Tuesday, May 12, 2015

Launch of the new Beafibrofeenxrsing Truth Talks video series

So it's May 12th and it's that time of year when we gather our forces and shout loud and proud that we have Fibromyalgia... Of course it's all about awareness and it's important to have a day that we can dedicate to educating the public on our need for both support and a cure.

My question is, why is it only one day... Why is it that we choose to hide our illness the rest of the year - why do we put on fake smiles and pretend that we aren't hurting?  Don't you think it's time to demand our right to health and happiness?  I do... So today I am releasing the first of a new video series called Beafibrofeenrising Truth Talks... A Candid exploration of what life is like with Fibro - an honest sharing of my own personal experiences with the disease.  Along the way we will explore all the different elements that need to be addressed in the journey back to health.  I hope you'll join me on this adventure so that we can come together in solidarity of our right to live normal, pain free productive lives.

Sunday, May 10, 2015

A Mother's Day Tribute to a Fallen Fibro Warrior

For years I’ve hated Mother’s Day…

Even though I myself am a mother and recognize that it is a day to honor those who hold our future in their hearts and hands by caring for and loving our treasured young, I simply have not been able to find it in my heart to celebrate.  I’ve been too angry you see… Too angry at my mother for passing away when I was only in my late 20’s, too angry that she passed away from something that could have easily been avoided and much too angry that she passed away on the one day that a mother is NEVER supposed to leave a child; Mother’s Day.

I used to joke that it was her way of insuring that I never forgot the day, all my life I have been horrible with remembering dates; I can’t count how many times I forgot her birthday, mother’s day and my parents anniversary.  It seems callous and cruel that I would speak of her date of departure so casually but I needed some kind of emotional defense against the very real and only deniable to myself fact that I was well and truly pissed off that she would dare abandon me so soon.  Yet this year I decided to look at it in an entirely new light, this year as I move towards a lifetime of working with women who like my mother (and myself) are fighting the good fight against the disease called Fibromyalgia, I will use her passing in May as a shield and a sword that serves in the fight for health and wellness. 
So she passed away on Mother’s Day, that means she passed away in May only a few days before what is now an extremely significant date in my world; May 12th, International ME/CFS & FM Awareness Day, a day when Fibro Feenxs around the world spread their wings and rise from the illness ashes.  I wish she’d had the opportunity to do that, I wish that back in the day, when she was diagnosed that people understood what Fibromyalgia was but the truth is they didn’t and it was that fact more than anything that resulted in my mother’s untimely demise.  Of course she did not die from Fibro directly, nobody ever does… Yet it does kill… It kills some people through the effects it has on their emotional state, leading to deep depression and occasionally suicide.  Some people (like my mother) die a much slower and uncomfortable death as their bodies systematically shut down from abuse of prescription pain killers combined with alcohol and other medications that are utilized in the never ending quest to ease the pain.    

So, yes, for a long time I was angry at my mother, for a long time I thought her weak, I thought that she had given up, given in, and that her selfish actions were completely unforgiveable… Until, that is, I too was diagnosed with the same horrifying disease.  And now… I get it – oh boy, do I get it… Without help and support or understanding and compassion how can any one person be expected to deal with living with debilitating physical pain 24 hrs a day/365 days a yr.  She wasn’t weak at all, in fact in retrospect I have to admire the strength of will it took for her to not take her own life, knowing as she must have that for the rest of her life relentless pain would be her companion.  I remember her hours of research, I remember how she would spend a whole day in the library trying to find information on Fibromyalgia or anything disease that seemed closely related.  In later years she would do the same on computers… phone calls to doctors and to Fibro awareness groups.  She tried to share what she had learned, she even tried to warn me that it might be hereditary and that I needed to be careful and diligent with my health.  I didn’t listen… I was one of those people who didn’t believe… All I did was blame…  So the truth is, it’s not my mom who needs forgiving, it’s me… for not understanding… for not taking the time to find out what the disease was, what it would do to her, how it was making her feel…

Some could say that my own experiences with Fibro could be punishment for my cold and callous ways… some could say that, but I won’t.  I think that more than anything the entire experience has been a gift, a lifetime journey that instilled in me a deeper understanding of the mindset of people affected by Fibro.  It is a way for me to see it from all sides, to understand not just where the Fibro warriors are coming from but to also see through the hearts and minds of both the families and the doubters.  It has made me stronger and has prepared me to face this head on and be of service to those in need.

This year, I’ve stopped being angry; this year I have stopped blaming my mom for leaving, stopped blaming myself for not being compassionate enough and I’ve even stopped blaming the medical community for pill pushing.  I’ve stopped blaming because I’ve realized that all the energy I’ve put into being angry and pointing the finger at this, that or the other has robbed me of precious energy that could put to better use.   This year I will focus all of that energy into educating people about the causes and the solutions to this extremely manageable (and I’m convinced curable) disease.  This year I am going to spend my time supporting those who for the moment cannot support themselves, I will encourage and inspire them to action so that they find the strength of will to take their health and wellbeing into their own hands.  This year I will pour my heart into celebrating how far we have come with regards to understanding the causes of diseases of Fibro and acknowledge the undeniable fact that thousands of people out there care enough about the suffering of others to relentlessly pursue a cure.

This year I will honor my mother on mother’s day by making her my own personal saint… St. Marci, the patron saint of Fibro Feenxs eveywhere who watches over us and guides us on the path to happiness and health.  Thanks mom for showing me the way… I hope in the years to come, I make you proud.

Niki Norlock.

Tuesday, May 5, 2015

The Madness MAKING of CFS/ME

Guest Blog - written May 2, 2015 

Dr. Nancy Klimas, an expert in ME, CFS, and AIDS, was quoted as saying, "A CFS patient feels the same or worse than congestive heart failure; the same or worse than late stage AIDS. If I had to choose between the two illnesses, I would rather have H.I.V. "

Not to say that it's easy having AIDS either, but CFS/ME (and Fibromyalgia) does not get the credibility for the seriousness of how deeply those afflicted suffer invisibly, or the understanding of how insanely hard and challenging it is on a daily basis with very little relief that goes on year after year into decades. And for many of those years and decades, I only lived with "it" and didn't have a name for this invisible torment that no words can describe as I was left for dead by the medical community.

I kept quiet and tricked people for too long about this and now I am finally being honest; being honest to give voice and validation to so many of us as we have hidden in shame and confusion. But now it's time to get real. Talk about it. I downplayed it for decades and used every device available (healthy and not so healthy) to cope to appear "normal" and capable to get through social situations, relationships, careers. But the wheels always fall off in each endeavor because I didn't have a clue of what was happening to me. So, I tried to positively think myself better, along with years of much trial and error in everything holistic (as the medical community has no answers or help) and blamed my supposed personality or thinking defects. There is so much oppression around these chronic toxicity illnesses (like Fibro, MCS, Lyme, CFS)  that is trying to shame us into silence. No more. Time to bring awareness. Time to be courageously truthful.

Most people think that because you aren't killed quickly by "it" (your ongoing struggle that is invisible and has no name) nor appear to be ill, then you can't be that sick and are exaggerating or creating problems when there are none. But just the opposite is happening; you are hiding and diminishing the reality of the seriousness of this mystery illness. So, you aren't seen or validated (and then wrongly seen), then people demand of you things you are incapable of doing or being and add insult to injury by telling you (or silently judging you) that it's all in your head or it must be just your need for suffering and lack of gratitude for life. Just because they might see you on a good day, they assume that you are fine (that day when you could and chose/allowed to see people that you built up to for days and weeks and will pay for in the same). You use every coping mechanism to get through this social interaction available (and invisibly to those you are with, so they just see you as "fine"). All the attempts at hiding "it" and overcoming "it"  due to shame for this mystery while in a social interaction has worked. You've fooled them, but gotten yourself caught in a corner as well. A lonely double life. 

You want to be a part of the land of the living; you long for it and love being with people, not isolating yourself, but it devastates you energy wise. You're then accused of ignoring friends, not making efforts, preferring isolation over connection, preferring animals over people. None of these are true. You want to share with others what's happening to you, but don't want to focus on it when in a social setting, as it's relief from the isolation; what words can possibly describe this hell? Any attempt to describe it makes you sound like you are complaining or being negative or too focused on it (as if a vice on your head can be ignored even though you tried to deny it and avoid it for years). So, you live a double life that is isolating, lonely, suffocating, and tormenting; you're never truly seen for your genuine self in any way. When with people, you then make the choice to hide it and cope with all your might with whatever resources are available before collapsing behind closed doors again. It's living in a glass cage and window shopping at life despite the utter urge to live in the world and be alive in all ways in all emotions, not just pain.

Once you do reveal all this and are honest in attempts to be authentic, real, truthful for a deep connection, most people eventually leave and drop like flies from your life, as they can only take so much before moving on with their own lives (I'd high tail it away from this too if I could, but you can't). You become a never ending saga and people think you just need to snap out of it. Which leads you to isolating yourself again and hiding it again, but there's no escape for you. You have to be with it. It's something that has to be faced day in and day out relentlessly. The divorce rate for CFS sufferers is 75%+ and suicide is one of the top causes of death of CFS. That's why more people with this need to stop hiding and be honest to get the validation (and research/help) they deserve, as these toxicity chronic illnesses are highly complex.

Many bodily systems are seriously effected; immune, endocrine, nervous, cardio, mitochondria, methylation with a wide range of symptoms to sensory overwhelm hell (too loud, bright, tight/loose clothing - tactile, chemicals/smells sensitivities) to fatigue that feels like a hangover, poisoning, the flu (without the sneezing and fever), while heavy lead fills your cells all in one go each day, to varying degrees of body-wide chronic pain, to chronic headaches, dizziness, breathlessness just from talking, cells on the deepest levels feel they are suffocating, to being brain dead some days despite having an intelligent mind (major cognitive malfunction), to emotional upheaval and turmoil (as a secondary cause, not the main issue), and much more including digestive issues for many and eventually trauma and PTSD due to living like this for so long with no validation or support/help while being marginalized and not taken seriously. And no matter what you do to try and heal, nothing helps. It's all a cage. 

 With such little validation from the medical community (which fuels the lack of understanding of society), all of the superficial/wrong tests are given which reveals all is normal. So, they push psych meds on you and tell you it's all in your head instead of questioning further or doing any kind of functional medical testing, but insurance doesn't cover much of anything that is relevant or helpful along the lines of testing. It only covers the tests which don't tell you anything.  If it shows nothing, then you can't get help and insurance doesn't have to pay for anything; the illness is not validated, no research is funded. Any research into this has been thwarted and suppressed with very little funding given and scientists (who fund research out of their own pocket) who actually start to uncover answers, careers are ruined and info censored. CFS and the name (nor the new one of SEID) does not do any justice to describe the seriousness of what's happening in our bodies and was intentionally called this to downplay it and confuse it all. There is a massive cover-up for some reason.  I know vaccines are a big part in this cover-up. I haven't really told my own story here of cause, as it's long and in another note, but vaccines were directly involved as a big part of my health decline into CFS. I know there are many variables for each person, as it takes many variables to get so ill, making it very complex, but without those vaccines, I wouldn't have tumbled so far into illness.

 More awareness is needed! More awareness to bring compassion and understanding, as this is as serious as AIDS (and CFS has been called non-HIV AIDS - because it is an acquired immune deficiency syndrome), but also more awareness for research into these toxicity illnesses in terms of how to heal them (this includes Lyme, CFS/ME, MCS, and Fibromyalgia etc.) Too many are suffering so immensely, invisibly, alone, and lives have been more or less taken. This can't go on like this. The silence has to end.

written by: Susan Marshall
Edited for Feenxrising by Madison Leach

Monday, May 4, 2015

Guilt Kills - Self-love Heals

One of the most daunting challenges that those with ‘invisible’ chronic disease face, is that of emotional well-being.  It might be assumed that this is due to the stress of living with constant pain and fatigue, or even because of the lack of support and understanding; while these issues certainly factor in and do need to be addressed during treatment, there is one emotional stressor that is often overlooked.  For many who live with diseases like Fibromyalgia, there is a nasty emotion that gnaws away at the spirit and destroys an individual’s hope for a brighter pain-free tomorrow.  In time the harboring of this emotion can cause deep and unrelenting depression.    The truth is guilt kills…

I realize it’s odd to think that a person suffering from a physical illness would feel guilty about it but truth be told one of the most common things I hear from those suffering from Fibromyalgia is how guilty they feel…

How guilty they feel because they can’t do all the things they want to do for their family.

How guilty they feel because of all the times they’ve had to say to no to invitations from friends.

How guilty they feel that their spouses have to work twice as hard to provide for the family.

How guilty (and yes deeply ashamed) they feel that they never have anybody over because their house is a mess (too tired to clean but not too sick to care).

How guilty they feel that there are times when their husbands can’t touch them and they know that intimacy is important to the success of a marriage.

How guilty they feel that they can’t tell their family and friends how guilty they feel; they know that their family wants them to be honest but they would feel really guilty if they gave their family and friends more things to worry about so they keep their secrets and feel guilty about it.  Etc…

How guilty they feel…  The list is long of reasons that they feel this way and if they only knew the secret that their families are hiding they might be more willing to let go of some of that guilt.  I had a fascinating talk the other day with a young woman whose mother has been suffering from Fibro for years.  Here is the daughters guilt list…

She feels guilty because she can’t take the pain away and make her mother better

She feels guilty because when she was younger she didn’t’ understand why her mother was so edgy and why sometimes her mother couldn’t do things so she resented her mother for being sick.

She feels guilty because she has a full time job and she knows that her mother could use more help around the house but she doesn’t have time to do everything she wants to do for her mother.

She feels guilty because ultimately she knows there are a whole bunch of things that her mother feels guilty for that make no sense and she can do absolutely nothing to ease her mother’s guilt.

She feels guilty because she never really tells her mother this; she thinks that if she did it would add more stress to an already stressful existence, so she keeps the secret and feels guilty about keeping the secret.  Etc…

Of course women aren’t the only ones affected by this poisonous emotion; when we first began the journey that is for the moment the Feenx Nest, and which will ultimately be The Feenxrising Fibromyalgia Foundation, my husband and I had some extremely candid conversations about how being the husband of a woman who has fibro has affected his emotional well-being.  Here is his guilt list…

He feels guilty because he can’t take the pain away…

He feels guilty because he wishes I was healthy and he knows it’s not my fault but he still struggles with having to live within the limitations of my disease.

He feels guilty that a wonderful night of love making can result in a full next day of pain, and he feels guilty that he still wants to make love even though he knows the cost.

He feels guilty that he can’t make more money, or work more hours or do more around the house so that I wouldn’t feel like I have to work even though he knows that my work is my passion and without it I would probably just lie down in a corner and die.

He used to feel guilty about not openly sharing these feelings of guilt with me; he says he didn’t want to add more emotional burdens onto what he considers already heavily burdened shoulders.  Thankfully we are both over that now and instead of feeling guilty, we both feel supported and trusted. 

I even had a close friend and fellow film maker tell me how guilty he felt that he didn’t do more for me in the past so that I could have been less stressed, even though, the only reason he didn’t do more is because I didn’t tell him I was sick and needed the extra help, which of course now I feel guilty for and so on and so on…

I mean seriously… does it ever end???

It has for me; only because I realized how dangerous guilt was. 

The thing is, there isn’t really anything to be feeling guilty about, and as indicated above, there are a whole lot of people hiding feelings of guilt for absolutely no reason; in fact they are all feeling guilty about the same thing, a disease that they can do very little about and had no part in causing the acquiring and suffering of.  Sadly, all of them feel that keeping these emotions to themselves will ease the emotional cost to others when in actuality it is in the sharing of our deepest more vulnerable emotions that we find the path to healing. 

The truth of it is that your body can’t heal if your heart is broken and there is absolutely no quicker way to break a heart than to stab it with the razor sharp blade of guilt.  So… since we’re all feeling guilty for the same thing, and since that thing is out of our control, can we just agree to let it go, to be more open and honest with those we love and put our energy towards more positive pursuits like finding the things in life that bring us joy… because just as surely as guilt kills, so too does self-love heal; so please, let’s just all do more of that.

Niki Norlock