I needed to find my pace.  Not kill, and not be ineffective.  Needless to say, anti-inflammatories and ambien at night were in order.  and taking the prescribed 2xdaily 50mg of tramadol were definitely necessary.

Sunday: Church, then back in the pool.  I did everything the same, except I decreased the pace a little.  Lets see if I don't die tomorrow.  That would be bad.  I have the kids all by my lonesome until 530ish and they both still have colds.  Its nearly 11pm now.  Why am I still up?  Pain.  Can't sleep.  I figure I may as well write this update.

Truth is, I take 2 tramadol everyday.  I have for about a year now.  Before that I took one tramadol a day for a year.  Before that I took nothing.  Nothing for three years or so.  Just over the counter stuff (ibuprofen) and natural supplements like glucosamine.  Then the headaches started, then I started the tramadol.  Whoa! I realized how much one little pill helped me to get things done and I was...hooked.  Even if it wasn't everyday.  It came to be.  Now...  Well, now I just want to be off everything, if thats possible, if thats advisable, and not depend on any pill to feel well.  I did it before.  I am sure I can do it again.  Why, o why can't I just be like everyone else?

Well, anyway, I am swimming again.  and thats good.  something to sing about for sure, even though my body hates me, it feels like I have talons clenching into my neck/shoulders/back and I have had to readjust myself or get up a few times while typing out this post because I am uncomfortable.

Something to sing about:
My husband I have not been getting along very well lately.  My condition takes a toll on a lot of things. Feeling crummy all the time leaves one vulnerable for a number of things.  If things are shaky in other areas, the likelihood of being able to deal with them very well in the midst of physical pain (read:turmoil) that also causes emotional strife is probably very low.  Mr P has so much on his plate already; when I fell apart last week, he just wasn't up for holding me together.  And as resentful as I was (i guess part of me is still working on that) for not being there for me in a very dark and low moment, I am beginning to understand and forgive.  I know I am not perfect.  We were very young when we got married.  I am sure that regardless of whatever my disappointments may be, he himself has had his share of surprises.  There are things that have happened to us, changes that have taken place in me (FIBROMYALGIA! for example) that neither of us anticipated.  I am also learning that things will not always be as bleak as they seem.  As long as we keep working on things together as a team, maybe not always 100% understanding each other, but always trying to respect each other 100%-  well, I think we will get pretty far.  Not only that , but I think we will set a pretty good example for the kids.  Which is important.  For after all, I LOVE my husband.  We love each other.  And our little family, we have to take care of it.  That is why I am working, crawling on this road to getting better.  So that I may be better equipped to deal with whatever life hands us.


"Above all, keep fervent in your love for one another, because love covers a multitude of sins." 1 Peter 4:8


Bye for now.
Me

A shovel

I am in a rut.  I just don't feel any motivation for anything.  Not anything.  I have low moments when my pain peaks.  My spirits are low.  But it seems that even when things are not acute, i'm at this plateau, emotionally and physically where I just don't get any higher, go any further, get any better.

Now it comes down to not wanting to leave the house.  The things that interested me before, just don't call my attention anymore.  I used to be so creative.  I had a number of different creative outlets, and now, I just don't care to go there.  There are so many other things that need doing I say, "Once I do these necessary things, I can do something else."  But the truth is, I just feel lousy.  I don't care to do anything.  Taking care of the kids is about all I do.  And really I feel like I am not a spectacular mother in that we should get out more, I should play with them physically more.  I am in a rut.  Is this depression?

I get angry inside because washing my daughter's hair hurts.  I have chronic tendonitis and carpal tunnel, so pinching and grasping can be a problem.  Its silly, I was using the wrong size plastic container with which to rinse my daughter's hair in the bath for the longest time.  And then my thumb and wrist would hurt.  I switched to a plastic cup and my problem has decreased.  I should have thought of it sooner, but I just didn't.  I guess I was just clouded by my frustration.  And then there were times when my husband would wash her hair and I would not remember, of course, until the next time I hurt myself doing it.  Always feeling, "whats wrong with me?!"  sometimes failing to make accommodations.  I guess, that even after nearly seven years I expect that I will get better.  I will be me again.  And I'm not.  I don't know if I ever will be, and this is maddening, a very anxiety inducing thought.

Over the last year I have dealt more with this lowness of spirit.  I want to dig myself out of this whole.  I'm not sure what is wrong.  Am I depressed?  I don't even entirely know what that means.  However, I do know that I am not myself, that I am physically hurting all the time, that I am a big disappointment to myself and I want to change.  I do not want to live this way.  I want to feel well and live life as fully as I can.  Just be able to roll around, run, play tag with my own children.  My babies who are growing up so  quickly and may someday recall that their Mother was... whatever it is I am right now.  In a rut.  In a whole.  Crying by turns, trying to play along from my place at other times, but here still the same.

Have not been to the pool yet.  Today would have been my first real opportunity to go, but I had a terrible headache.  Tomorrow maybe?  I really must try.

Now for a shovel?  Going to see the Dr tomorrow.  Maybe he can guide me somewhat.  Normally nothing results from these appointments.  Just more suggestions for medication.  I want other options.  Lets see if we can get anything done tomorrow.

Something to sing about:
My husband worked hard this week.  He saw that I was having a REALLY hard time.  Acute pain, and a migraine that just would not go away.  I was a wreck.  The house work was pilling up.  I really had just let it get that way, but it gets worse on days when I am out.  As if he doesn't have enough to do with all his sleepless nights and ALL the work he has to do all day long, he chose to help me anyway.  He washed several loads of laundry and did the dishes.  He even put most of the clean clothes away!  Wow.  What a blessing.  Mr. P also had a BIG project due for one of his classes.  The kind he stays up all night for.  But maybe my mess just got to him or he just really felt bad for me.  or both!  Either way, I am very grateful.  Now I just have to keep up.  It seems I never do.  But its a nice head start for the week.  I'll take it and try to not feel so in the pits about the house (as usual).

An everyday occurrence

For the last, I am not even sure how long, I have suffered from headaches.  I had migraines growing up, took excedrin and that would help.  This is different.  I have had more headaches, probably tension headaches from the upper back/shoulder/neck pain I deal with all the time since the onset of fibromyalgia.  However, for the last two years or so, my head aches have become so much worse.  After a trip to the emergency room about a year and a half ago, all we could learn was that I was anemic.  I have done everything to remedy that, and still the headaches persist just as the title to this posting suggests, EVERYDAY.  every.single.day. I have a headache.  My neurologist firmly believes it is due to the fibromyalgia.  I wish my rheumatologist was someone I could speak to frankly.  I have told him about the headaches.  But I don;t think he heard me.  He was too busy reading the report from the lst appointment.  (insert heavy sigh here).  It doesn't help that I have only seen him once in the last year, getting his PA for all the other visits.   DR. S is nice, and everyone says he is great at what he does.  I guess I just don't have the guts to really be pushy and say, "HEY, something is wrong here.  Why don't you ever do a real examination?  Will you please listen to me?"  Instead I sit there, answer his questions, repeat it l o u d e r because he can't hear me half the time.  Maybe he is getting too old?  Maybe I need to switch Drs?  I don't know how to do that and I'm fearful I will find a lousy Dr.  But these headaches, man, I feel like my brain is rotting.  Praise God the MRI came back just fine.  Are these daily migraines/aches from the fibro?  Does that mean they will never go away because the fibro will never go away?  The prospect of that is enough to drive me crazy.  In my 20s and I already dread the future in regard to my everyday well being.  Really, will it be just years and years of feeling like crap?  Sevenish years down, how many to go this way?

I could really use a cupcake right about now.

5:44pm and we have not been out of the house today.  Gonna go get some cheeseburgers and try to make up for being such a lousy mom now that I have some relief from this headache.  Zomig, you are my best friend, if only there were more than nine of you a month.

Something to sing about:
My children playing together.   J was ring leader/ master of ceremonies of some sort this morning.  Holding a makeshift baton up in the air and saying, "lalies and genelmen! GOD LOVES YOU VERY MUCH."  as N tumbled across the living room floor.