Meds

My mood is better today!  It's probably because I took pain meds and put on a lidoderm patch too.  Take the pain away and it's amazing how your mood can change.  The irritability just lifts away and I feel so much better.  You would think I would just take the meds more often, but I just have this thing about having to take pain medication.  I know I can get relief if I take it before it gets too bad, but I just don't like to take it.  I know too many people who have died from taking pain medication, and the thought of it killing off my organs every time I use it really bothers me.  I use my lidoderm patches all the time though.  I don't think I could make it with out them!  But they are not enough alone, and I am just not comfortable taking vicoden all the time.

It's not just the fact of taking he meds, its the effects of the meds.  Walking around like you are high, isn't fun to me.  I don't like that feeling at all.  Especially if there are people around me.  Then I get paranoid that everyone knows I am "doped" up!  Not fun...

I read that the FDA suggested that Vicoden and Percocet should be removed from the market because of the acetaminophen levels in it.  This kind of bother me due to the fact that when I need it, I really need it!  I can't imagine not having it to take when I am in desperate need of some relief.  That would just be awful for chronic pain patients that don't abuse their meds!  I realize there are a lot of people out there that abuse these drugs, but those o us that don't, are going to suffer dearly if they pull them from the market like they did Darvon and Darvocet, which I used to take.

Well I guess they will do what they want, they always do.  It doesn't matter if it hurts some people.  that is just how I feel.  But for now, I can enjoy the rest of my day.

I Will Survive!: STUFF

I Will Survive!: STUFF: Family can be the most frustrating at times! Just when you think they get it, they throw you a curve ball and you realize how much they re...

STUFF

Family can be the most frustrating at times!  Just when you think they get it, they throw you a curve ball and you realize how much they really haven't listened to a word you have said!  Sometimes I just wish things could be different and I could turn that "Aha" light on!

As I struggle to maintain some type of normalcy in my life, I am clinging to the thought of, "things will settle down soon!"  It never seems to come though.  I keep thinking it's right around the corner.  But I am so exhausted, I am falling further, and further behind.  My house is a mess.  Cluttered is the word.  The floors are clean, but the table is full of "stuff", the counters are full of "stuff", my dresser is full of "stuff", and I look at it and become so overwhelmed that I can't seem to get anything done.  I try and start, and it seems to move from one area to another because I don't know where or what to do with it.

Now that my grandson is here, there is more stuff to deal with on a daily basis, and I am just tired.  We have a schedule now which helps, but it doesn't leave time for the rest of the "stuff" cause I am just to exhausted to deal with it.  Plus I am feeling the pressure of needing to do more by my husband to relieve his stress, which is creating even more stress for me, which is overwhelming me more!  I can't say anything, cause I am afraid he will be upset, and then that will just cause more stress too!

I am feeling trapped right now, and overwhelmed with my "stuff".  I have just taken and thrown stuff without even looking to see what it is when I was angry!  I have had a few outbursts like that...which I don't like myself when I do.  But I am at that point of exploding or imploding.  Neither one is good or healthy.

I wish I could get someone to just come and help me.  But I have no idea who could.  Everyone is busy with their own lives and have their own worries and burdens and I am not one to impose.  So I am stuck. 

Well maybe today I can tackle some of this "STUFF"! I am tired of looking at it.  I am exhausted just thinking about it.  But I am going to try to get the table done.  It needs to get done!  It has to!

I Will Survive!: Heartache

I Will Survive!: Heartache: I don't understand why my life has to be this way? The stress is relentless and I keep trying to put a stop to it, but it increases two-fo...

Heartache

I don't understand why my life has to be this way?  The stress is relentless and I keep trying to put a stop to it, but it increases two-fold every time I do!  I can't stand where my relationships with the closest two people in my life are right now, and I don't know how it will ever get better.  It causes me a great distress and it doesn't matter what I say to either, they are both so bull-headed, they won't budge.  They both feel the exact same way!  To me, it's easy, but to them, oh no, it's huge!

I want to hide!  Crawl into a hole and just sleep and hide!  I can't though, I have a beautiful grandson to look after and care for.  He keeps me going..if it wasn't for him, I don't know if I would of made it through the last few months!

My heart aches everyday, as tears roll down my face when there is silence and no-one around.  I can not share my pain, when I do I am wrong.  Whether it is my emotional or physical pain.  Emotionally i am just wrong no matter what, and physically there is nothing that can be done so quit saying it and making someone else feel bad.  I can't do anything right at this point and I feel like I am dying inside. 

This is where my pain goes, and stays.  Right here on this blog, and it stays here.  It is my outlet, my only one for now, but not for long.  I can not take not being able to speak how I feel cause I am always wrong, which is how everyone else is feeling too.  We are so broken.....And I don't know if anyone realizes it but me in this relationship.  I am scared, lonely, frustrated, and very sad.  I just want things fixed, if they can be....

XOXOXOXO

Another day passing me bye; 

Another day that I cry. 

The pain inside is so great;

I feel that I may never escape.

I know I wasn't there for you;

And now there is nothing that I can do.

I never knew I was hurting you;

I didn't even have a clue.

I wish I could do it over again;

Then maybe your heart would mend.

 xoxoxoxo

Surviving

It has been so long since I was able to sit and write/type.  I am just surviving. I have been stressed with family matters, and my anxiety is through the roof.  My depression had been kicking my ass until I was finally able to get some meds about a month ago.  I drag myself out of bed every morning and think to myself,... "lord it's another day!"  I am never sure how I feel about it due to the anxiety I know it will bring.  I fight to wake myself up enough to make a pot of coffee that I will drink until it is gone.  I try to remember to take my meds, then struggle to remember if I took them all later on.

My husband gets up and I get a tight feeling in the pit of my stomach.  What is not good enough today?  Who is he mad at today?  I know he needs to just vent, but it increases my agitation and anxiety to the point of me just wanting to shut down.  I don't know what to do with my feelings and I just hold them in, it's all I can do.

The burning in my shoulder and neck is horrific.  I went to the chiropractor and I said my pain was at a ten!  I meant a ten!  He told me that if it was truely a ten I would jump off a bridge.  I was in total shock!  I suffer from pain every fricken day of my life, I know pain!  If I had a bridge to jump off of at the time I probably would of jumped off the damn thing!  How dare he think that I don't know my pain scale.  I know my pain scale.  I was taking two vicodins every four hours and it wasn't doing a damn thing for my pain!  I plan on going back and saying something, but I needed time to cool off.  I am still very angry.  But at least my depression is a little better so I can actually hold a conversation without crying my eyes out!

As I am sitting here I find my pain creeping up on my pain scale again, of course I have no meds though.  I don't often take them, but the worse my depression is, the worse the pain is! 

 I am stressed.  I am overwhelmed. I am exhausted. I hurt all over with no relief.  I want out of my skin.  Until another day...............
I WILL SURVIVE!

 

As I continue on my journey in life with Fibro, I find myself stigmatizing myself as to what I am able to do at times.  So I try to look at life as if I am not some one that is sick, and i go about my business as if nothing is wrong, until I am tired.  then I must rest.

The stress hasn't gone away. So I must find ways around the stress to prevent myself from going crazy! I have been busy looking into local groups, which there are non without a lengthy drive.  But I keep pushing on.  I even attended a local meeting at the courthouse, but of course no-one showed up except me.

I don't feel as if my county is that freindly unless your are affiliated to one of the larger churches in the area which I am not.  I like my nice quaint group that I am with.  They are the friendliest people here.

As for now, this is short and sweet!  I am so exhausted that I can't think.  But I promise this, I will be trying some type of group this week!  Don't know which one, but one of them, and I will update how it goes. 

Life with Fibro

As I am realizing how long it has been since I have been able to actually sit and write, I realize how much life with fibro has gotten in the way.  For the last month I have not been myself at all.  Not even recognizing myself on most days.  I have been living in this fog infested, out of mind and at times body and soul existence.  Unable to pull myself together enough to make words come from my mouth the way I would wish them to come.

The stress in my life has been unbearable.  Between the mental health issues with my daughter and husband not understanding. The loser boyfriend of hers that would not leave. The police having to be called multiple times only to tell me there is nothing they can do. The family that claims they are supportive, yet clearly are not. The exes that are psycho as well.  And there I am having to deal with the fallout by being supportive. Then you add the issue of dependance and everything is about as stressful as it can be.

I don't think i am enabling, but maybe at some levels i am.  Yet on other levels I am not. My sanity is hitting a brick wall and i am crashing hard!  My fibro has taken over and i can't function anymore. I can't think, talk, or make a decision to save my own life.  I have been home now for almost three weeks, and I am finally able to start to think again. Stress impacts everyone, but for someone with fibromyalgia, it causes you to flare.  it's not just pain.  My motor functioning decreases along with cognitive functioning.  Migraines hit, and don't want to leave.  My senses are on extreme alert.  My eyes become very sensitive to light.  they are anyways, but they become extremely sensitive to the point I cannot handle any light in the house.  Smells become very noticeable.  any smell i don't like, tends to be the only thing i can smell. Noise is the hardest for me.  I can't handle people even talking, so I will isolate as much as possible.  the blower for the furnace or air is an extreme irritant for me, and make me want to pull my hair out.  even the dogs walking across the floor hurts my ears.  the ringing in my ears is so loud I just hate it.  And last, I can't handle anything touching my skin.  i feel like things are crawling on my skin and I will scratch until i bleed even though it hurts to scratch.  My soft sheets is about the one thing I can handle.  Hence, i am severely crabby, short, irritable, and known to lash out for no reason as far as others think.

But when I have to hold it all together under these circumstances, I find that I go into this out of body experience of sorts until i am able to be home and hide from the world.  I still don't know how I do it.  I won't remember a lot of the time when it is an extended amount of time, weeks I am talking about.  But this has always been my mechanism for protecting myself from bad situations in my life that I don't know how to deal with.  Ever since i was a child.  But now, it hits me hard when i feel safe again.  Everything I felt multiplied by ten, and then i am layed up for how ever long.

I am feeling so trapped in this life with fibro.  Trapped in this life with stress.  trapped in this life of emotions that I am unable to express for no one wants to listen.  This is my outlet!  This is my life!  This is one more day that I will Survive!


 

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....

Change

As I sit here void of all energy, I am trying to find a message I would like to share.  I am here, but lack a sense of actually being here.  I forced my self out of bed this morning as my body was stiff, sore, and cracking.  I have a headache that forces me to realize that today is "real".

I am on my way to taking care of myself!  I feel I will be able to start taking action to do more then just blog and share my inner thoughts and feelings on my life.  It has been a long time coming, and I will be able to move forward soon.

The weather is changing once again, and I feel it in my hips and shoulders/neck.  It is nagging at me terribly, but I ignore it as to say, just go away!  I hate when the days start this way, but I do my best to just keep moving.  The pain circling from my shoulders down my scapula and around my ribs, takes my breath away.  It makes it hard to ignore.

My daughters support system has grown, and her spirit has risen.  The stress on me is being lifted as this happens.  It feels good to know that she will be OK, and I can rest.  My body is telling me to rest.  The stress flowing out of me, releasing the grip it has had on my muscles.  Everyone knows what stress can do to a body.  I refused to allow it to stop me for so long.  I believe in moving forward, never backwards.  Life deals you enough problems, why put yourself in a backwards position.

My daughter is what I used as a distraction, to keep going.  The Love I have for her keeps my mind strong and able to ignore my pain and push on.  When needed I take time for myself as to regroup to continue on my journey.  For she is the one I reach out to for understanding, venting, and love.  I cherish her more than life itself, and would lie down my life for hers.

Change is coming!  A good change.  Life is going to be better, and now I must grow my support group to continue on.  I am excited to move forward to see where I end up.  I feel happiness coming over me.  It has been a long time since I could say I was happy.  It sounds so wonderful.

I hope to continue this blog, but being able to educate more then having to vent my frustrations.  Although venting is good, I look forward to adding more information!

So today is a good day emotionally.  I don't know that I have ever said that in my blog!

Continuing to struggle!

Mental clarity escapes me.  I feel like I am on the outside looking in.  I can't seem to focus, and I can't reach my own self.  I am in such a fog, that I can't remember the simplest things.  Conversations are like they never happened.  I am not in control and am feeling desperate to find some thing to hold on to.

Back on my meds after a day and a half of missing them.  I forgot them at my daughters for just one night and had to wait until midnight the following night to get them back.  I became violently sick.  Not sure if it was from missing the meds, or flu.  I still feel sick, but got my meds to stay down.

I feel the stress in my life is taking over and I can't stop it from robbing me of good days.  I continue my best to fake my way through, as to not stress my family out more then they are now.  I realize that the stress is key to my flares, and the fog that I have been in.  But I am unable to relieve it at this time.  I do my deep breathing exercises, which help, but I seem to have to do it constantly to keep myself calm.  It is not reasonable to do this 14 hours a day.

I struggle as I try to stay positive for myself and others.  I pray that there will be relief soon!  I am unable to focus on things that I should be doing for myself, as I can't put two and two together to make four!

After seeing the doctor last week, I have yet another thing that is wrong with me.  So a referral to a neurologist is where I go next.  Possible botox injections in my throat/neck, and if it doesn't work, removal of certain muscles in my neck.  Scary, and I haven't even really thought about it until just now.  One more thing, and I can't even remember what it is called.

I had four injections that day into my shoulders!  Two on the top and two on the side of the spine in upper shoulder area.  It was very painful, but I took it like a trooper even though the pain traveled from the trigger points!  At least we new we got them in the correct area!  I hate cortisone shots, even with the lidocaine they hurt.  And the spasms get intense a few days to a week later as it is starting to work.  I had to set up a second appointment for six weeks out to go back and have four more shots!  Not looking forward to it that's for sure.

My husband still does not understand anything about my diseases, syndromes.  He is not willing to learn either.  It bothers me that he doesn't go ahead and learn about it instead of constantly saying, your always sick.  Yes, i am.  And stress is why I am constantly sick and hurting.  I have tried everything to get him to learn about it, but he rolls his eyes, and I instantly shut down as I feel it is pointless to even try.  He doesn't want to hear about it at all, and it cuts into my heart and I feel alone.

I give up at this point.  No sense in making myself feel worse by trying to share and being ignored or ridiculed about it.  I so desperately want him to understand or at least try to have a bit more compassion, and realize that the little things he does, like rolling his eyes, or sighing, or making comments about me always being sick, affect how I feel physically, and emotionally tear me apart.

He is a wonderful man, don't get me wrong, but he is actually incapable of understanding.  there is more to it then I care to share, but it is very hard for him to understand emotion.  I love him, and yet feel alone at times.  it just really saddens me.

My daughter is finally going to get the support she needs starting tomorrow.  This should help me by knowing she will have more support!  I am so happy for her.  Her life will change in so many ways, she just doesn't know it yet.  But I have faith in her and she will grow to love herself, and see herself as I see her!  I am so proud of her.  She is scared right now, and stressed, but I know she will feel better, and feel as proud of herself as I am of her!  I am excited to see the transformation that will come from having the proper support system in her life.

At last, I am hoping for less stress in mine.  I know it is right around the corner, I just need to survive it a little longer!

Mental Confusion

As I continue on, I struggle daily with the pain and confusion.  I can't remember daily conversations, nor a conversation I may have had a week ago.  It is very frustrating, and makes me upset and sometimes angry.  The mental confusion I have had is so bad, and the pain just makes it worse.

I struggle with my relationships.  Half the time I can't remember anything that was said and it becomes frustrating for everyone involved.  My illnesses affect everyone close to me.  Sometimes it puts a barrier between that I have to chip away at to make them realize that it's really not my fault that I forgot to make a phone call, or I was suppose to meet up with someone.  It saddens me and I find myself in a depression.

The fog i am in has lasted a long time without clarity.  I am in this world, yet I feel like I am on the outside looking in.  Trying to get past it seems impossible.  Yet I push on knowing that I can't just give in to it.

Today is the day i finally go see my doctor.  Thank god!  Yet I am scared at the same time.  No one seems to have the spasms that I get.  The ones in my neck that make me feel as if I am choking.  It scares me that something else is wrong with me.  I feel like a hypochondriac when i have to tell my doctor that something else is wrong.  I know he believes in me and trusts me as far as something is wrong, but I know the nurses don't understand, and I often get looks from them like, oh what is it now, as I walk through.  It is humiliating for me.

Sleep has not been on my side lately, and I am so tired. At times i wish i could lay down and just sleep the day away.  That would never happen for me.  Too much pain!

Well I suppose I need to cut this short and go see my mom as I promised.  Then to the doctor at one.  I hope the visit there doesn't bring any bad news.

LONELINESS

As I continue my journey of life with my illnesses zapping me of all my energy, I realize that the magnitude of loneliness I feel is overwhelming.  It is a loneliness that no one could possibly understand unless you are in my shoes.  I have family and friends, yet I feel isolated.  Afraid to tell people how I feel for they would not understand.  This is what my illnesses do to me.  The lack of ability to understand unless you are going through it as well is impossible to explain.  There is no way to explain the way it takes away your life, and isolates you to keeping your thoughts to yourself.  When you are ill and suffering the need to share is excruciating.  But because of lack of understanding, you are unable to share.

I've been splitting my time between my daughters home, and my own, yet still feel isolated. I try to explain, but the stress of it all is too much.  Why worry someone else when their stress is too much.  I do not want to be a burden, nor make others feel they need to worry about me.  I keep it to myself, it's best that way.

I have recently been battling yet another symptom, that has been increasing in duration and frequency.  I do not know what it is from, but it takes my breath away.  The strands of muscles that run from the back of your head down and across your throat keep spasming.  They are increasing in strength and duration, and I feel as if I am being choked yet I am still breathing.  They scare me horribly.  Painful yes, but I can handle the pain, it's the emotional panic it brings on that is hard to deal with.  What happens if it does choke me one of these times and I am not able to breathe?  It is happening so frequently that while sitting on the couch at my daughters this week, I actually screamed out, scaring her as well as myself.  I have never done that with anyone else around!  She was like "YOU REALLY NEED TO GET THAT CHECKED OUT!"  Yes, I know.  But I fear having it checked out as well.  What if something else is wrong with me?  Something else to add to the list of diseases, or just another symptom of one?  I don't know, and at this point, I feel like I don't want to know.  I do have an appointment coming up, and I will mention it, but I am still scared about it.

I have been so stressed with life and family issues, that I have little time to think about myself.  I know I should be putting my health in front of everything else, but it's not that simple.  I try, but it just doesn't work out that way.

If I were to live my life putting myself first, I would be lonelier than I am now.  And honestly, that is not where I want to be.  My symptoms isolate me in my mind and body.  Trying to manage my life around this is what I do.  So when people say I need to take care of myself, I am, in a way.  I focus on doing what I can, even if I shouldn't, because I need some resemblance of control over what I am doing.  Even if it means I will flare as a result.  It is my way of feeling needed, and if that goes away, the depression and isolation would be so overwhelming, that I would not be able to bare it!

It's a matter of "give and take".  I give by continuing to do things I maybe shouldn't, and I take on the consequences of doing those things I shouldn't, hence the pain and emotional break down that goes along with it.  It is a never ending circle, and I am creating it.  But until i feel that others are OK, I will continue my battle.

Last night on my way home from my daughters, my husband and I stopped to get gas.  While he was outside of the car, I was sitting in the car with my head resting on the back of the seat when this couple (young) came out of the station and the girl kept looking at me.  I was only half oriented to it when she looks at me and says, "what the F#$% are you looking at you F##$ing B#$%$!"  I wanted to jump out of the car and kick her butt!  What is wrong with the younger generation these days?  If you knew how ill I was, would you still say that to me?  I was shocked and pissed all at the same time.  It reminds me of how cruel people really are, it makes me feel ashamed of our community.  Point being, People don't understand, nor do they want to.  That is how I feel, and that is what makes me feel so alone in this journey. 

Do people in the medical field understand how isolating these conditions are?  Or are they just concerned with treating the pain?  The pain is not what kills us, it's the isolation, and feelings of resentment, and lose of a life we once had that is causing us to give up and give in.  To the point of do what ever you want to me, I don't care anymore!  I am not an emotionally strong person anymore.  At least I don't feel like it.  It's because of all the crap in my head that I don't share, nor do I want to share.

For me, giving in is not an option!  although I walk that thin line at times, I continue to go on.  I feel if I give in, then others may give in, and I don't want that to happen.  I must go on no matter what happens for I am a survivor, and I will get through whatever comes my way!

Fibro-flare!

I am so depressed.  The ugly head of fibro has been rearing it's head, and I can't think, focus, or do anything.  I am in so much pain, and under so much stress, and then I am sick on top of it!  I need an escape, I can't handle it right now. 

My eyes are unable to clearly focus, as my right arm won't do what i want it to do.  The pain in my neck and shoulder are too much to bear.  It has zapped me of all energy leaving me open to all kinds of invaders to attack my mind, body and soul.  I struggle as I am typing, as to find the keys and words.  I feel like giving up, but I know I must go on.

The stress I have been under, and feelings of grief and loss recently in my life that I have not dealt with.  It was hanging as a cloud over my head which has now released the stormy rain.  Every drop pelting me as to say deal with it!  I can't.  It hurts too much.  My emotional state is unstable.  I feel as though I may lash out, or start crying and never stop!  I need to be strong for a little while longer, but the pain has reached the scale of no return.  I am not just talking about the physical pain.  I will deal with that, but the emotional pain I am in right now is excruciating.

I am once again dealing with the death of someone I loved very much.  I am struggling to make sense of it all.  I am thankful for being able to talk with her before the unexpected happened.  Yet I have this sense of guilt that I should of been there more.  I miss her laugh and her smile!  I sit alone and I can hear her laugh, it makes me smile.  I know her struggles are over now and she is with her mother and I am sure she is happy, finally.  We were rebuilding a lost relationship that we had once upon a time.  I was sure she was going to be ok.  I guess you could say she is ok now.  But I worry for her 9 year old daughter she left behind, her sister that has an enormous sense of guilt, and the rest of her family that she was out of contact with.  I hope that they will be ok.

I recently have been in contact with friends of hers and my past.  I am thankful to be able to share stories of brighter days past.  It helps in someways, and will reunite what was once lost.
My daughter is dealing, or not dealing with the death as well.  I am stressed about her health.  I worry as the days go by, and she seems frail.  Fighting her own demons, I try to stay strong to be there for her as any parent would.  I'm scared.... I don't know if I can do it anymore.  I am so completely exhausted.

My stress is not easily able to dismiss.  I can't just let it role off my shoulders and move on, yet I feel trapped in it's horrible dismay.  It is pushing me around, poking at me, taunting me. It won't let go, and I feel as if I am going to succumb to it.  I have no strength to climb out, yet I must go on.

As I struggle with my commitment to not taking on the stress of others, I do honestly feel that this is my stress, and that I may need to understand that this is normal stress for me as an individual, and a parent, with extenuating circumstances.  I feel my life can never be stress free, and this is something that I just need to better manage, But I don't know how.  Every time a cycle comes, I get unbearably sick and the fibro takes over my life at the worst possible times imaginable.  But as everyone knows who struggles with it, it will always bear it's ugly head under stress.  So where does this leave me?

I am frustrated as I want to do a support group, which would not only help others, but myself as well.  Life keeps getting in the way.  How do I make it happen when I am in such a state?  Everything in my life is so unpredictable, that I am scared to make a commitment to others because what if my issues get in the way?  If I could get my daughters fathers side of the family to pick up some of the slack in trying to help my daughter, I could manage to have a life of my own and still support her emotionally.  I can't do it alone anymore.

I am sad, and scared, and just down right exhausted.  I am feeling so overwhelmed, and with my fibro flaring, I am no good to anyone including myself.  But I must go on.  I must survive for I can't let the beast take my life!

Struggling!

I am certainly struggling at this time.  All my plans for myself have been put on hold, and my time and energy have been put into my daughter and her kids.  I am exhausted and feel as though I am not helping enough.  She tells me that just being there is enough, and makes her feel better.  This is good then for her, but I am still struggling with my own issues.

I did not call soon enough to have my prescriptions ready for me when I left to go to my daughters house.  Not good for someone who struggles with daily life to begin with.  I went for 3 and a half days without my lyrica.  That was ten doses I missed.  I could tell the first dose i missed that I had not taken it.  It is strange how I can instantly know, but you see, my body reacts negatively the moment it does not have the medication it needs.

Strands of muscles start to twitch and tighten.  The strands that runs across my throat on either side of my neck tighten, and then spasm.  It feels as if I am being choked, and it is more scary then anything.  The feeling as if my oxygen is going to be cut off puts me into a panic!  I start rubbing them trying to stretch the muscles back to how they should be.  It's terrifying, and I cry every time.  I hide myself so that know one can see.  The panic always sets in and makes it worse.  I manage to get through it, then my muscles are sore and very easily agitated if touched.

The pain from my groin in the right side shoots electrical shocks down my thigh and into my calves.  Both sides do it, but the right is much more painful!  Constant, and steady with my heartbeat.  All I can do is stand and sit, maybe try to walk.  But at times it is impossible!  I jerk and quietly in my mind cry out in pain!  I may make a grunting noise and hold my thigh above my knees and squeeze as hard as I can just to get through it!  Trying to alter the pain at least in my mind.

My arms.  What can i say, they are a nuisance to me.  Same thing i grab above the elbows and squeeze as hard as I can, all along thinking I just want to cut them off!  All my limbs, just cut them off!  I may get some relief then.  But definitely not total relief!

My back!  Well what can I say, it never, ever, stops hurting.  It is pain I live with everyday, whether its my shoulders, which is almost always a problem, or my lower back, which is also a daily thing.  It's a matter of how much pain can I handle today.  Not, does it hurt today!  It is 24/7, 365 days a year, ALL the time!  I rate these on a scale of what am I able to do today with how my back feels...  My middle back is inflamed always and from my right shoulder following the scapula and into my ribs, running under my breast in front.  This is intense pain.  It takes my breath away!  Like my ribs are broke or something to that effect.  It is hard to take a breath.  The pain is so intense, I must take slow shallow breaths and focus to get through them.  This usually happens at least once a day.  But this is all when i am on medication!

Now imagine the frustration I have been in for this week without the proper meds?  Constant crying, confusion, no memory recall, and the pain??  Lets say i was a bitch this week.  But I held the bitchiness in and turned it on myself rather then lashing out like i wanted to do!  It is not anyones fault but my own that they meds weren't ready.  I should have paid more attention to the bottles, so that it wouldn't happen.  But my mind has been else where.

Worrying about everyone else has been taking over my life lately.  And the worry is for legitimate reasons!  I know better, and should take care of myself first.  But it is easier said then done.  This week has been hell on me, and yes I am struggling.  Struggling with everything.  Pain, sleeplessness, and fatigue, they have drastically taken over my life!

Did you know that with fibromyalgia, the brain lacks certain chemicals such as Serotonin, which is a neurotransmitter that helps regulate your mood?  And Tryptophan, which is an amino acid that helps regulate serotonin.  And another chemical they identified as substance P, a protein involved in transmitting pain signals from the nerves to the brain.  Seems to me that certainly the lack of all three are connected and that is what they should focus on while looking for a cure.

So basically, something is wrong with my brain and I lack certain chemicals that the brain produces.  Sounds crazy to me.  Then how it affects the nerves in the body, it is so complicated, no wonder it is hard to figure out what to do for us that suffer.  I just know that the Lyrica works for me.  It doesn't take it all away, but it keeps it manageable for me.  They say we feel pain differently, that our pain is more intense.  Maybe, but I can tolerate a lot of pain, and when I complain, it is super bad!

Someday I hope to not struggle so much and I am able to do what i want to do, start a support group!  I guess i will need o push it out another two months.... I want it running by May and have a home town awareness!  After all May is awareness month! 

I will continue my journey trying to reach my goal..!  I will Survive!  My family needs me, as I need them!

My daughter and grandsons!

I love them so much!

Disconnected!

It has been 19 days since I have been able to write.  It has been too long.  Stress has plagued my life in all areas.  I wish i was that person I was so many years ago... I struggle with the battles i have within myself over what i should do, or what can i do.  It frustrates me to know end.

I have not been here, for I have been at my daughters. I have been being the support that she needs right now.  This isn't easy, as I have to put myself on the back burner, but it is something I must do for the time being.  I don't have a problem mentally doing this, just physically doing it.  I guess mentally it has become very draining as well if I am honest with myself.  But how does a person say no when when your child needs your support.  The kind of support that just being there is what is needed.  There have been a few days I just had to hide, and she has respected that, so I think she is learning that yes, I can be there, but I may disappear for awhile.

I have also been having to help my parents out with a vehicle, so I just gave them my car.  I figured, well if this helps the situation, then it is worth it.  I worry about them, and of course I am the go to person in the family still, even though I think my oldest sister should be more involved.  Just because i live down the road doesn't mean i am available all the time.  Or that I should be responsible for everything that they need.  She only lives 40 miles away if that.  I guess that is what she said.  Boy she does not get it at all.  the burdens she puts on me are the ones that are so stressing, that I can barely handle it. 

I am feeling disconnected lately.  I don't know if it is a self-preservation mechanism, or if it is my meds.  With the million and one things going on in my family life it is hard to tell.  i have not used pain meds in two weeks.  I have just out-right refused because of having to be clear in the moment with everything going on.  Which has been good and bad.  Fake niceness on some days.

I really hate when people ask me how I'm doing, and I just say ok, then they say well you look good!  I don't look good, and I hate when people say that as if it is going to make me feel better.  Quit asking me how I feel every time you see me.  I feel like shit, quit asking, I always feel that way!  I have noticed this a lot lately, and it is really irritating and seriously, I'm in sweatpants, how do you think I feel?  Just say Hi..... I am ok with that.  You know you don't really want to know, and your just being polite.

I know this seems negative.  Maybe it is.  But right now i cannot handle anymore.  I am so disconnected, I just can't handle anything else.  I am feeling buried underneath a tree and the roots are holding me down, and pulling me in all these different directions of pain and suffering, as it keeps my brain from receiving oxygen and  I gasp for relief.

I will continue to survive.  My struggles are long and deep.  But I will go on.  I will Survive!

Reclaiming my Life

So I am working with my issues of stress.  I am doing ok.  I have not lost my mind although I could have overreacted a couple of times, but I didn't!  Cuddles for me!  I have chosen to breathe and let it in, sit on it for a minute before reacting.  And it worked.  I was able to remain calm, and let the rest just roll off my shoulders.  I am proud of myself!

So with the last couple days being much calmer for me, didn't give me any less pain.  I have felt like my bones are sitting on each other and scrapping every time I move.  So yes, even though I had to give in to the pain meds, I am still hoping to use them less.  My doctor says he is amazed at how little I actually use them considering everything going on with my body.  He also tells me I wait too long before taking them and I am not getting enough relief because of it.  Makes sense i guess.  I just hate the fact that I have to take them to begin with so I wait until the pain is unbearable.  I guess I wouldn't advise that to others and I should take his advise.

I used to get massages which really did help, but the gal I was seeing, is not doing them anymore.  And I really liked how she did them.  So I haven't gone to see anyone else.  I could probably give her a call and she would come to the house, but I can't really afford it right now.  Aghh so is life, it goes on.

I have been busying myself with looking at resources to start a chronic pain support group in my area.  I always think too big though and I need to back myself up.  I was thinking of doing it for anyone with chronic pain, but then started thinking, I don't know enough about other conditions yet so maybe I should just start with FM and CFS.  Baby steps is what I need to remember so I don't overwhelm myself.  Which is where I had been for months with this idea.  Once I start, then maybe introducing other illnesses as it goes and there is a need for it.  It has helped so much to talk to people on line, reading comments from others and just knowing I have support of my friends with FM and CFS.  I appreciate all of them!

I am also so glad I decided to start blogging.  I used to journal all the time and kind of just stopped.  I didn't realize how healthy for the soul it really is.  I hope that anyone else out there that reads this will consider starting a journal.  Just to get out whatever is inside helps so much!  It can relieve tension in your body.  At least it does for me.  Everyone needs to try and find that one outlet that helps them, and this one is mine!

I hope you continue to take this journey with me, and remember, "I Will Survive!"

I Will Survive!: Identifying Stress!

I Will Survive!: Identifying Stress!: "As I continue my journey of life trying to make sense of it, I find myself always coming back to the issue of stress. Stress that..."

Identifying Stress!

As I continue my journey of life trying to make sense of it, I find myself always coming back to the issue of stress.  Stress that I carry myself, stress I carry for others, and the stress put on me by others.

Lets look at the stress I carry myself.  I make a snap decision where I think I am helping someone, and then financially I am burdening myself.  This is not new to me.  I have done this all my life!  My mom was/is the same way.  We spend money to help others and leave ourselves broke and make due.  I ask myself now, why would I do this?  It is the thought of helping that is pleasing to me.  It always has been.  I've learned that I am not good with my finances at all.  So I made a decision to stop and put myself first.  This is not easy and I will be very challenged by this.  But it is a gaol I have made for myself.  So on this new journey, I will be letting you know how I am handling the stress of not putting myself last but first.

Secondly, I carry the stress of others.  I tend to take on any and all of my daughters and husbands stress, worrying incessantly about what they are doing to alleviate it, or if there is something that I can do to alleviate it.  Hence taking on the stress of others is not healthy.  This is my second goal for myself this coming month.  To stop taking on others stress.

Third, I accept the stress that others put on me by doing this, that, or the other thing for them!  The problem is, I am at home so people think since I am not working I am able to do their running for them, or finding out information for them, or making phone calls for them.  This is a huge problem because people don't understand that I am home for a reason.  I can't work for a reason.  I would not choose to be home, I would much rather be working!  This one is the hardest for me.  It makes me feel like I am wanted and needed so that is why I tend to take it on.  Even knowing that I will probably flare really bad because of it, I still do these things thinking I am doing good and I AM needed.

The fact that I need to feel needed in its self is a huge issue.  My family loves me and thinks that by asking I am going to feel better about myself.  Which is true, but it leads to frustration and pain that I really don't want in my life.  So this challenge to myself to stop doing so much for others will be extremely hard.  I have been working on this one already for two years, and haven't made much progress.  But I am determined to do better so that my quality of life will be better.  In turn, I hope my family will understand the pressure it puts on me, and the pressure I put on myself, which is the greater of the two!

For someone living with chronic pain in their life, it is hard to find that place of comfort with boundaries without feeling guilty.  It is a huge obstacle that we battle everyday.  Setting limits with family and friends is not easy.  You don't want to isolate yourself from them, because life is already isolite living with a pain condition.  One does not live in the so called "real world".  We live in an exsistence of pain.  It torments us everyday, and it does not go away.  Some days are better then others, but we are always in pain.

We are survivors!  We live in this world crippled by pain, and we still manage to go on.  Whether it is a day at a time, or like me most times, minute to minute, or hour to hour.  As I am finishing this up, my hands in needles.  I have taken seven breaks to relieve my hands, back, legs, butt, and feet.  I will go on, I will survive!

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"