Musings on Fibro - Mindset, Bodyset ?

[Tipnatee N]

Dear Peaceandquiet

Your number 9 hit me very hard. I totally agree cause I've been very struggling trying to cope with. It has been a big scar that I need to remove.

I believe I'm done apologizing to someone who doesn't believe me, I'm done putting me down and carrying the weight loads of guilts that crushing me . It's a waste of emotion , emotion that hurts me very deeply and screwing with my head. I'm losing my sight on my right eye literally just from stress and depression alone this pass couple of days . It's torturing. I have very hard time getting angry cause anger means my whole body suffer. So the hell with it.

I don't really have much confidence, but I'm going to do my best. Too many suicidal thoughts lurking inside me it need to stop.

Thank you so much Peaceandquiet

 

[Lubkos way]

I have often wondered how to deal with all the dark thoughts that seem to rule over the minds' of many of us.I think most of us struggle to escape the pain that comes with having those who we care about the most,look down on us as if we are weak!I decided once and for all,that they will not be the ones who will define me,I will,and you should too!Just like pain can be an invisible cage,so can the opinions of others.Relationships(of all kinds),have been the first casualties in this fight to finding a way to live with fibro,that is,after our own self confidence and self worth.If I plucked a hair for every time that someone made me feel inadequate,or my body betrayed me,I would be bald.I am happy to say,I still have a full head of hair,and I no longer care what any of those who have given up on me think!It is the first order of business!You can't have or keep something,which is built on a faulty foundation.It will fall apart as soon as any pressure is put on it.The one thing that we have is hope,and strength of character.Don't let anyone take that away from you.Hang in there,some of us do care!

 

[diamond]

So well said Lubkos i so wish i could have adopted this outlook. I don't think aside from my BF one person out of my family hasn't put me down or basically told me in various ways I'm weak or demanded of me i pull myself together and step up and help them or be better...basically be the person i used to be and want to be but am not any longer.

I guess like you say accept they don't get it and protect myself instead of beating myself up too!

Im fine when it unimportant peoples opinions but i haven't yet learnt how to shield my heart from the most important peoples opinions and criticisms .

 

[Lubkos way]

It is a matter of self survival Period!I do not know about you,but I will not continue to be a giver,and that is who they want you to return to.When do they begin to really show they care?Hopefully not at your funeral,because that is too late,NO?If that is the person they only want,then you know what must be done.Apparently you care more than they do,NO?

 

[Tipnatee N]

I have often wondered how to deal with all the dark thoughts that seem to rule over the minds' of many of us.I think most of us struggle to escape the pain that comes with having those who we care about the most,look down on us as if we are weak!I decided once and for all,that they will not be the ones who will define me,I will,and you should too!Just like pain can be an invisible cage,so can the opinions of others.Relationships(of all kinds),have been the first casualties in this fight to finding a way to live with fibro,that is,after our own self confidence and self worth.If I plucked a hair for every time that someone made me feel inadequate,or my body betrayed me,I would be bald.I am happy to say,I still have a full head of hair,and I no longer care what any of those who have given up on me think!It is the first order of business!You can't have or keep something,which is built on a faulty foundation.It will fall apart as soon as any pressure is put on it.The one thing that we have is hope,and strength of character.Don't let anyone take that away from you.Hang in there,some of us do care!

Thank you so much Lubkos way! Your words really striking me to the core.

No wonder why I went bald at one point while I was being dianosing with fibro. It did grew back but with lots of white hair. So bad I even tried the grey dyed for the fashion sense. Didn't work though cause my head ended up looked like a rustic bird-nest. :shock:

I used to have a mind like steel, but now it's fragile like glass, I have to picking up the pieces that kept on breaking and it cut deep in to my soul each time I try to put them back together. I've left most of the people that I care behind or keep some distance length in my heart in order to protecting my self . Yet I felt the loneliness is like a giant whirlpool that kept swirling around me , and I'm trying to swim away while gasping for air. When I try to escape , I came out sounding like a jerk . Then I get super depress about me being a jerk. It's a circle that I'm struggling trying to break.

 

[Lubkos way]

You are not alone in your struggle,even though you may feel like it much of the time!There is something that we often forget,and that is that,we are a special group us fibro sufferers!One day we will be noticed,and we will be appreciated for all the good things that we stand for such as compassion, kindness, sensitivity,durability of spirit,the ability to fight over the long term,and not give up under isolated and tortuous conditions!Sometimes I think I should be with a lady that has fibro or has been through some other life changing experience,Why?Because the ones that I have had the pleasure to share thoughts with,seem to know what is important in this life.Peoples' priorities these days have become skewed.Being ill is not something one wants to go through,or watch a loved one go through.All I know is that,so many people who have everything going for them(by that I mean,they are rich because they are in good health),do not realize their good luck.I have gained that wisdom,and really do appreciate every good day that I have these days.It has been 20 years,so long that I truly forgot what being without pain felt like!It was the first time I actually cried because I had no pain for 5 days in a row,and I celebrated it alone!Oh well,we can't have everything I guess,but I do want and hope to be with someone who also feels and appreciates the things in life that really matter.I think people that have endured hardships that are out of the ordinary,and got through them with their sanity intact,have had their spirit reawakened and will make up for lost time.I hope we all can,you included!

 

[Tipnatee N]

Lubkos way

Thank you so much for your kind words. I will try to engraving that in to my heart, that way I'll have something to live for during my darkest day ( literally) .

Wow, a couple of both with fibro. I'm alway curious about that. Cause if that match up perfectly it could be the start of something big. Since through out history nothing were more fierce or scary than couple who have share the same convictions . Who knows. You might shake the world of fibro treatment someday. I would love to looking forward to that someday.

 

[Lubkos way]

Well,I must say that,one of my mistakes over the years has become clear to me.I should have joined a fibro group to exchange thoughts on our mutual struggle much sooner than 20 years after fibro invaded my living space,like an unwelcome backstabbing fake friend!Maybe it is the plan,although I wish someone would have showed me a clear sign 19 years sooner.I just began round two of my treatment,and I feel so calm and carefree lately that after I go off this site,I will go for a nap,what a positive change.Me having a nap is as rare as,the Donald saying,I am sorry,it just doesn't happen,no matter how exhausted I was!I am pleased if I can give any comfort and hope to you,or anyone else that is struggling to hold on to the few strands left of rope that keep us all from completely falling into the abyss....

 

[sunkacola]

I am a little disappointed in the fact that,there are so many people who read this forum,but do not contribute their own thoughts to the conversation.I wish they(you) would contribute what their(your)facts are!Some of us want to hear what the similarities and differences are between us,for one simple reason.I (and I am sure you all are too!)am searching to end this nightmare.Is everyone waiting for the medical community??You know who will find the treatment,and hopefully a cure?It will be one of us,one who has an inside view of the so called "invisible illness".I know,it feels good emotionally to share all our issues with someone who understands,but I do not need therapy,I need a treatment!Can anyone help tell me what they believe is the reason why we all have somewhat different symptoms from one person to the next?

Lubkos, I don't have answers to your questions....I guess none of us do. but I agree with you completely, I don't need therapy (although sometimes it feels good to vent, and it also feels good to offer support to another), I need treatment that will work.

But I am convinced, whether I am right or not remains to be seen, that there isn't ever going to be a cure for fibromyalgia because I don't think that it really exists as such. I think it is a cluster of symptoms that tend to occur together....or not....and the doctors don't know what to do with it so they lumped an umbrella term over it. I think it will turn out that really it is This and That and The Other, and Over Here, and sometimes a person had This and The Other, but not That or Over Here, and so on, and this is why no two fibro sufferers are the same and there's such a huge variation in severity.

They may never find a cause for it, but if they find treatment, that is good enough for me.

 

[sunkacola]

Peaceandquiet,
cheers for you for the things that you are doing! I hope very much that all of those things work for you.

One thing I am also very much considering is to change doctors. It is such a hassle that I keep putting it off, but I want to do it. The doctor is not so bad, but the environment that I have to be in, in order to see him is completely toxic to me.

First, the place is refrigerated down to a temperature that chills me into blue fingertips even if I wear a heavy sweatshirt.

Second, the chairs they have are so incredibly uncomfortable that once I have spent two hours......and it is always at least two hours.......sitting in them waiting, I am in terrible pain every time.

Third, every single time, and I mean EVERY. SINGLE. TIME. they screw something up in that office.

They phone the scrip into the wrong pharmacy even though I told them three times where to send it and wrote it down for them.

They write the prescription wrong...for the wrong amount or put the wrong date on it.
Sometimes the prescription has totally contradictory instructions on it, like: "Take one pill three times a day, maximum allowed two pills a day."
When they do that, if I don't catch it before I leave the office, the pharmacy will refuse to fill it.
If I do catch it before I leave it means I will sit there for at least another half an hour in pain and freezing before they get me a corrected one.

They forget I am there and put four people ahead of me so I sit there an extra 45 minutes to hour.

By the time I leave I am invariably stressed out completely, and in far more pain than I was in when I went in. Sometimes it takes me a full day to recover from that, and I dread going there.

 

[Lubkos way]

I must say that I disagree that there is no hope for at the very least,a treatment for our issues.In my mind,it is more likely to be something like an infection or toxin in our body,that has got our immune system or sympathetic nervous system short circuited.Find that and you solve the riddle!

 

[Lubkos way]

Sunkacola,Thanks,I got the message to break up my sentences,so they are less hard on the eyes.For some reason my messaging does not work??Anyone know why?

 

[sunkacola]

Lubkos, you messaging works, I got all 5 of your messages!

I never meant to have anyone think that I don't think there will be a treatment for fibro. I only meant that I think it will turn out to be several different things, and each will possibly have its own treatment.

Treatments given for fibro so often don't work. Because they are not addressing the real cause or issue, and are only treating symptomatically, which is what Western modern medicine does, and which we all know is a lousy way to approach health care.

Once they understand what the various components of fibro are, they will be more effective at finding out the root of them.

Fibro is systemic, and a systemic problem will never be helped by symptomatic treatment (!!).
So all the drugs they give us only mask the pain, to whatever degree, or they help us to control stress if they are an anti-depressant, or they curb inflammation f they are anti-inflammatories, but they do not address the problem.

It's like giving pain killers to someone with a broken ankle. Sure, the pain may be less, but that person will have life long problems if you don't set the ankle.

That is why I think it is a mistake to try to find out what causes "fibromyalgia". I don't think it is one thing, but several.
I could be totally wrong, of course.
----I am not a doctor or a researcher, just someone who has chronic pain and fatigue, and depression, and who has read a lot about fibro.

 

[Lubkos way]

I must begin with four sorrys for you Sunkacola,for sending four sorrys extra to you(sounds like a relationship eh?haha!),for messing with your eyes caused by my poor writing structure!My computer skills are limited,I never got my messages confirmed or that the messages were even sent so,I appreciate your patience.I am in total agreement with you,completely,that the problem is systemic,which then begs the question,which system is the one that causes the myriad of symptoms that we all suffer from?
From the position of someone who has the illness for twenty years,everything that I have lived through and read over that period,leads me to believe that it is an illness of the immune system which affects the sympathetic nervous system concurrently.Basically,our immune system and our sympathetic nervous system control all our bodily functions and one,or both have been damaged by an infection or toxin,and the signs are similar to splashing water over an electronics board that controls all the complex functions of running a complete eco system,computer or our body(chaos ensues),which runs on electrical and chemical signals!
What are some of the most common symptoms that occur when you become sick with any serious illness that the geniuses DO recognize,and have the tools to measure,and follow any changes up or down?
You become extremely exhausted,you can not think straight and you ache like you got hit by a bus,so you end up in a bed,in a hospital,possibly with a serious condition.the worst part is that it does not show its face on any tests!(sound familiar?) You are unable to figure out what are the reasons for this surreal experience.It all feels like there is a real reason for concern.It is almost like being attacked,but no one shows up on any test or radar!
I really enjoy being engaged on this subject,and debating any other theories,so please,I welcome any theories that agree with me haha!But seriously,I want ANY thoughts,whether you agree or especially,if you do not.Thanks!

 

[Lubkos way]

Looking at my writing structure,it sucks,so give me a little more time to space it out.I am working on it,I get carried away in my thoughts!Sorry!