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!