Sometimes, I forget how everything can hurt.  Sometimes, I am surprised by how quickly the pain flares up.  Sometimes, I am pleasantly surprised by how quickly the pain fades away.  Today is not that day.

Today I woke up three hours early just because I couldn’t stand to stay horizontal another minute.  Today I remember how badly I can hurt.  Today I wonder how long this flare will last.  Today I’ll settle for NaNoWriMo and cozy blankets.

Tomorrow I will head back to work.  Tomorrow I want to feel well.  Tomorrow I will be glad I took it easy today.  Won’t I?

What do you do on painful days like today, to make sure your tomorrow is bearable?

I hate feeling like a fool each time I go to the doctor.  I hate invisible pain from an invisible cause.  I hate being unable to drive without nearly vomiting from pain.  I hate hurting so badly I can’t maintain my composure.  I hate when pain demands attention.  I hate that I can’t go more than an hour without mentioning my pain.  I hate that I’m a wuss with new pain, yet am nearly unfazed by fibromyalgia and arthritis pain.  I hate that walking, standing, sitting, reclining, and sleeping all hurt.  I hate pain that radiates and disturbs my equilibrium.

I hate that I hate things.  But I love that the things I most despise teach me the most-needed lessons.

Apparently I am a slow learner.

Anyway… after struggling with mild to immobilizing spine pain for nearly a month, I am reaching a point we all know too well.  When your body and your mind battle to determine just how much you can endure.  When your mind fears for your sanity while your body punishes your nerves.  When you turn inside and wonder how much longer you can live like this.  When you just need relief.

I leave for vacation on Friday, but the thought of a plane ride has me full of dread.  No doctor has been able to help me, and I just keep living life like normal (mostly).  My chiropractor provided two likely causes after examining my x-rays… but I am still in extreme pain.  Please help me!

Have you suffered from extreme spinal pain?

Mine is centered in the middle of my back (top to bottom) on my spine (and a bit to the right).  It is constant but is made worse with movement.  If I lean forward and rest my elbows on my knees while sitting I feel a bit of relief.  Standing just right feels bearable, as well.  Sitting is a nightmare, but it seems the best way to deal with the extreme dizziness I feel as the pain radiates throughout my body.

I apologize for the mediocre writing and the negative tone.  And I look forward to any advice you may have. I just cannot go on feeling this dreadful.

My action plan for the rest of the week consists of:

1. Family Doctor follow-up.  Leave with prior chest and spine x-rays.
2. Appointment with some sort of orthopedic doctor.
3. A massage.  (It hurts beyond belief to lay on my stomach, but somehow I end up relaxed.)
4. Continue to be grateful for a job that allows me to get lost in details and forget myself.
5. Offer my appreciation to the many examples of discipline and strength that motivate and humble me.
6. ?

What do you recommend I add to this action plan?  I am open to all suggestions.

Thank you!

To those of you who have already shared your advice and experiences, I thank you for your time and support.  I will follow-up with you when I get feeling a bit better.

What do you do when the only way to make it through a day is to gut it out?  What keeps you from falling apart?  What brings you strength of mind and body?  What gives you the mental stamina to endure?

I’ll be back tomorrow Friday someday with my answer(s).  In the meantime, please share yours.  I look forward to your contribution, example, and advice.

It depends on my mood.  And how a person makes me feel.  And where I am.  But mostly I don’t tell them unless I have to.  In fact, since my diagnosis in 1998 (at age 14), I have lived in (minus my 10 semesters at college) the same small town.  And, during my flare up last spring, I learned quite a few people whom I have known for the entirety of that time had no idea I have a chronic illness.  I consider this amazing.  They are either… very kind and gave me the benefit of the doubt on countless occasions, or very forgetful.  Either way it meant a lot to me.

On the other hand, it means just as much to me to think of the hundreds of folks who know I struggle with health challenges.  They haven’t made it their business to tell people.  They haven’t made it their business to make a scene when they can tell I am not feeling well.  Quite the opposite.

Anyway, back to the point.  When I have to tell folks I just say it.  Something stupid sounding, I’m sure.  But I always say it matter-of-factly.  “I have fibromyalgia and osteoarthritis.”  I then typically downplay whatever symptom or situation has necessitated my discussing my invisible illnesses.  And I am usually tempted to crack a joke.  But I typically resist the immature urge.  Because it’s not a joke.  And I don’t treat it lightly (that doesn’t mean I act like it’s the end of the world, either).

Live Well, by SilverRiverMetal

Once I’ve told people I’m pretty open.  I don’t inflict more pain on myself by trying to mask a limp as I walk (like I normally do).  I am myself.  And I don’t pretend to be otherwise.  Frankly, once someone knows I feel more comfortable and less confined.  WARNING: I find that this can be dangerous.  I find that the fewer people who know about my health issues the more motivated I am to live well.  (And I don’t mean well as in good, I mean well as in not ill.)  The more motivated I am to level with the fact that there are countless things I can do with fibromyalgia.  (And very few things I can’t do.  For the most part I lead a very normal life.)

When people know about my fibromyalgia it is especially important to stay motivated and to refuse to excuse an effort that is inconsistent with my capabilities.  I think this is the biggest struggle for me and my fibromyalgia… as I discussed here and therefore fall short of our purpose..  And, to be honest, I think it’s a healthy and helpful one.  It is far too easy to fall pray to excuses (although there is plenty of room for reasons with fibromyalgia).

So whether your new friends know, or don’t, remember they can challenge us to find the limits of our capabilities and push them slowly.  Kinda like stretching.  But be careful not to over do it.

To be honest, I am not convinced my answer to this question is the best, so I want to put this out there for as many responses as possible before I publish my own answer.  Please opine via a comment on this post:

When you meet new people do you volunteer the fact that you have a chronic illness, or do you wait to discuss it until it becomes an issue?  When you tell them how do you bring it up?  What do you say?

You folks are always so inspiring and honest.  I look forward to hearing your responses.  Thank you for your help.

I will post my response tomorrow night.

…As all of you know, many people just don’t understand this condition.

I was diagnosed with A-typical Fibro and MF back in Dec.  however, my current physician though not a specialist, thinks my condition is more than Fibro.  However, without having an income or medical insurance I cannot see a Neurologist to verify what exactly this is.

I really don’t know how you all deal with this, I guess some people are more fortunate than others and have a support team.  I’m at a point that I can’t bear to tell my family any more of the pain and suffering I deal with daily.  Unlike you, I do have to suck it up and pretend I’m doing ok.  I’ve already lost all of my friends I used to work with because none of them understand, they think it’s all in my head.

Some days, I’m just tired of the constant battle.  But I try to find something to enjoy within each day.  Does anyone else ever feel like curling into a ball and just hiding from the world?

Well it’s time to feed my cats and take another round  of meds.  Maybe today I will even try to go for a walk in the woods.  Sorry to put a damper on every one, I hope and pray that all that read this have a wonderful, happy and easy day.  Thanks for listening.

I feel strongly that as a community it is important for us to come together in support of each other.  With very little known about fibromyalgia what we know is priceless.  We need to make sure we share our knowledge.

Thank you for your continued support and involvement.  And as always, I pray we may all find lessons and blessings in our fight with fibromyalgia.

P.S. To the dear reader who sent the aforementioned message:  I will e-mail you my personal response.  Later today I will write another post about the first few things I did following my diagnosis.  I will again call on readers to share their advice.  Finally, I will write a post tomorrow to discuss health care options for fibrofolks.