3 Reasons to Be Honest About How You’re Feeling

First let me say I am a recovering fixer & have generally learned the lesson about how people often do not want you to “fix” their problems. Usually they just want someone to listen & understand or sometimes they just want to rant. It is much the same as the way we want & even need others to understand what we are going through with Fibromyalgia. Don’t just be dismissive of them because in most cases the small issues these “constant complainers” are complaining about are just as important to them as our FMS symptoms are to us. Honestly I am envious of them and their small issues. Oh but for the day when those will again be the only often  issues I have to deal with!

I’ve mostly learned this about people trough my own experiences with others giving endless advice on ways to “fix” my “issues” when all I wanted was a shoulder to cry on or someone to just listen until I got it out of my system)
That said…
After spending nearly 11 years not complaining or opening up about the related issues & pain from FMS I no longer keep it to myself because I have realized a few of things since I started being open about how I feel:

1) It only makes our pain worse by keeping it all in or faking it (as I did most of the time) because it is an extra & unnecessary effort that causes stress which can & often does cause flair ups.

2) When we do not complain we are doing nothing to increase awareness of Fibro. I am not saying we should whine all day in order to get the word out but if “outsiders” or to be more PC about it “non-sufferers” don’t know how hard it is pn a daily basis (and don’t hear about our bad days (in addition to our good ones) from someone they know who has this illness – someone who can put a face to an invisible illness that they have only heard about through commercials (since the pharmaceutical companies finally realized there was money to be made in finding treatments) or from someone who knows someone then how are those around us, in our lives & the general population ever going to even begin to understand that we may not look sick but we are sick & how will more people ever learn how real FMS is? The more people talk about it and are honest about how they are feeling the sooner people will stop thinking that it is just some psychosomatic issue or that we are all just a bunch of hypochondriac & that the doctors only gave it a name to make us go away.

3) When we stop faking it we end up saving a lot of energy & feel a bit better because faking it takes more out of you than you may realize & pain is exhausting enough on it’s own. We all know that we have enough fatigue as it is not to add to it by faking or hiding the truth.

Note:
I am not talking about constant complaining here – nothing else would come out of our mouths if we complained every time we were in pain! Nor am I talking about becoming one of those draining people who suck your energy dry every time they are around while they fish for sympathy. I am talking about being honest with yourself and others.

Tip: When people say/ask “How are you?/How ya doin? I usually ask them “Do you want the truth or what I tell everybody?” You’d be surprised how many people actually tell you they were just being polite and didn’t really want an answer! Some however want to know the truth. I respect the “not really group & those in the wanting the truth camp I am grateful for because hopefully they will spread the word.

And for now I will step off of my soapbox because sleep is finally calling me.

Good Night or Morning depending on where you are.

~Heather

3AM EST

A roller coaster day…short note

Yesterday I got my trigger point shots from my doctor – they are not steroids (don’t bother w/steroids because if it is truly Fibromyalgia the steroids will not help) – they are numbing shots. My trigger point injections are used to numb just the worst areas where I have hard knots – sort of like marbles or in some cases golf balls under my skin that can not be broken up with massages (I have much to say about massage therapy but not today). The injections also temporarily break up the knots. Sometimes it lasts for a couple of months, sometimes just a couple of weeks but they offer true relief even if just for a bit.  The knots always come back but any relief is good for me. However the day after I get the shots is not always a good day. Sometimes it is even the worst of days because every spot where the shots were injected HURTS – it’s like my body is rebelling. Thankfully that usually only last for that one day after – so today I was woken up by the pain – and today nothing could touch the pain – at some points I thought cutting my left arm off would be preferable to dealing with it any longer. So I thought “great…fabulous…a really bad day…yee haw!”

But then I won an online contest for an ARC (Advanced Reading Copy) of a new book from a series I have really been wanting to read. And that little thing…a note in my inbox from an author (just getting any email from a published author is awesome enough)…it changed my day. I went over to twitter and told my book blogging buddies about it…did the Twitter equivalent of jumping up and down and was flooded with warm wishes and congrats and teasing jealous comments. All of it lifted my mood. Then one of the other bloggers commented on how she loved my review of the Julie & Julia movie from my BookObsessed blog and an amazing thing happened, a whole bunch of other people started sending me notes about my reviews and how they enjoyed them and started pushing me to put out the post for a book they knew I finished earlier this week but hadn’t reviewed yet. The pain didn’t go away. I spent most of the day with an ice pack and some of it laying down but I did work on the review after the little push they gave me…their support helped me to do something instead of nothing. Nothing good was expected from the day but I was surprised to find good beyond, through and outside of the pain. I didn’t finish the review but it was more than I’d hoped to do today and for me that too changed my day.

I know this is a bit rambling-ish but I hope the point came across regardless. Sometimes it’s not a good day or a bad day but bits of both and you should grab that good and hang onto it because it make the bad not quite so bad. Ahhh…good night, Heather

Love, Guilt, Grief & Genetics

Last night my mother left a comment on the post “Lost in the pain…” which you can find below this post. I felt like I should share what she said & what my response was to offer a little more understanding as to why this blog exists. I will do a complete blog post soon regarding the grieving process and acceptance necessary to live with Fibromyalgia but for now I have this to offer:

From my Mother: Submitted on 2009/09/09 at 12:39am

Hey,
If you aren’t in chronic pain there is no way for you to understand what it is. That is why I watch House. It must be written by people who know people in chronic pain because no one understands what House is going through, just so they don’t understand what we are going through.

I am sorry you got this from me and am sorry it manifested so hard at so young. The only thing I can say is I love you and your father loves you and your sister loves you – as you are now, as you were and as you will be.

Love,

My Response: Submitted on 2009/09/09 at 9:55am

Oh Mom, I do not blame you for this & you can not take responsibility for me having it. It is what it is and it will be what it will be. It manifested in me at such a young age simply because I was in so many accidents while I was in my teens & 20s or even because I had those two episodes of strep throat with 105 degree fevers when I was 22 that put me in the hospital. It is the one thing science has been able to prove about Fibromyalgia that and accident or severe illness will cause it to manifest if you are predisposed to it. I am just having a hard time accepting that it is not something I can overcome or beat into submission. I a going through the Grief Cycle/Stages of Grief (http://www.greaterswiss.com/mourning.htm). I have reached the Anger Stage (Stage 2). I know this cycle is usually used to refer to someone who is grieving over the loss/death of a loved one. In a very real sense that is what having Fibro is – it is a death of who you were. I believe it is the same for someone with MS or Lupus though I have not heard it said about any of these diseases/illnesses/conditions – I know it to be true. I have to accept the death of the person I once was and am no longer and once I do I hope it will be easier to live with. I am going to do a specific blog about it so others who are newly diagnosed or feeling lost after years of fighting it will know they are not alone and that what they are going through is very real and normal under the circumstances.

I loved the TV show House from the very first episode for exactly the same reason as you do now. I do not necessarily expect others to truly understand what myself or anyone else with Fibro is going through – I just have three things I hope to come from this blog: 1) That the people who live with and/or love someone with Fibromyalgia can have a clear picture of the pain and struggle and reality of this disease (it is alternately referred to by the medical establishment as either a disease or a “condition” far as I am concerned it is a disease). 2) To let others going through the same daily struggles know they are not alone and 3) To help myself through the process of acceptance and record my good day when they come and my bad days as they are so when those bad days seem like more than anyone should have to bear I can be reminded of the good days and know another good day will eventually dawn again.

If I can do nothing else with this gift I have been given of being able to express myself & my emotions then at least I offer comfort and care to those who need it.

I am indeed loved by many people and that too is a gift that others may or may not have or may not be able to see that they are through the haze the pain causes. I hope to remind them or be the person who offers it to them.

I love you. Heather

Lost in the pain…

There is a lot of information I have about Fibromyalgia and I will post it soon. But tonight this is just a post about the pain it physically causes & mentally causes and how it effects relationships.

There was a time when I used to fight the pain. I went above and beyond my limitations both psyically & mentally.  Some of that time it was because I had to – there was no one else to help, the kids were young & so was I – a young mother of two that was yet to be diagnosed but knew something was wrong. Once I was diagnosed and found out that there was no way to fix it – I went into denial. The doctors had to be wrong – I must have something else – there has to be some surgery- some way – something – anything. I went to 11 doctors before I finally admitted that this is it and this is my life.

I will be in pain. I will have to rest when everyone else can keep going. I will limp because of the huge knot on the left side of my lower back. My shoulder will hurt and grow a calcification because I think (stupidly) that resting it extra will help instead of make it one more pain to deal with. I will not be the swimmer I once was anymore. I will never do a 60 mile walk again. I can not rollerblade anymore. I will feel the rain coming before anyone sees the clouds on the horizon. I will have to nap even when I do not want . I will need help with most everything and I will live in fear of another accident that will cause a new pain that never goes away. I will have to take medication for the rest of my life and people will think that what I have is not so bad just because it will not kill me. So there is the good news I may live to be 100 and still in pain. That is my lot in life.

It has been said more than once that these problems and this pain would not have been given to me if I were not strong enough to handle them. I have thought about that and also about my feelings on reincarnation which says basically the trials we go through in this life are the lessons we need to learn. Some days like today I just want to scream “NO I AM NOT STRONG ENOUGH – CAN’T YOU SEE THAT?” or “OKAY- ENOUGH LESSONS- NO MORE PAIN PLEASE.”

I know there are people who can do many of the things that I can’t even though they have Fibro but I have tried and I have pushed and I have learned that they have different limits than I do. I have all of the trigger point. I have clusters of hard knots on most of  my body. Some days it is hard to get out of bed – okay well – most days it is.

This is not a kind condition. Not to the person who has it and not to those who live with them and have to watch the one they love suffer.

And no there is nothing I can do besides what I am doing to make it better. I can not just get over it. The more I do the better it will get does not apply here.

I am not lazy. It’s not that I do not care. It is just that everything is so hard and colored by a haze of pain. And I hate it. Some times I still think that maybe the doctors were/are wrong – then I remember that I have to face it and accept it.

The problem is that I do not know who I am anymore – who is this person that can not just do it all by myself? Where did that person go? Some days – like today the pain is so much that I just get lost in it. But when I come out those questions are still lingering, whispering in my head. “Who are you – now?”

I wish it didn’t effect anyone else in my life. I wish I could make plans and stick to them. I wish I could be independent like I once was. I wish I could walk in the rain like I use to. I wish I could just enjoy shopping at a store and wondering the racks with no pain. I wish I could accept that that person is not me anymore. So many wishes.

How strong can someone be? How strong can those who love that person be expected to be? Why me? Why you? Why isn’t Fibro the same for all of us who have it?

All I can say right now is that Fibromyalgia is a cruel “condition” and I pray if you do not have it that you never do and never have to know how cruel it really is.

Posts coming soon!

I have been putting a lot of effort into my Book Obsessed blog and haven’t have the spare energy to devote to this one. But there will be posts here soon. Unless I move this one over to this blog over to blogger…I am considering it.

Thanks for stopping by!