What is happening?

I don't know what to do.  I am stuck, and I feel myself being sucked down by quicksand and I am unable to get free!  I just need to break free!  I am lacking all energy and enthusiasm to go forward.  So here I sit.  In the muck as everything continues to go on around me, yet I can not focus on where or what i should be doing for me.

I am trying so hard to move forward with my plan of starting my support group, only to have pushed my mind into despair over not getting any phone calls, or feeling like I can possibly move forward anymore.  i just want this one consistent in my life, this line of support for me as well as for others!

So I am back in the glass ball looking out as the world goes by in strange rays of life that I know I should be a part of.  I am not functioning again.  I have no energy left, and I don't want to get out of bed or tackle any day!  I need the sunshine!  I need warm weather!  I need LESS STRESS!

In a perfect world maybe.  But as we all know, the world is not perfect, nor are we.  So I am still here, but barely.  I am trying to make it out of bed and just do something, but it is so hard right now.  I focus on others as to hide my own illness and it takes its toll.  I'm exhausted and I don't know which way to go.

I need people to understand that I will not give up!  Not on myself, or my family!  I just want our lives to settle down.  i want my grandsons to feel like they have a stable home rather then having to go back and forth every week.  I don't understand how any judge could say that it would be a good parenting schedule for children under the age of three or any age.  It doesn't make sense to me.  With that I really believe it is who you know in a small town.

So I continue to go back and forth to the cities to watch the grand boys while my daughter works.  Just until she finds daycare that will accommodate her crazy schedule.  Uggg..my heart goes out to her, she tries so hard to make sure she is always doing the right thing.  I love how others just love to knock her down trying to make themselves feel better.  It sickens me to no end, literally!

And she has such a pure heart, that she is beaten up inside all the time, it crushes her, and then it crushes me to see her that way.  My stress levels go through the roof.  I just want certain people to leave her alone!  When there is no contact, she is fine, when there is, it is horrible!

Ok enough of that.  As you can see my heart is fragile, and I am praying hard for things to settle down and take on a more "natural" course.  Until it does, I am afraid that my stress will remain the same and I will be unable to live the life I so desperately need too.  One of more solace with peace and happiness.

FM and Cognitive Impairment/Depression

Continuing from my post last week, cognitive impairment comes in as number two on my list.  this symptom is as annoying as can be.  you have seen me before write about not being able to put the right words together.  Or find the right thing to say at the right time.  The feeling of becoming "dumb" compared to what I know my intelligence is.

The struggle with this symptom causes so many other symptoms, especially depression.  Knowing what you mean, and not being able to put the words together to explain yourself is excruciatingly frustrating.  Knowing you have that blank look on your face while someone is waiting for an answer or response.

I can not remember directions or instructions.  i will forget them once the thought of the conversation is over.  i have to write things down in order to remember anything.  then the challenge is to remember to bring with the directions, or list that I wrote down if i didn't immediately put it in my purse. 

I can not tell you how many times my husband has gotten upset with me for not making a phone call, or feeding the dog, or picking something up for him.  It doesn't just affect me, it affects my relationships with others.  Someone will call and I tell them that I have to call them back, and i completely forget that they even called!  I don't mean to forget, but I do.  it doesn't mean that I don't respect our relationship, or not care about you as a friend, I just simply don't remember.  People don't believe me when I tell them this.  And i am sure that a few of my relationships lost were due to this.

So the frustration living with the memory recall loss is right up at the top of my list.  i don't know about others, but but it ranks right after pain.  It is really bad when you live with someone who is as demanding as my husband, thus why I rank it at number two.  It is also a cause of my disability, and why i can no longer work.  Even repetitive instructions I will mess up!  It's horrible..

Which brings me to my third worse symptom, depression.  Pain itself causes me to be depressed.  because I am unable to actively participate in life because of pain, I get really depressed.  I try not to focus on what i used to be able to do, because there is nothing i can do about it and it is the past.  but it always seems to sneak up on me when others are doing things i used to really enjoy and I am unable to participate because of pain, or because I know it will cause me more pain.

I guess when I am in pain and the simplest things in life are causing me more pain is when i get the most depressed.  Like trying to pick a flower from a garden, or walk with my dogs, or the big one, playing on the floor with my grandsons or having them sit in my lap!  These simplest things that on bad days that I can not do with out causing even more pain, and knowing i can't do them!

Then the fact that people with FM don't look sick, so people really don't understand that you are extremely sick!  And the fact that this disease affects you mind, body, and soul, the depression at times is so overwhelming, that it would be easy to see why people would just give in to it, and just "be".  No longer even trying to exist in the world where there is no understanding or compassion from others.

For those people is why I continue to push on!  They are the reason why I will continue to "survive"!  trying to reach them, trying to help them while making others aware.  I want them to know they are not alone, nor do they need to be.  All of us struggling with this disease know the loneliness and isolation it brings, but we must go on.  We can not give in no matter what.

UPDATE: I saw the neurologist last Friday and he told me I had severe fibromyalgia and that it wasn't under very good control....Hmmm, i didn't realize u can actually control it!  I mean to a point you can do things to make it a less chance of flaring, but really?  He did how ever add a few different meds, one for high blood pressure and two for migraines.  One preventative, and one for when I feel it coming on.  So that i hope will work since I am really tired of having them!  An added plus is the meds make me tired at night, and I am able to fall asleep, so for two nights now i have not needed to take Ambien!  So hopefully I can stop that med, but the trade up is two meds...I will continue to let you know how it's working.

Fibromyalgia,CFS/ME Can a pill really help?

People think they know what these diseases, "syndromes" are all about by watching the TV commercials.  But do they really know?  You see I can give you an active account on what these diseases are, and how they can affect you in every aspect of your life, because I live with them!

Drug companies come out with these pills and they say, "oh, take this pill and you will feel better!"  Really?  Do they suffer from these diseases, as I call them?  I think not.  If they did, they would know that no pill is going to make you feel better.  Problem is, it's not just the pain that inflicts upon your life, it is every other symptom that goes with it!  Symptoms that make you feel a complete loss of control in your life when you put them all together.  I know because my life seems to be in turmoil all the time from not just the pain, but everything else that goes along with it!

First, yes the pain!  Oh the pain.. the relentlessness pain that prevents you from being able to function normally in your life.  The constant nagging pain, the aching pain,the stabbing pain, burning pain, the pins and needles, and the sneak up and hit you with a brick pain.  The pain that zaps you when it is at such an inconvenient time.  Of course any pain is inconvenient, but the zap you pain attacks you like a predator in the night.  Then you have the spasming pain!  These are the ones that are truly most bothersome for me.  The cramping and tightening of your muscles in places that you are unable to stretch out to relieve it!  I get them in my neck, face, and around my ribs.  These are the ones that oh so take my breath away literally!  It doesn't matter if I take their pill, the pains still come!  Not as bad as without the pill, but yet they still come and create havoc in my life.

So you see, a pill may have some affect for me, but it is truly not what they pretend it to be.  As you watch their commercials, it seems that all you have to do is take their pill and you will have your life back.  Not true.....at all.  Do they help me?  Yes, but it does not allow me to have my life back.  Nothing will.

You see, there is no cure.  They are not even sure what it is caused from.  It could possibly be from a virus that attacks your autoimmune system.  Another thing is, which came first, Chronic fatigue syndrome or fibromyalgia?  Still a question where the answer is unknown.  I remember back as I was a teenager and I think I had it then.  All the signs were there.  I definitely know I had it in my twenties although I was not diagnosed until my very early thirties.  But back then I didn't know anything about it.  If I had, I would of brought it up to my doctor then!  It seems to take quite awhile to get diagnosed.  You have to have had the pain symptoms for I believe three straight months before they would even consider a diagnosis.  Usually you went through a lot of docs saying there is nothing wrong, no tests reveal anything so most people where considered somatic, meaning, complains of, but are no real symptoms are present.  I know I saw that in my medical records.  Don't get me wrong, my doctor is great and does listen to me, he was just doing his job.  I did however get diagnosed with depression early on and years before I was diagnosed with Fibromyalgia.

Once I was put on an antidepressant, I did feel a bit better as far as not breaking down in tears for no reason what so ever.  I had a little more energy, but not a whole lot.  I would go to work and by the time one came around, I could barely keep my eyes open.  And it was always a challenge to drive home.  My eyes constantly closing, and scaring the crap out of me.  Most of the time I could not remember the drive home!  Then once I was home, I would hit the couch and sleep till it was time to get up and go to bed.  My poor daughter really had to fend for herself because I never had any energy to do anything!  I was so tired, and it was beyond just feeling tired, I literally drug myself throughout the day waiting to go home to go to sleep.  I slept all the time, but no matter how much I slept, I never, ever, felt I was rested. People thought I was lazy.  I should say my family thought I was lazy.  I didn't have the energy to do dishes, laundry, or pick up the house.  It was a very rough time on my relationship with my husband.  Especially since he was neat, orderly, and everything had a place, and had to be lined up perfectly! (Yes, he has his own issues!  LOL)  Oh that was trying times!  But we still managed to make it through.

As I continued with my "somatic complaints", my doctor thought that I was just too stressed out.  I had so much going on in my life.  I was dealing with a teenager who was into drugs and drinking and in trouble with the law, fighting with my family, dealing with my husbands demands he was putting on me, the "ex", my daughters father, and lord knows what else.  He did put me on sleeping aides on and off for a couple years before he decided I had Fibromyalgia.  With that diagnosis in hand I still had no idea what was wrong with me, and I could not explain it.  I was put on medication to help with the nerve pain I was having, and that seemed to help some.  I was relieved that I was not "crazy" as my husband thought I was!  But even though I knew what it was, I could still not explain it, and I just looked like I was lazy in his eyes.  It was hard to deal with.  But I did the best I could and pushed through the pain, confusion, exhaustion, and unwanted advise from others.

I still do that to this day.  Push through that is.  It is what I have to do in order to make it through a day.  While some days are better than others, I still push through. As I continue to explain what I go through, I hope that you will continue to read.  If I can manage to reach one person to help them understand, then I will have accomplished what I have originally set out to do. Please continue to read and leave me your thoughts.  And remember, I will survive!

To be continued....

The Pain is more then Physical

Living in chronic pain and despair, the pain I write about is open for the world to see.  As I tend to struggle with ups and downs, my progress fluctuates.  There always seems to be something tearing me apart, attacking my heart and soul.  It hits me harder then I think at times.

I try so hard to keep my mind positive and strong, even though at times I just can't.  The monsters inside me take control over my body, and I feel as though I have been invaded.  Once a hard working, self motivated person who felt that they had value in their life, now seeking out value from the ones I love, and feeling as if my life is passing me by.  I can compare it to the old black and white movie that you watch but you can't quite understand as the voices don't match when they are talking.

I fight to keep my mind strong everyday as I can not seem to comprehend as i used to.  I feel as if I am stupid, but I know I am not.  It takes me so much longer to process information these days.  And if I remember it five minutes later it's a miracle!  My family gets frustrated, and I frustrate myself.  Nobody can make me feel as bad about it as I do though.  I punish myself in my thoughts everyday.

My growing frustration only adds to my resentment of my illnesses.  I don't ask my self "why me" anymore, but I am still angry that it has taken over so much of my life.  I wish that people will hear me when I say, "I am still here, I am surviving!"  I may not be the person I was before, but I am still the same at heart.  I may go through my ups and downs, but I am still here!  I don't want to be looked at sympathetically, but some compassion would be nice.  I may look fine, but I am so broken inside!  And that I can not hide.

Living this way is so challenging.  Who would of known how deeply these diseases' would affect not just me but my family, friends and community I ONCE was a part of.  See, I am not apart of these anymore.  Physically I am, but I am lost inside dying to be understood, and grasping at straws it seems.  No matter how I explain what I go through, I don't feel they understand enough to honestly say that they get it.

I loved doing things with my family!  I still do, but it is so hard to say yes these days.  I don't know how I am going to feel an hour from now let alone a day, week, or month from now.  It is a horrible feeling to always have to say, we will see.  Friends don't call anymore, and being out and helping in the community is not an option.  I can't stand for any length of time, I can't lift over 10 pounds without throwing myself into severe spasms of pain.  Even sitting causes problems with numbness and burning pain.

It should be easy to see why I am left feeling so alone and isolated.  And I feel as if most people don't care.  I mean, who would want to call or ask me to do something when I can't commit.  I guess I probably wouldn't either.  After all, I don't look sick. 

One of my close friends who lives in the same town as me just basically dropped off the planet, and we never talk anymore.  I have tried, but I am done trying.  Now I just don't care anymore.

My life is no more as it once was.  That is a fact.  But I am pushing on.  I continue to struggle daily tyring to make sense of things that I should know.  To conquer one day at a time is a huge accomplishment for me.  I know it sounds crazy, but that is how it is. 

As I sit and write, I wonder if I am making a difference for anyone else.  It does help me just to release what is built up inside.  Then at other times I think, why would anyone care to read this?  It is just a person complaining most of the time, and frankly who wants to hear it.  I feel I am everything that nobody wants to be.  A shell of the person I once was.  My intelligence appears to escape me at times.  Unable to be a productive member of society, I feel guilt taking over my life and soul, and I am unable to rid the burden of grief.

It is hard to put myself out here baring my soul to all who dare to read.  My life is hard and grueling at times.  But I continue to survive even if it is one day at a time.  I hope if your reading, you will continue this journey with me.  It will make me feel less alone in this world.  That is all I ask, to feel less alone....

Hitting that brick wall!

I am struggling with my own demons and hitting a brick wall.  I am financially and emotionally drained! As I try to break free of the stress, it continues to grow out of control.  I feel like giving in to it all, and just giving up.  It seems no matter how hard i try, it isn't working.

I feel as though my life has spun out of control, and I am whirling in the wind.  I can't handle the pressure I am feeling from others, and of myself!  I want so much to take control, yet I fail to do so.

I am in this state of being, but not really here.  I can't think, concentrate nor put words together to say anything correctly.  I am lacking the energy to just be.  I am scared, and anxious, yet at the same time I feel nothing.  How can that be?  I am not sure, but that is what i am going through.

My neck and face quiver as the spasms are light but nonstop!  It hurts.  I'm in pain!  So much pain physically and emotionally, that I am left feeling broken and alone.  Reaching out is of no interest to me, I want to be alone.... Alone with my fears, judgements, and the depression it brings.  Right now, "IT" is winning!

Where I go from here, I don't know.  But I have to pick myself up sooner or later.  Sooner would be better then later yet later is when it will happen.  I lack all energy even to care about myself.  I don't right now.  I am in such a dark place where I know I need to battle back from.  But I don't care right now.

Anguish, anger, disappointment, ashamed, isolated, depressed!  These are some of the feelings I am having about myself as of late.  I don't feel I am strong enough to fight the fight today, so today I give in!  I can't fix anything, so I need to let go and give into my feelings and let the emotions come that I so desperately try to keep hidden from the world around me.  I can't hold it together anymore and I need to release all this hostility I am holding in.  Tonight I am going to a meeting.  I think it is time....