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"

And the weak shall be strong!

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

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

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

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

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

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

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