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!