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"

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!