WORDS CANNOT EXPLAIN

As I sit and wonder how to explain what I am going through, no words can really explain.  I suffer is all I know.  Trying to reach out and make people understand what my life is like is almost impossible since I can't put down everything I go through.  I forget so many things.  I have such a hard time trying to recall issues that have come up, or conversations that I have had.  All i know is that these conditions I suffer from leave me in agony!

I don't necessarily hurt when someone just touches me, but I will bruise if it is too hard.  Swollen glands are particularly a severe issue for me, and it repeats all the time.  So to say that I feel like I have the flu all the time is an understatement.  It is something that I have paid much more attention to lately though.  When this happens to me i notice that the ringing in my ears becomes more acute, and auditory noises bother me even more.  I can't handle the noise from the blower in the furnace, or my husbands music.  More then one sound at a time will drive me crazy!  I become so crabby...

When they say that a person with FM can't handle normal pain thresholds, I don't think that is necessarily true for me.  It's environmental factors i think that play into my pain thresh holds.  All though, I do have severe pains and don't want anyone to touch me because of it, if there is something that environmentally bothering me, it makes my pain worse.

Stress is the thing that kills all of us!  people with out any conditions as well.  But when I am stressed out, I cannot handle any added environmental stimuli or I become consumed in pain, and therefore cannot function.  which is a lot of the time.  My life has so many stressful components to it, it is hard to escape it. I do a lot of self imagery to calm myself, but it just doesn't work 95% of the time.  I like to escape in a warm bath and envision I am some where warm and calm, like near the ocean.  I can hear the waves crashing on the shore!  But when my eyes open, it is always back to reality.

People don't understand that it is a struggle everyday just to get out of bed.  I put my fake face on and pretend all is good, even though my body may depict a different reality.  Hunched over, limping, moving slow, and coddling my weak side and ribs for the pain is great.  I try to make good of everyday.  it doesn't always work out though.

I am saddened by the fact for the last week I have had to turn to painmeds.  I don't like taking them, but I can't even move without them.  It frustrates me to no end.  I don't want to be that person who depends on them.  But lately I have to. 

It breaks my heart people thinking, or she is just addicted to them.  that is clearly not the case.  I hate them.  I have had two friends, with in two months of each other, die two years ago from taking the exact meds I am on for pain.  Granted their circumstances were different from mine, but the result was they dyed because of the meds, which is sad.  I will never be that person, and i know it in my heart. But it is just sad.

When dealing with someone who suffers from chronic pain, you need not be judgemental, and have empathy for the person.  We don't want sympathy, just empathy, with a bit of understanding that we did not ask for this, nor would we choose it to be in our daily life.  I don't know anyone who would wish this for anyone!  It is not a life you want to live, but we were given this life, somewhere, somehow.  Everyday we look for reasons as to why, and we try to change what we can to make our life a bit more tolerable.  Tolerable is the key, but we need the support of others for this to occur.  If we can't get people to understand, and we feel isolated, our symptoms become greater.  that is a fact!

If we can accept the hand we have been dealt, then others need to accept that we are ill, and we need the support to feel better.  A cure would be wonderful, but I don't see it in my lifetime.  it took forever for the government to accept it as a real condition that affects hundreds of thousands of people, of every nationality, of every wage earner.  It is not specific to gender, it doesn't care!  Support people, this is what we need....

As for me, I have a very few amount of friends who get it.  My family still needs work, they know I suffer from pain, but they don't get the whole picture as to what stress does to me.  Expectations need to be thrown out the window because maybe one day I can do the dishes, and the next I can't.  I am not lazy, I never was.  But yet the world treats me this way.  Which in turn upsets me, and then my pain increases.  I am not a hypochondriac!  My symptoms are real, and you can feel masses in my back, my jaw, my neck, my legs, my arms.  I  just wish that people could understand how hard life really is and what a struggle everyday is.  Simple task have become tasks I cannot complete.  This becomes so frustrating and upsetting. 

Not being able to remember things because the fog is so bad.  I actually backed into my husbands car the other day!  It was like slow motion in my brain, I knew I was close and I was watching in the mirror, but it didn't register until i hit the car!  So I decided it wasn't a good day to try and drive.  Stuck at home again!  I don't drive at night because the lights bother my eyes so much!  I actually was closing my eyes while driving when headlights would hit my eyes!  So no night driving unless it is an emergency and I stare off to the side of the road looking for the line at the edge of it so I don't close my eyes.  It works, but I am scared i might miss something coming up on the other side of me.  So it is scary for me.

I am becoming more intuitive to my symptoms though.  I am learning from them and making adjustments where I can.  And I am praying that my family will become more educated.  I am thinking of printing up my symptoms that I deal with and hanging it on the wall so that I don't need to answer silly questions that I feel they should already know since I have been sick for years with these conditions!

My dad, bless his heart, is going to be 84 this year, and my mother, bless her heart, 80.  I told them that I don't want to live that long!  I can't imagine 40 more years of this!  I think that upsets them, but I tell them that they have to look at it from my perspective.  I am living my life to my fullest ability, and it is not a great and awesome life.  I love my family deeply, and I will be greatly missed, but I really hope I don't live that long in suffering.  But you never know, they could find a cure!  One could pray anyways!


So for now, I am just looking for some more understanding for myself and my family.  Living with FM/CFS, and the other conditions i suffer from is just what it is.  Making adjustments, learning, informing others, that is what i feel i am to do.  Just remember my mantra, "I WILL SURVIVE"

And the weak shall be strong!

It has been weeks since I have been here to write,  not that I haven't thought about it.  I just have been stressed and sick.  I am still having problems with my arm tingling, and the cold weather has been making things miserable on my body.

My husband and I were talking yesterday about some of the symptoms I have been experiencing lately that are new to me.  I looked at me at one point and said, "your daughter is right, you are a hypochondriac"!  I looked at him as if you only knew how miserable I am everyday and you can make a statement like that?  I said to him, you live with me everyday, and you can see the symptoms I am experiencing, I am not a hypochondriac.  He said I know I was just kidding.  It hurt my feelings so much.  Then my thoughts went to my daughter and I just kept thinking, Why?  With all that I have been through, why would she say such a thing?

If my family can talk about me that way, why would I ever want to share this with anyone?  No one to talk to without being criticized in one way or another.  I can't even tell my doctor everything for fear of being looked at like I am completely crazy.  I haven't even tried.  I am frustrated with my family for not educating themselves and then having to deal with their remarks when I open up is ridiculous.

I know I would like to educate others about these diseases and the effects they have. Not just on your body but your life.  But the fear of the responses are so over whelming, especially when you can't even get your family to understand is still just too much!  Plus I am not sure which symptoms are from which diseases I have.

So let's see what I have, Thoracic outlet syndrome, Fibromyalgia, chronic fatigue Syndrome, Degenerative disk disease, IBS, Fused neck, Fused low back, neuropic pain, chronic pain syndrome, falling bladder, periarticular sclerosis in the inside of hip, arthritis, Hypothyroidism, an insufficient amount of vitamin D and allergies.  so which is causing what?  They are all bothersome and all affect one another!

So how do I explain, what I truly can't.  My eyes hurt from the light.  My ears ring all the time.  Pain through out my body.  feeling an over amount of gas and bloating, not to mention sometimes I feel like I am going to pee my bladder right out!  Oh and changing from warm to cold or cold to warm air makes me almost pee my pants!  That's a fun one.  Certain smells drive me crazy, and foods don't taste right at times.  I am over weight and can't exercise right, and did I mention I can't walk more than a block before my legs are completely burning on the inside and numb on the outside?  Even when the weather is going to change i know.  I start getting these electrical type pains in my arms and legs that shock me all the time, like holding an electric fence in my hands and waiting for each shock.  waiting to get shocked before the pain of the previous shock is over.  And people wonder why the depression is so bad!  How do people like me go on?

The strength has to come from within.  Within our souls.  Knowing that God never gives you more than you can handle is a statement I keep referenced in my mind all the time.  And that the weak will be strong in Gods presence.  I was given these challenges to over come as if I was chosen by God himself.  I realize I need to teach, but my struggle is hard.  Finding the inner motivation to actually get there is what I am trying to do.  Hopefully I can reach some people with this blog.  It is my start, not my end.  I will continue this journey with purpose and faith that I will get there when it is time for me to.  I will survive, for this is the path I must take for me!

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