Burdens

So here I sit, wanting to cry.  But tears seem to have escaped my eyes.  My heart is heavy with burdens that I can't seem to settle.  I worry for my daughter and the decisions she has been making.  I see her struggling, and there is nothing I can do.  My illness takes over and I feel the pain, not only in my heart but piercing through my body.  I carry this like a suitcase that is too heavy and to large to manage.  I feel desperate as I can't move it or even slide it to get through.

My husband is angry.  He has worked three weeks in a row without a day off.  He is stressed and frankly so am I.  His negativity eats at my soul, trying to swallow me hole.  I hold on as if I am grasping at straw at the top of a large whole, hoping to find the piece that is strong enough to pull me up.  I don't know when I will find the strong enough piece, but I still hold on.

All the drama and sadness that is surrounding me is swallowing me whole.  I am fighting the demons to stay positive and find the tunnel of light to escape the horrible scene.  Where are my tears, I can't find them.  I need a release.  Help should be right around the corner, but do I have to master it?  I've made some calls trying to reach out.  Will they help?  I don't know. 

I cannot continue to live this way.  The damage this is doing to me is not exactly known yet.  But it will not be good.  Yet I am here to fight the fight anyway I can.  Darkness has overpowered my family, and I need to find the light to escape.  What it will look like in the end I don't know.  But I will survive.  I am strong.  I just need to find that power within me to continue a few more days.

Struggling

Life' journey continues to be a struggle.  I have been in so much pain, and nothing seems to help.  I have seen the chiropractor three times, it hurt so much during the adjustments, and I still have no relief.  My arm continues to tingle and have numbness from my shoulder to my fingers.  I don't think this is the FM.  I believe it is from the top of my back below the fusion in my neck.  This scares me.  there is nothing that they can do because I have no more stable discs in my back.
So life must go on and I must learn to deal with it the best that I can.  Which isn't easy for me, or anyone around me.  I just am scared of losing function completely in my arm, especially since it is my dominant arm and I write with it.  I feel like a hen pecking at the keys, as i can't even type right anymore.
My ear is still clogged and I can hear out of it on and off.  Mostly just the ringing though.  which completely irritates the crap out of me.  No pain meds....  Which has been challenging itself.  Tramadol, but it is like I haven't taken anything.  It doesn't work for me.
I just want my life to be simpler.  I don't want to deal with all the drama that goes on in my life with my family.  Sometimes I just want to run away and not look back.  it's not like I don't spend all my time alone anyways.  Now I am just babbling.
Well I have company so I need to cut this short.  my adoptive daughter is here!  Time to spend some quality time.

Pain

As the Holidays round the corner this next coming week, I find myself wondering what I need to do to stay calm.  Usually my stress peaks out, but it has already done that and I am finding myself on the down side of things.

The pain I have been in lately has been about an 8 on the pain scale.  Each year, month, and day that goes by, i find myself testing my limits of pain more and more, pushing through what i need to.  My ribs and breathing being affected really stinks.  I shake from the pain, as I have no pain killers.  The darvocet I was taking has been taken off the market, and my doctor replaced it with tramadol.  I doesn't do anything for me, it's like I am taking nothing at all.  I have an appointment to see my doctor, but it's not until the 30th of this month.  So I am focused on meditating and doing very, very little. 

I still put on my fake smile and go about as to not be looked at like, "again?"  People need to understand that it's not again, it's all the time!  It's not one area over another, it's all of it all the time.  yes sometimes an area can hurt more than others at times, but it all hurts all the time. 

My body shakes as I try to control how it feels.  My arm is weak, and I have loss more and more function lately.  I probably have a pinched nerve again but in my upper neck from all the inflammation I have.  It tingles from my shoulder to my fingers.  I am dropping things and fear what is happening.  My ears ring, and my right ear still feels like I am underwater and everything echos.  My jaw aches, and every now and then a stabbing pain goes through it.  My ribs quiver as I feel the pain shoot through them from my back to under my breast.  I feel as if I have a cement block sitting on my chest.  My legs shake and spasms run through them along with pain that starts in the groin and it feels as though ice is being stabbed into my nerves and scrapped down the nerves from the groin to my knees.  My hip throbs as i try to walk.   Even sitting in any position is unbearable to a short extent. My feet and calves spasm.  I keep telling myself, "you can do this!".  And I will.

I've had a headache for days, I really wish it would just go away.  My sleep is disturbed and I feel so exhausted that I wish i could just fall asleep and stay asleep, as I have a hard time with both.  I need some rest soon, as the pain gets worse with the more lack of rest I have been experiencing.  Someday soon.  I will survive, I always do.

Could it be any Harder?

As the days in my life seem to pass me by, I keep questioning my thoughts in my head.  Life is hard, but will I make it harder?  If i give up on my relationship, what will happen?  Will anyone ever take me as I am or will i just be stigmatized?  My nights are lonely.  My life is lonely.  I just want to live my life with no regrets which i thought I was doing, but I am so unsure now.

Living in a fibro fog is frustrating.  I started effexor a couple months ago, and it does help with the fog, but I still have some days that I couldn't tell you what i said right after i said it.  It's very frustrating for me, and I am sure it is for others around me, especially my husband.  Lately he gives me the vibe that he is thinking I am lazy.  He'll ask me to do something, and I completely forget.  i don't do it purposely, it just is that way.  And he gets angry and walks away uttering something under his breath.  I can feel his resentment for me.  I am not imagining it at all.  He'll comment, "So you did nothing again?"  And he refuses to learn about the fibro and what it all entails.

I am thinking we are just together now because it has been twenty some years!  I don't see him happy at all.  And frankly I am not happy either.  Since starting the effexor, I have had a little more clarity and I am noticing things in our life that I didn't notice before.  So I guess that med is working for me as far as cognitively recognizing things I hadn't before.

I don't know where I am going from here.  I am not sure what journey I am going to take, but I know I need to make a positive change for myself and my health.  I need to make it good before its my time.  I need to have happiness in my life, and reject the negativity I have been living in.  Each day a part of me vanishes, and I need to stop being in denial of everything.  This can't go on forever.

Confusion

I am so confused lately, actually for quite sometime.  My life's journey has been sporadic at best, sometimes even crazy would be the best term to use.  Sometimes the things worth living for the most can drive you to the brink of insanity.  Children, spouses, grandchildren, relatives and friends.  Why is it the ones we love most hurt us so deeply?  Forgive me if I am acting strange, I am not in a place of despair.  I am just thinking.

I try to be the best person I can be, but sometimes I think I could do better.  I caught myself purposely making my daughter and husband angry with me.  Why would I do that?  I am not sure of the answer.  Is it because I feel taken advantage of in so may ways from them at times?  I don't know, it is possible.

Lately my pain is so deep, it feels like icicle's running up and down my legs scrapping the whole way.  What can a person do to deal with this?  I don't really know how I get through because I know meds don't work.  The pain in my groin is so intense it makes me clench.  I have a double ear infection that hurts my jaw (TMJ) my neck, head and side of my face. 

As if i didn't have enough to deal with!  I try so hard to pretend I'm fine, that my husband roles his eyes if I say anything.  How would that make you feel?  I know I hate it, and it makes me think, do you really love me?  I mean, I know he loves me, but is he in love with me?  I don't think I can say yes to that anymore.  Which really breaks my heart.  Then I ask myself am I in love with him or do I love him?  And I can't answer that anymore either.  I struggle with so much, I get confused and I am unsure of everything.  I don't trust my judgement anymore.

Looking back at life I see all this ridicule, and hurtful words that have gone on between the two of us.  I think I have just been afraid to even think about it.  I feel I have failed him as a wife, which who cares what other people think, but is that what he thinks?  Intimacy has been out of the question with the areas of pain I have for the last year.  And I feel he doesn't care anyways, which as a woman is insulting to me.  This is pretty private to be putting out there and he would be pissed, but he don't read this anyways so it don't really matter.

I used to work as a behavior analyst for the state of MN.  I always had my shit together, not really.  On the outside it looked like it.  I was so good at hiding my insecurities and I was so proud that I could accomplish what i had in my life.  Meanwhile inside I felt as if I were dying, and I know a couple people knew, but for the most part I looked like I had it together.  I thought I felt strong then.  But I wasn't.  I was probably more vulnerable then, than I am now.  I worked with dual diagnosis clients and frankly sex offenders.  Everyone would ask how I could separate myself from the offenses that the clients had committed to work with them.  I just did.  They were people who had issues that needed help, and that is how it was.  With everything I have been through in my life it is odd that I ended up working with that clientele.  I think it was the search for understanding.  Which I don't think anyone can really understand it, but I tried really hard.  I have this part of me that needs understanding of others and their actions that kind of keeps me going.  Injustice is something close to my heart, and I feel like I keep thinking if i could just find something to connect with to understand why, things will make sense.  But telling a person that you molested them because they threw rocks at their pig, I don't even know what to say!  What kind of response are they looking for?  I will forgive you for throwing rocks at my pig if you forgive me for what happened.....FUCK!  Sorry, it is incomprehensible!  So yes as you might have guessed I am talking of my self.  How rotten and horrible is that?  I guess I thought if I could understand where that kind of person is thinking, I would be able to move on.  For the most I have, but it needed to be said.  there is no reason to hide it as far as I am concerned.  It happened, its in the past, I can't change it, it's part of who I am and who I have become.  And to be honest, I don't mind who I am.  I feel I am a strong enough person, with well meaning intentions with any relationship I have.  If people don't like me for who I am, then that is their problem and not mine.

Pain is covered by what I hide inside

Is God really on my side

I am down on my knees

begging you please

can you help me

Could it be any harder to face whats true

for I feel I am living my life without you

If I can get by just one more day

I promise you I will try to stay

If you take a look at my face you'll see

I've never left, would you look at me please

If our life is over, it will be ok

For I know I will see you another day

Demons

So I am battling my own deamons as of now.  Between my pain, exhaustion, depression, anxiety, and just general feelings of hopelessness!  I am trying to be strong, and stick to my guns about the decisions that I have made, but it is so hard.  I am so isolated, that I wish for closeness from anyone.  I can't say that my husband isn't trying, but he is in the middle of a conflict I am having right now with my daughter, so I really don't feel calmed by him right now.

Children, your own, can be so mean at times, and I am having that problem right now with my daughter.  We are so close, in fact too close, so that is what makes it so hard for me.  But I am taking a huge leap back, and staying there.  She is an adult and she needs to stand on her own two feet.  And that is exactly what she has to do now.

Since we are not even on speaking terms, my heart really aches, but I can not give in.  I always give in to her and that has to stop, and the only one who can make it stop is me.  I need to hold firm on how I was hurt, and stand by my emotions, and not just let it go like it never happened.  That is how I get myself in to these sticky situations that I shouldn't be in.  It is time to put me first and stick to it, no matter what.  No more making me feel guilty.  I will not allow it.

Everytime I give in the moster grows, the anxiety sets in, and the illness increases.  Even though I am sick now with a head clod from being so stressed out, I will be better than putting off the inevitable, and possibly getting so sick I end up in the hospital.  Nothing but rest for me lately.  That is all the energy I have.  Do a little, then rest.  No more running, and doing this, and doing that for others.  I need to take care of me, and by golly I am!

I am taking back my life, one step at a time.  It's not easy.  And know one really gets it.  I am doing the best I can though.  I am still surviving!

Battling Back

Ok, I am on my way back up from my breakdown the other day.  Trying to stay positive is sometimes impossible!  But I am here, and I am moving on.  I have slept a lot the last couple days, and feel as though I need even more!

Coming out of a major breakdown takes forever.  Not only am I dealing with pain, and loss of energy, I still need to deal with what put me in that position to begin with.  So I have been, and it isn't easy.

Sometimes I just get so overloaded, that I just snap!  I cried for two days and completely lost it on pretty much anyone around me.  I had reason to snap, but I hate getting to that point.  Problem is reminding people, hey I am sick!  And I shouldn't have to.  I think I go through this at least every six months.

Family and friends forget.  They see you going about your day and just assume you are doing fine, even if your not, you hate saying you feel like crap all the time!  Then your whining and they tune out anyways!  This is why I think I don't say much.  I don't see the point in it.  As long as I am moving around, I must be fine...

Like I have posted before, "if they could only see the pain inside!"  then they would know.  That is what makes this syndrome or whatever the heck they want to say it is almost impossible for people to understand.  Although, you can see the pain in my face.  I don't hide it real well when it gets to the point of, OK in my bedroom, leave me alone!  But I try not to do that because it is so depressing.  So as the saying goes, I am fine.

My life has changed so much, that at times I look back and think, wow, I really have lived life if you look at all I have done, and the fun I had!  So I can keep going knowing I didn't let much get pass me when I was healthy.  I did have a lot of fun, and now I just need to relax, and take a deep breath and what happens, happens.

I need to be strong.  It's the only way to fight this beast inside me.  The only way to keep living.  Never give up, or it will win, and that can not happen!  I won't let it because I AM A SURVIVOR!

feeling lost

So as of my last post, I have been trying to hold my own regarding my boundaries with my daughter and others.  Well it's working, but not necessarily in a good way.  My heart feels so open, hurt, and empty.  I have been crying for two days AND I don't know whats worse, the way it was before or now!

I just feel like I have to work to so much for others to understand, and frankly, I don't have the energy!  Why is it that it's my problem when it's not?  Why am I crying?  Why do I feel shitty?  Is it that this is what is meant to be?  I don't know anymore. 

I am trying to burry the pain and go on, but going on means relationships being broken at this point, and I don't know if I can handle it.  I know I am a strong person, just with all I have dealt with, but this is like looking straight into the sun where you really can't tell what the hell is what!

I am really feeling lost and all I have is this stupid blog that no one cares about anyways but me.  You think my family will read it? No I feel like I just need to be saved right now, even from myself.

My thoughts keep going places where they shouldn't go, and I question everything I am feeling.  It's like everytime I am finally at the place of moving on from this point, it all comes crashing down around me, when all I want is for them to reach out to me, and be there for me.  I don't think it's that much to ask, but the it's futile to them.  My world is spinning around on this merry-go-round, and all I can do is watch it spin out of control until I am sick.  And all my heart desires is for them to believe, and love me for me, sick or not, and not push me to the point of breaking, which is how it has been.

With my daughter, easy answer, get back on your meds!!!  Can I say anymore?  Get rid of the trash in your life and move on.  Damn!  Her ex's, leave me the fuck alone!  My husband, fuck just be there when you should, and quit being so damn judgmental!  Take a look in the mirror buddy!

I am ready to explode or implode, one or the other!  It's coming, and it scares the hell out of me because who knows what is going to come out of my mouth if I explode, and if I implode, I am hurting myself just as much.  I am lost right now!  The tears won't stop flowing, yet I can't and won't talk to anyone!  I don't know which way to turn.....

Understanding

Life's journey for me has taken many twists and turns.  What I have learned is that not everyone will stand beside you.  Some take a step back and leave.  Some step forward and help guide you, and others will hold your hand.  But no matter which way a person goes, it was meant to be.

I was watching "Joyce Moyer" this morning at about 5:30, and the message was as if it was for me.  I was suppose to be not sleeping and turned in to her on the television.  She was talking about people wasting time on their fears, and what a waste of energy it is.  This is so true!  Just because I am the person to take on the worries of everyone around me.  I myself know I should not do this, but continue to. 

Today is a new day and I am going to start listening to what I know is right, and let the rest go.  Easier said then done right?  But it is a goal for me.  I keep crossing those boundaries, especially with my daughter.  She is going to live her life the way it is intended for her, and I can not interfere, nor can I worry about every decision she makes.  It's not my place, and it's not intended for me to take on those worries.So as I continue to make decisions for myself, I am consciously choosing not to take on any extra worries that I have no control over anyways, and I give those worries to God. 

I want to live my life as much as possible.  I am a strong woman in my heart, and my mind.  People mistake my strength as a way for them to dump on me, because I can handle anything.  Well this is true of the old me, but now I can not allow this to happen anymore.  Truth be told, it was never healthy for me, but I was living at such a fast pace, I didn't take the time to really get to know me!

Although being stuck with a chronic illness has slow en me down, it has also been a gift in a way.  I know that sounds crazy, but it is true.  Had I not gotten sick, I would probably be divorced, and not have had a chance at a close relationship with my daughter, mother, father, and sisters.

My husband and I were arguing all the time, we never spent any time together, and niether of us were happy in the relationship.  He did his thing, and I did mine.  But never together.  We talked about getting divorced, but we knew deep down we did love each other, but we didn't know how to fix anything.

My daughter and I never spent time together, and she always said I was never there for her.  Which I could not understand.  I was there all the time  and in her corner when she needed someone there to help.  But what she really meant was I was not emotionally there for her.  And as I looked back, I really wasn't.  I would work all the time, then go home and sleep.  She felt I was never really there, even though physically I was.  It took me years to understand that.  Once I realized what she meant, I felt horrible.  I apologized and swore that would not happen again.  Although I can't keep that promise on my bad days, at least now she and I know why.

I didn't have a very good relationship with my parents.  At least not like a close relationship.  We never talked, never said we loved each other, and pretty much saw each other on Holidays.  That all changed when I got sick.  My parents were by my side through every surgery, every appointment for injections, every time I just needed someone by my side.  Had I not gotten sick, we would of never talked about the past, the future, or anything else.  I now tell them all the time that I love them, and they do the same.

I never saw my sisters before I got sick.  They would invite me to their homes on Holidays sometimes, but I would never go.  I just felt like they didn't really care about me.  Being the youngest of six kids, they felt I was favored, and always threw it in my face and were extremely mean about it.  Now I will go stay with my sister in Winona, it is so beautiful there.  And we talk a lot, and share our family lives together now.  My other sister is closer in distance to me and we get together whenever we have gas money!  Had I not become sick, I don't think anything would have changed.

So although I have a chronic illness, with extreme pain, I am thankful.  I have my family as a whole now, and a husband who loves me and has stayed by my side through all this craziness!  Isn't that what we all want?  These beautiful relationships with the people who mean the most!  I have to say, I am lucky, illness and all!

If you only knew me

If you only knew me;

You would know I am in pain everyday,

and I pray everynight.

If you only knew me;

You would realize I cry to myself at night,

hugging my pillows tight.

If you only knew me;

You would understand I don't feel strong,

infact I feel powerless in most situations.

If you only knew me;

You wouldn't ask how I am doing,

you would already know my answer.

If you only knew me;

You would know how the littlest bit of stress affects me,

and leaves me bed ridden for days.

If you only knew me;

You would know my heartaches,

and wants to join in life again.

If you only knew me;

You would know I want to be held,

ever so softly in your arms.

If you only knew me;

You would know how many times I have been to the edge,

and cried myself back to reality.

If you only knew me;

You would know I grieve my past life,

and I continue to go back and forth.

If you only knew me;

you would know it is all going to be fine,

because I am here today!  And I plan to stay!



Winter

I woke up this morning to a winter wonderland!  If I could only enjoy it.  I hate the fact that winter is upon me.  This appears to be the worst time for me.  Someone just opening up the door, and a breeze coming in, goes right to my bones!

Why is it in the winter, everyone seems to be in such a hurry?  Driving 80 on the freeway is not going to get you anywhere faster except into an accident.  And hopefully your not going to hurt someone else!  I find it frustrating.  I don't drive when it snows.  I have a hard enough time seeing in perfect weather, I sure am not going to risk my life out there when I can't see anything.

I have been very busy lately.  Mostly in my head thinking of how to move forward with a support group.  I am still thinking on logos, and because I want everything perfect, I am kind of stuck.   I do realize that it is not the logo that is important, it is the group itself.  I just need to start, and the logo will come.  I am still trying to figure out where the meetings should be.  Probably in my home until I get people to attend then move out into a place that is reasonable for all in the group.  As you can see, I am talking to myself as I am typing.  I tend to do this a lot!  It helps me though.

Last evening I went to a play called "Nickel and Dimed".  It was so good.  And so true about working class families.  the poor staying poor, and why.  It hit me right in the heart!  People and situations in life can keep people poor.  It's not laziness or general unwillingness.  They seem to have more survivor instincts then most human beings.  I've been there living in a vehicle with a baby!  The struggles I went through finding a place to call home, waiting on a list to get a home.  I remember those days always, As to never forget where I was, and where I am now.  I think that is an important character in people.

I realize I am all over the place today.  I can't help it.  I can't concentrate at all.  So for now I am done.  Maybe i can get it together later.

Vulnerabilities

I know I had become lost again for awhile.  The stresses in my life continue to flutter all around me.  I am again setting my boundaries and saying no, and trying to make the best decisions for me.  I wonder why I have to keep setting the same boundaries.  I know I break down easily, and I know it is because i just get so tired of arguing my point.  Family and friends sometimes seem to forget that there is a real reason why I say no.  But they also know that if pushed just enough, i will give in.  I would have to say that this is my fault for giving in, but it is also wrong of them to push me.

It's because of my exhaustion that I give in, which is totally crazy because usually it it means me having to do something that is going to cause me undo stress and exhaustion even more.  So my battle again is with myself to stay strong.  But as anyone with a chronic illness knows, it's not that easy.  I don't think my family intends to cause me stress, more illness, and exhaustion, but it happens enough. 

I think at times I also say yes to feel needed.  As I tend to feel useless to them, even though they are there and say they love me and to never feel that way.  they don't like me feeling alone and stressed.  they do know that I get really bad flares where I can hardly get out of bed and dressed.  And my flares tend to last along time, and then i am good for a day maybe two, and I go into another long exacberating flare.  this is how i live.  I realize that i am the key to my health.

All my life, I have been considered this strong person.  Physically and mentally.  But I hid so much from so many people.  I never wanted anyone to know how vulnerable I really was.  It didn't matter though, certain people were able to see through me and get into my vulnerabilities and make me feel ashamed, guilty, and just like I was wrong for what I was doing or what I was saying.

There was this guy when I was 19 that I was dating.  he was a master of confusion for me.  I was on the outside technically not  afraid of any thing or anyone.  I had put this wall up around me to not let others in.  This guy would tell me what to do , how to do it, and when to do it.  He was very violent.  He threw me into walls, would punch me, and he was so verbally abusive.  I couldn't believe I was in this relationship.  We had only been dating two weeks when the switch got flipped.  I was scared and had no idea how to get out.  I can not imagine how women can stay in such relationships, yet i understand the fear of leaving.  this relationship of mine lasted a couple months before I finally got out, and a restraining order didn't help.  But, my now husband did.  I will not say how, but that guy and his mother left me alone after an intense confrontation.

Bruce, my husband is not a very affectionate person.  He only sees thing as right or wrong, and there is no middle.  I know that affection for him is very guarded and rendered only to someone he truly cares about.  Even then it can become fleeting.  I have to laugh because I know he loves me dearly, but he has the strangest ways of showing it!

Getting back to that futile relationship I had, It changed me.  I now was scared of people again.  I felt like that child being abused and threatened, and in that relationship I froze in that state. Which is why it was so hard to get out, I always felt wrong.

After that, I became reckless.  I didn't care about my life or what might happen to my daughters if I wasn't around.  (to which she was born my senior year of high school with my on again off again first love)  I became this party girl always looking for the next party.  And boy, did I party.  But eventually it got old.  I wasn't happy and I knew it.  I needed a change, and a change I had to make to stop all the madness in my life.

Taking back me!

I have been very sore this week.  Dragging myself out of bed and trying to grasp some motivation to do anything has been exhausting.  I really haven't done much this week , but I managed to go to my massage therapist.  I do have to say that it wasn't relaxing at all this time.  My muscles were so tight, she couldn't get them to relaese at all.  So if that tells you how sore I am, imagine being in that much pain.  She worked my glutes as well.  My right hip is bad because it is inverted somehow inside the inside joint, and is full of arthritis.  This gal found every nerve ending that was screaming in pain this time!  As she worked my legs she hit the nerve by the knee on the side and my left leg from the knee down to my toes went numb.  I always find it so weird that she hits all these spots and how my body reacts to it.

I talked to an old friend this week.  In fact she came over and visited several hours yesterday.  She has been diagnosed with Fibro as well.  She is having such a hard time with it.  I remember being there some years back.  We talked, and talked about how her life has changed and no one understands her, and her husband says she is just lazy.   It really made me angry, but I just looked at her, smiled and said, it will be ok, I have been there, and I am here for you now.  She started sobbing a bit then composed herself and actually smiled a bit.  It felt so good for me to offer an understanding and compassion of what she is going through!  I didn't have that, and I remember how isolated I felt.  And I am so glad that she and I found each other again!  Although my week has been rough, I have found this little voice inside of me that is ready to reach out and do something extrodinary!

I know I have wonderful capabilities in me to help people, I have just been surpressing them because I don't need anymore stress in my life.  But now I am thinking this is my chance to do what I really have been craving to do, which is start a support group for people with chronic pain.  This area in northern MN, has no support.  People don't have a clue what it is, and people have no support that do suffer.  And according to one of my friends that works in a clinic up north of me, there are a huge amount of people with fm and cfs that just seem lost.  So why not do this!

I used to work as a behavior analyst, and I do miss my job.  I miss feeling like I accomplished something good.  Afterall, I am that people pleaser, and that is what I need to be careful with.  Setting boundaries and not crossing them.  It's funny how a lot of people who have had issues in their life end up in a psychiatric career of some kind.  In one role or another.  I remember going to college and just craving the information, and so much wanting to learn everything I could.  I loved to learn new things.

I am becoming a new person that I actually like again.  Even though pain still interupts my life, I will not give in.  At my lowest point I entered counceling and continued to go for three years straight twice a week every week.  I worked hard to get to where I am at today.  I still have some really hard days where I get depressed, but I go on.  I know I have to!  And not necessarilly for anyone else, but for me!  I want people to understand that, yes i am sick, and no you can't catch it, and yes i have good and bad days, but most of all, Don't judge me!  I believe that this is an important lesson for this community to learn.  I need to do this for me and all the others who suffer, but getting it together is going to be a lot of work!

As I continue this journey, I expect ups and downs.  But I know I will survive!

I Will Survive!: I talked to a long time friend this morning who wa...

I Will Survive!: I talked to a long time friend this morning who wa...: "I talked to a long time friend this morning who was recently diagnosed with FM. As we were talking, I kept thinking in the back of my head,..."

I talked to a long time friend this morning who was recently diagnosed with FM.  As we were talking, I kept thinking in the back of my head, "I was there".  I could here the pain in her voice.  And not just the physical pain!  The pain of being scared, the kind that eats you up!

Chronic pain illnesses rob you of every asspect of your life.  As I explained to her, you grieve.  You  grieve for the life you once knew, you grieve for your loss of functioning, you grieve for an income, you grieve for yourself as if you have died.  Then there is this person, that you don't know, and don't want to be, standing there looking back at you in the mirror.  You look the same, but every part of you is different, and unknown.  It is one of the scariest places to be to not know who you are anymore!

You question everything in your life that you once knew.  Your angry!  Angry at your body, angry at yourself, angry at the doctors.  The anger burns inside of you, and when it does, you create all this stress inside that makes you feel even worse.  Then to have nobody to understand what you are going through is the hardest part.  One day you can walk a mile, the next you can't get out of bed.  Family sometimes have the hardest time, because they see you on a daily basis.  It's like well, you did this yesterday, and now your saying you can't move because your in so much pain?  They tend not to understand and need to be educated by you, your doctor, or just leave them articles to read!

Everything I have been through to this point has been a huge obstacle to overcome.  Some days are better then others, but that pain is always there.  Deep down inside you.  You try to continue living the way you used to but it doesn't work anymore.  You eventually come to the understanding that you have to make amends with your body, mind, and soul.  Once you can do that, and let go of some that negative energy, you are able to at least deal with your life. 

Knowing first that you never commit to something down the road is so important.  Now is when you start living day to day, hour to hour, and your life becomes a little more managable.  Destressing your life is not always possible, as I very well know, but if you can start managing your self, you can at least save some stress from happening.

I have a hard time with stress.  I have a daughter who is ill, three grandbabies, and a husband who likes things a certain way.  My life is full of stress!  I tell them all the time, "we will see".  It's my first words out of my mouth these days when asking if I would like to do something.  My husband has gotten a lot better with it, but my daughter is so stressed herself these days, she doesn't hear what i am saying. So it gets hard for me.

Guilt is a huge problem when dealing with family and close friends.  I always feel guilty even though I know I shouldn't.  I am the person in my family that was somehow picked to be the go to person for any family problems.  Even after I became disabled, I am somehow still that person.  So when something needs to be down for my parents, I am there.  I know how much they appreciate it, and I know they worry about me.  I am the youngest of six kids, and I purchased 40 acres from my parents years ago.  So I am close to them.  Even though my two brothers are actually across the street from them, it is still me.  My doctor tells me I am the glue of my family, all of it.  He tells me to slow down, but then tells me if it weren't for me, who knows what my parents would do.  So How do I stop being the go to person with that on my concious?  I can't and I won't.  So I take it on willingly knowing it isn't actually the healthiest thing for me to do.

Life isn't always easy, but at least I am living it.

Pain and Frustration

Waking up today was not a pleasant experience.  Pain running through my neck and shoulders, down my shoulder blade and around my ribs.  It is frustrating that this pain is always there, and only lets up here and there.  I started having spasms last night, and by this morning it was exruciating!  I can barely get my right arm to work.  I went to brush my hair, lifted my arm, and it came flailing back down as the pain intensified and a severe spasm started.

For most people the thought of being in pain makes them cringe.  They don't really understand what it is like for someone to be in pain all the time.  Yes, we fake it and go on with our day, and we suffer in silence.  Inside we are dying to scream out "Help Me"!  But we don't.  No matter what we are strong!  Doctors say we are more susceptable to pain and we feel pain more then others.  I don't by it!  I know I can handle a lot of pain, and I don't say anything.  I just keep going because that is what we are suppose to do right?

I grew up on a farm.  I worked my ass off ever since I was a child.  So to not be able to do simple tasks like brushing my hair, or brushing my teeth, frustrates me to no end!   How do you explain that kind of pain to someone?  They look at you like you are crazy and making it up.  I can't or should I say don't tell my husband much anymore.  I feel as if I am just complaining, and honestly he doesn't want to hear it!  Not because he doesn't love me or care or thinks I'm faking, it's because he doesn't know what to do or say, and all he would like to do is fix it for me!  He can't handle that I am in pain, and he can't do anything to help or fix it.  He is a fixer, I think most men are.  They like to fix the problem.  I can't imagine the frustration he goes through on a daily basis knowing he can't fix it, he is the sole provider, and he has to take care of the house as well.  I know it has to be overwhelming, and I feel guilty for that.

So yet again the guilt eats at me, even though I know that there was nothing I could do about it.  I didn't ask to get sick.  It wasn't part of my plan or our plan!  We were suppose to be so active and go four wheeling , and hiking, and so much more!  Now I am unable to do the things I enjoyed the most.  I am not the person he married anymore, and at times I tend to push him away.  His father was sick his whole life battling cancer.  He was in and out of hospitals his whole life.  My husband hates hospitals, and it triggers anger and anxiety for him.  So now he is married to someone who is sick all the time and has had several major surgeries and is in and out of the hospital all the time!  This is not the life he wanted, and I know this.  I am so frustrated and at times I just hate myself for ruining his life.  At least that is how I feel.

Managing Stress!

Where do I start.  My life has so many stresses in it!  Every time I turn around it's something else!  I purchased a car recently and I can't get the DMV to transfer it into my name.  There used to be a lien against it in New York.  New York released the lien in 2002, but the DMV here is saying that  it still has a lien.  I even had a paper from the bank in New York, and they still won't let me!  So now I have to fax a copy of the title to the bank so they can send another letter out addressed to me saying their is no lien!  Sometimes I swear I have the worst luck.  I also purchased a van recently that was used in a robbery, and then it got impounded a week later for having the wrong tabs on it.  It had tabs for a ford pick up.  Oh, and the plates were bad!  So I had to put out $600 for the van a couple hundred for insurance, $173 for the impound lot, and $47 for plates and tabs just to have to buy new tabs in a couple months.  Talk about frustrating.

Stress can make or break my day.  Today is a horrible day.  Trying to not stress out about the vehicle issues is hard.  I keep having to do deep breathing, but it hurts to take in deep breaths.  My back and ribs hurt so much.  Not to mention my neck has been sore for at least a good week now.  I am exhausted, and the weekend is on ts way and we are having  company.  I hope everyone understands.  But if they don't, you know where they can go!  LOL!

Learning Patience

I have never been a fan of patience.  At least I don't think so.  But if you were to ask others they would say you have so much patience.  I don't really.  I hide everything from everyone until I can't hold it in anymore, and I either scream or cry .  Not only that, but I like things done my way.  If you do it wrong, I will go behind you and correct it.  I never realized I did this until my daughter pointed it out to me one day.

The biggest challenge i have with patience these days is learning that I can't do things the way i used to.  Simple things like trying to sweep the floors, drives me insane because I can't just do it and get it done.  I have to take breaks, which is crazy to me.  It hurts my arms and my legs go numb and burn in pain within a couple minutes.  Then my ribs will spasm from my back around and under my breasts.  Just from the sweeping motion.  So I have to be patient, and take several breaks, and it takes me forever to get anything done!  Then I am exhausted from sweeping of all things, and I am done for the day then.

It is crazy how much chronic pan has changed my life!  With everything I do, it takes so much longer to get anything accomplished.  Patience is something you must have or you can drive yourself crazy.  I do this to myself a lot.  But I am learning.  That is the best I can do.

Rainy Days

Rainy days always seem to be the worst for me.  The cold, damp air creeps into my bones, and hides in the crevices and it seems impossible to warm them up!  Although the aches and spasms start a couple days before the rain comes.  I always seem to know when the weather is changing, as the old farmers would say"I can feel it in my bones".

Oddly enough, the pain I speak about is so intense, I do not feel that others can truly comprehend how I feel.  To explain it is awkward, because no words can do justice for how I feel.  It's so much easier to smile and say I'm fine, then having to explain, after all, I don't look sick on most days.  I can't remember a day that I wasn't in pain in one way or another ever since I was a child.

As a child I hid everything.  No one could know anything.  I was always fine.  And as I got older I held on to that message that was created for me.  But hiding your pain, whether physical or emotional, your bound to snap sooner or later.  We are not meant as human beings to cage everything up inside of us.

When I snapped, my world was turned upside down, and I was the one who did it.  I was angry, very angry.  I hated the world and blamed everyone around me for all the pain I had experienced.  My new motto was never let anyone get too close, and hurt them before they hurt you.  How ugly is that?

I still hold things in, but now I cry.  I cry for comfort, I cry for understanding, and I cry for that child I used to be.  Wishing for a life I have never really known, and never will.  Grieving for a life I felt cheated from.  Already knowing what to expect from my life, a sentence of pain.

Is it possible to get past the grief and move on?  YES!  I live each day to fullest that I am able, and any accomplishment, no matter if it is just doing one load of laundry, is a victory!  Just because chronic pain is part of my life, I don't have to let it control me.  It may to a point, but I am here and I will be here tomorrow still accomplishing something!  Even if these victories are only seen by me, they are still victories, and I will take that.  Some days it is just mustering up enough energy to get out of bed and get dressed.  But that's ok.  Do I give in sometimes?  Yes, I think we all do, but i still do the best that I am able to for that day.  And if know one else can see that it is my best, to hell with them.  They are on my mean list for the day!

Meds are a natural part of my life now.  I used to hate taking any kind of pill and had a really bad gag reflex.  Now I'll take five at a time no problem.  It would be nice if just one would help, but of course i take a cocktail of them.  But it was worse when i took nothing so I take them faithfully now.  I did my own experimenting with them, and I take them right now.  I could not imagine not having insurance, I am already paying $300 out a month in meds.  My insurance isn't that great, but at least it's something.

So for now, I am exhausted.  went to bed late last night and was up early this morning.  I feel it is time to rest.  But I accomplished putting up my blog!  And that is good enough for me!

Continued

So Life is so confusing at times.  I walk around in what they call "Fibro Fog" all the time.  I can have a conversation with you and five minutes later have no idea I had the conversation let alone what was said!  This of course is on moderate to severe days.  Then your medicated on top of it, and it gets really bad.

When I think back to when I was a child and young preteen, I remember having such bad growing pains.  I would cry it hurt so bad.  I would sit and hold my legs tight to my chest.  Then my daughter went through the same thing, and now my oldest grandson is the same way.  It makes me think, could this be an indication of FM as a child?  I had problems sleeping since a child as well.  I see some of the same attributes in my daughter now.  Insomnia, depression, no energy, anxiety, IBS, being in a fog, unable to get up and fuction right away.  And the knots in her back are the same as the tender points for diagnosing FM.  It scares me to death to think I may have passed this trait on to my child, and possibly her children.  Guilt is the word that comes to mind.  Even though I know if they do get it, it's not my fault, but the guilt will definately be there.  Any parent would feel the same way i think.

But this is a good example of what I do with everything in my life!  I worry about the what if's, and it could happen things that do nothing but drain my energy.  Wasted energy as my counselor would tell me.  I know not to let things go to that point.  I need to stay in the moment that I am in.  This is not an easy thing for me to do.  But I work hard at it everyday, and trust me, it is work!



My daily life cycle!



Another day

Another day of being medicated!  I hate taking pain meds, I feel so loopy!  I was up and down all night, could't sleep.  I hate nights like that.  Got up fairly early and started cleaning my dining table off, which had became the catch all when we did our living room floor a couple months ago.  It's not like there was much to clear, but I didn't know where to put anything, so I just left it there.  My husband was not happy.  We never have a sit done dinner anyways because he works second shift, and drives 72 miles one way.  So I am always alone in the evening. 

Right now I am frustrated with my life.  As you can see from my earlier blogs, I have been through a lot.  I am having problems managing what I can do, compared to what I used to be able to do, and shouldn't do anymore.  Ughh...  I hate the fact that I can't do certain things without paying a major price for it!  I do things I am not suppose to do, just to prove to myself that I am able to be functional!   But I always pay for it for a few days!  It gets so fustrating, and sometimes my husband really doesn't get it.  So therefore an argument insues and it is just draining.  I just say ok, and give in because I don't have the energy to argue.  I feel at times it is pointless.

Life’s Journey (continued)

So basically I have gone through life with what I would say is “victim” stamped on my forehead.  Anything that could possibly happen, has happened to me.  Emotional, physical, and sexual abuse.  I was a sickly child, that grew up on a farm, so there was actually no time to be sick.

My first memories of child hold were not of birthday parties or family vacations, but of being molested.  Believe it or not I was only two,and the memory is like yesterday.  I was told that you can not remember things from that young of an age, but I can.  I remember everything, the pain, the smell, and threats.

Years of abuse took place for me, but I would hide in my mind and try to not be in the present until it was over.  I remember a second person who molested me when I was in Kindergarten.  He threatened my life and the life of my new born niece. I told him I wouldn’t tell because  “my grandfather does this too, and I would never tell.” 

Eventually at age 14, I snapped.  I found my best friend in bed with my boy friend at a party.  I lost it.  I literally had a nervous break down and ended up in the hospital.  Days later when they finally released me I had to go back to school and face them both.  that was something I did not want to do, but I did.

I remember everyone in school was saying I overdosed on cocaine or something like that.  I had never touched any drugs in my life! There was one person who stuck up for me, he had done this once before in fourth grade.  TS you will always have my heart for that.   I was embarrassed, and panic stricken.  I did not want to be there, so I ran.  I left school, and no one noticed. 

Unfortunately, I my grandfather was coming for a visit, and I knew what that meant.  I was different now though.  This time things did not go his way.  Sad to say, but I beat the crap out of him, and left the house. 

I ran away the next day with my friend.  We ended up at a friends house a few towns away.  Her mom was pretty suspicious so we ended up leaving and finding shelter behind a bakery that had some huge boxes we used to block the wind and rain.  The next morning we decided to call her dad and go home.

My parents were so angry, as well as they should have been.  they didn’t know what was going on with me.  My  mom put me in counseling, where I just sat there and didn’t talk.  I was afraid and ashamed.  I didn’t want anyone to know.  Eventually she just stopped bringing me.

I started hanging around some other people that previously I would not have.  I was back with my boy friend for our on again, off again relationship.  But now my grandfather was coming again, but this time I was not going to be there.  I left.  A friend and I headed to the Twin Cities and it all went down hill from there.

I don’t have much recelection of what all happened, but I remember waking up in a group home with black hair!  I am a very white girl with blonde hair.  It did not look good at all!  This is when the abuse came out about my grandfather, but not my brother in law.  I was still ashamed, and embarrassed. 

From there on out I was mean.  I used to be a shy, timid girl.  Now I was just Mean, angry at the world and everyone in it.  Now I was the one beating up the girl who used to beat me up everyday at school.  My attitude was I am going to hurt you before you hurt me.

Life's Journey

My life has been quite a journey.  I am only 41, and my body feels as though I am 141!  I have no energy.  I ache all over and I tend to keep it to myself.  My head hurts, my joints ache, my muscles spasm. 

 I have fibromyalgia, and it wants to take over.  Most days I ignore the ugly beast as much as I can until the exhaustion is more then I can take.  I collapse or retreat to my room.  I feel alone most of the time, not being able to explain exactly how I feel.  And I am tired of trying.