Like Poltergeist....they're ba-ack!!!!

Had 3 blissfully pain free days and nights this week, free from the dreaded agony of cluster headaches and no 'shadows'!!  It felt beautiful and surreal and, I even felt excited for a few moments to think that just maybe I'd had my shortest cycle ever - 4 weeks.  Alas, the wretched things followed me home last night and once again, I was up during the night, deep breathing, rocking, soothing myself with words of encouragement, feeling anger and despair and, taking medication, waiting for the agony to abate.  It was intense and frustrating but I got through it, certain that there must be an emotional cause and struggling to pinpoint it.  It took me another 21 hours to work out the trigger: self care and being nurtured; being deserving of nurturing.

I feel sad about the origins of that trigger and about how much suffering I've endured.  I would never wish clusters on ANY person, OR their families.  Cluster headaches are such a horrible, powerless thing to experience and I really feel for all of the partners, children, friends and loved ones who have had to sit by watching the agony and be so powerless to help.  I'm sure it was/is ghastly for those who stood by me for the past 30 years seeing my hope die slowly and watching me in so much agony.  I'm really very grateful to you all and especially my kids.  I can't begin to imagine how hard it's been for them and I still fight to beat these things, which I still believe I will.

I've discovered the trigger from last night and worked through a 'process' tonight, had a little cry, shared a bit of grief and anger and tomorrow I'll finish the next step.  I'd like to ask my brain right now to please let me sleep pain free tonight so I can dream joyfully through the night of a miraculous future where pain is no longer my teacher and all of these tiny baby steps will have created a fabulous journey of strength and wisdom.  Although I may still use my medication, I will not ignore or discount the emotional origins/cause of this pain. There are too many signs: the time is during the liver meridian time every night; headaches are caused by anger (fear), I get irritable and beat up on myself when I have them, my temperature spikes suddenly and, I wake up needing to pee (pissed off).  No, I will not avoid searching for the emotional cause of these headaches, nor will I give up practicing peaceful activities that support my brain in growing accustomed to being in a parasympathetic state coz I deserve to nurture me and my hypothalamus deserves a rest.

Till next time

xxjxx

O.U.C.H

Todays begins week 4 of this years cluster headaches (CH).

While I know I am blessed and most of the time, I feel blessed too, it is really, really hard.  My mind keeps jumping to past and future - "30 years I've suffered, I feel scared they will torment me for another 30 years",  I don't blame my brain for jumping to that, 30 years IS a long time to survive clusters and a couple of times I almost didn't survive them.  I certainly don't feel confident I survived them intact. They had a huge impact on many areas of my life, especially my marriage and my sanity.  I can't imagine how hard it was for my kids seeing me so desperate and scared so many times either.  My finances were also impacted and I had virtually no social life.  I once had no sense of self and no self esteem, clusters became my identity for a lot of the time.  Who would I have been without cluster headaches? I'll never know. Clusters dictated and controlled me throughout my teens and early twenties because I had them for 6 months of every year and I was completely powerless in their wake.  In my late twenties, when I finally got a name for what was crippling me (clusters), I began to get some power again and I searched, in vain, for relief and a cure.  I found neither.  There is nothing that stops clusters.  They have no known cause, no known cure and very few things provide any relief at all. (Recently, magic mushrooms have been touted as effective but I will not feed that to my brain, it's been through enough),

I have tried many, various medications at the suggestion of doctors and specialist and frankly, I don't think they have any answers either.  I've tried many traditional and alternative therapies and ideas.  Nothing has worked.  Oxygen is helpful but it doesn't work any faster than deep breathing exercises do.  The only real relief I've had is from a highly toxic poison mixed with caffeine (Cafergot) but sometimes it's useless too.  I think the most frustrating thing for me has been the total lack of empathy and understanding I've encountered from other people.  Most people compare their migraines to what I'm experiencing but I've had migraine and I welcome them.  I'm sorry but migraine feels like a head cold compared to clusters.  Migraine I can handle.  Clusters beat me down, torture my whole body, mind and spirit and leave me hopeless and despairing up to 9 times a day!  Clusters are the worst pain I can imagine, they often leave me terrified to sleep, despairing, wound-up, irritated, miserable, angry, sad, scared and deflated.  I would not wish clusters on anyone, anytime.  They are monstrous, insidious, catastrophically painful, awful, horrible, destructive and relentless.  

Clusters usually strike within an hour of going to sleep, no matter what the time.  They've recently been found to be linked to the hypothalamus and so affect many areas of the brain and nervous system.  I've realised recently that although the brain is designed to flood the body with endogenous opioids when pain is inflicted, none are released when I get clusters, I feel the entire thing in the moment and the intensity of that pain is staggering.  I've had 2 kids naturally and compared to clusters I did not feel anything during childbirth.  Clusters feel like  there are lots of people inside one side of my brain trying to escape using ice picks to hack through the top of my head, my neck, eye, jaw, nose, ear, gums, temple and glands.  My entire back burns constantly from the increased tension.  My eyelid droops and my eye weeps, my nose gets stuffy, I stop breathing, the blood pounds in my head and my temerature spikes suddenly. I get about 5 minutes notice and then BANG.

Over the 5-9 weeks that each attack lasts, they get more intense and painful each day.  There are times I've had none all day and then 9 of them, 20 minutes apart during the night.  I become irritable and hypersensitive to light and sound and the terror builds as my brain tries to prepare for weeks 5-9, which are always agony.  Sleep is something I both dread and crave by then because I'm so exhausted from the pain and lack of sleep.  Any type of rest or relaxation brings on a cluster almost immediately as does exertion of any kind.  

These days I can get through the first 4 weeks with gentle exercise, breathing techniques, grounding, massage, Cafergot, coffee and painkillers to dull the constant ache that 'shadows' provide.  cluster Shadows are not as intense as cluster headaches but shadows don't stop at all and are debilitating in their own way, relentless and wearying.  

I was once so terrified of clusters that I set alarms 20 mins apart to make sure I never sat still longer than 20 mins!  I was so exhausted all the time.  These days I have accepted that I can do little about it but ride them out and keep hoping they will eventually end.  I pray they will never come back when they suddenly run their course and just stop each year.  Every couple of years they visit twice, which is really hard.  

For now, I just feel the anger, fear and pain and try to remind myself to breathe.  I will win.  I will overcome.  I will beat this.  Now that I have found hope again, I feel empowered to thrive and no drat-awful, soul destroying, wretched pain is going to stop me.

xxjxx

C'mon now

Learning to speak to myself lovingly has been difficult because I had to learn from scratch in my 40's.  For most of my life, I was spoken to with criticism, disdain, contempt and negativity.  The people in my life did not know any better themselves, nor did they have any concept of self-love, therefore they could not teach me.  I do not harbour any thoughts of blame towards them any more.  I feel sad that so many people have so little knowledge or experience of self-love.  In this fear-infused culture, it is difficult to grasp self-love with so many messages of how selfish it is to love ourselves.  How can we hope to love others, for others to love us, if we cannot love ourselves?

Self-love has nothing to do with being selfish.  If I can love myself, I automatically, unconsciously give those around me permission to love themselves and to love me.  If I love myself, I will show people by example, how to treat me with love.  I will 'command' respect and not then need to 'demand' it.  I will know within myself that what other people think of me is there business and I will not let it bother me.  I will see myself as worthy and deserving.  I will give out and receive love with a full heart.  I will be healthy and happy and free.

I am committed to loving myself fully, deeply and unconditionally.  To seek within myself that which my Creator has made me to be.  To look past the imperfections I have perceived myself to have and find the unique and soulful person that I really am at the core of my being.  To embrace who I am and let go of the need to be anything more.  To speak kindly and honestly to myself, and to revel in being me as I am, giving and receiving in love in balance.

Learning to speak to myself lovingly has been difficult and I'm still learning.  I'm much better at it now.  One book that has been very helpful is "Growing Up Again" by Jean Ilsley Clark and Connie Dawson.  It not only has great, loving affirmations, it also has information on re-parenting which helped me to understand myself at different ages and stages so I can become a happier, more well-adjusted self now. I don't need anyone else to give me a happy childhood and I have not missed out, I just waited until I can really enjoy and appreciate childhood :-)

I can now love me, I hope everyone finds this joy for themselves too.

xxjxx

Clusters

While pondering what to write for this weeks blog, cluster headaches sprung to mind.  It would be interesting if they didn't, I'm in week 2 of a cycle.  Historically they have lasted between 5-9 weeks and I have no way of knowing how long they're going to 'visit' for until they leave again.  They have 'visited' me since early 1985 and I have, at times, struggled to survive them.  Many times I didn't survive with my sanity intact and even made 2 trips to the psychiatric unit during clusters.  At times I feel sad, angry, cheated, scared, terrified, beaten, hopeless, doubtful, infuriated, fatigued, irritable, powerless and even suicidal.  That's during an attack.  

After 30 years, I've come to know clusters well and can get through the first 4 weeks now with coffee, smokes, relaxation exercises, deep breathing, self talk, prayer, gentle exercise, OTC painkillers, detriggering, emotional release, massage and patience. That's the first 4 weeks.  Then they ramp up!  However long they last after that is excruciating and, no matter what I do, I feel powerless to ease the pain.  I think because by then I am so tired - clusters wake me up 20 minutes after going back to sleep from the last attack, over and over.  I used to be terrified to sleep when I had them.  Terrified of the pain I knew would come if I went to sleep.  Now I figure I need to snatch as many minutes of sleep as I can before another one strikes.  I find it interesting that when I don't have clusters I only have 1 or 2 cups of coffee per day or I get agitated but when I have clusters I can have (and have had) up to 12 cups with no agitation at all, just relief from the pain.

The medications I've been prescribed over the years have been ghastly.  I've had all of the anti-inflammatories available, barbiturates, anti-depressants, anti-psychotics, codeine based, migraine medications, blah blah blah.  I even gave up smoking for 2 years.  None of that worked and most of them had no effect at all.  Oxygen worked the best and Cafergot.  The downside of Cafergot is that it is toxic and I can't have more than 10 per 7 days but I get up to 75 clusters per week after week 4 so I put off taking them and suffer horrendously in case the next one is even worse.  I'm lucky because mine usually pass in 20-30 minutes but some of the really awful ones last for over an hour and nearly send me totally insane with pain.  The muscles in my spine scream in agony for weeks.  Shadows pervade for the entire period.  Shadows are awful because they almost never stop.  It's hard to describe cluster shadows but basically it's like having a 9 week migraine with no break.  Light and sound pierces my eyes and brain and I weep openly, trying not to scream in agony for weeks.

I'm beginning to recognise positive changes though.  For the first 12 years, no one (and I mean absolutely no one) believed the pain I was in.  Everyone had advice and ideas but would not let go of the notion I had migraine, not even doctors and specialists.  It took 12 torturous years to get a doctor to finally admit that it was cluster headaches.  By then, I was almost drug and alcohol addicted via failed self medicating and as I was to discover, alcohol makes them worse!

I had spent thousands of dollars on medical options and alternative therapy in my desperation to cure myself and nothing worked!  I can't even dissociate from it.  But, during those first 12 years I had in excess of 7,000 individual cluster headaches (6months of every year). That's about 600 each year.  Over the past 18 years since then, I think I've had about 7,000 more (about 388 per year) but notice the extra 6 years in there.  Now I get approx. 280 per year (over 9 weeks).  So there has been a vast improvement.  Also, once upon a time, I could never have got through the first 4 weeks like I do now.  Back then I was paralyzed with pain and terror from the first sign of a cluster and now I deep breathe through the first week and sometimes the second week too. 

Clusters have taught me to self care, something I never knew how to do once.  I'm much gentler with myself than I used to be.  They've also taught me mindfulness, patience, acceptance, humility, perseverance, compassion, empathy, reverence, determination, neuroscience, maths, philosophy, faith, hope, love and strength.  Today, I don't want to hate clusters as I used to because I am not a victim, I am a survivor.  I'm surviving cluster headaches one painful, searing headache at a time and I know now - I am stronger than any pain.

xxjxx

Epilogue to fear

Last week I wrote about fear.  Continuing on from last week, I thought I would share something that was an incredible experience for me since then.

After posting last weeks' blog, I became very excited about recognising and naming fear for what it is.  As quickly as I did that, more fears kept presenting.  It was like a cycle and I was intrigued by it.  I felt confident I was moving forward and then, crash, I fell into it and it erupted out of me in a tirade of self doubt and self loathing.  I owned the behaviour and apologised immediately although I still felt guilty and ashamed (more fear based reacting!)

I spoke to a friend about how I want to be able to turn fear into love, thus disempowering it.  A couple of days later while mulling it over, I recognised that fear is a part of me and has been almost constant within me for as long as I remember.  These days, I refuse to talk to any parts of myself in any way that is not loving and I felt challenged to do that this time so I thought back to how I address the critical parent in me (transactional analysis) and viola!!  I said to fear, "thank you for being such a constant companion fear.  You have always been there for me when nothing else was.  You have worked so tirelessly and without thanks for so long to teach me and keep me safe and I have never acknowledged that.  I feel so grateful to you for all that you have done and I'm sorry.  I would dearly love to work with you to find a way for you to take a break, to relax and share some of the load.  Please know that I love you and I want to help you".

By the time I finished, fear was gone and I was filled with love and joy.  I wondered how I had not thought of this sooner but everything has it's time.

I've been struggling since then to process what is coming up but I have immense hope and faith.  I let go of the need to control the timing of my healing a long time ago and I enjoy the freedom of allowing my emotions to guide my journey and not push or have expectations of myself around that.  It's not easy but it has been rewarding to stress less about what I want to happen and just simply allow myself to be.

Last night I tried processing anger and wondered why I was left feeling tense and un-joyful and in talking about it with a friend today, I realise it's because I've moved through that stage and have found a new level of being that involves loving more than fearing.  Last night I was trying to release anger that is born of fear and because of the recent shift in me, my brain does not want to go that way so tonight, I will process the same things with love and I imagine that will feel much better.

Till next time

xxjxx

fear

I refuse to give fear any conscious power any more.  So much so that I am not even spelling it with a capital in the title here.

fear has been a constant companion of mine for as long as I can remember and over the past 3 years I have been trying to recognise it more quickly and feel the energy of it, to move through it as quickly as possible and let it go so I am free to feel love and joy instead.  It's not easy.  My brain has a very strong map for fear and at my age, my brain is loathe to create new maps, but it can and I am.  By doing one thing different, taking tiny, baby steps, I feel certain that change is happening.  It takes time and practice and I am determined, I believe I can do it so I know that I am.

Last night I was very steadfastly declaring how strongly I feel about exposing fear for what it is to me and wrapping it with love.  My new catchphrase for myself is "if it is not from love, it is fear".  I knew, even as I said it that I was sending out some sort of cosmic challenge by merely speaking those words and I am ready to pay the piper on this.  I want to BE love and I cannot do that if I stay in fear.  I have vowed to serve God and I cannot do that if I serve fear too.  I want to be humble and fear will keep humility from me so I have declared war on fear, peaceful, loving, resolute war.  It's funny to me this is the first time I have been able to think of any kind of war in a positive way.

And it is positive.  As I have been afraid of so much for so long, fear is a part of me like any other and I will therefore not abuse that.  I am committed to loving every part of myself unconditionally and finding a purpose for everything that makes me me.  I am now on a journey of discovering how I can love fear unconditionally, embrace it, love it forgive it and find a new role for it that works for all of me.

Today I could sense fear poking at me and I stood firm over and over again.  Each time I said "hey, that's fear, come back here.  God can you deal with this."  Each time, fear left defeated and each time, I felt more happy and strong.  Unfortunately I allowed my attention to wander and fear sneaked in and bit me again more sharply.  Then I was triggered and all my fear came screaming out through tears, anguish and self-hatred.  This is what fear does, it turns me against myself and others and takes me away from love, from being who I want to be.  This is fear and I am truly sorry for the pain I cause in my fear.  I have apologised and learned.  What happened to me today was a timely reminder to be vigilant and to love myself more.  That fear was able to take hold because I was not ready to take responsibility for what is mine and so I took responsibility for what is not mine.  I now know that I need to continue on as I do, loving, learning. Exploring and dreaming.

I need to acknowledge and accept where I'm at and keep moving forward one, tiny baby step at a time.  Sorry fear, love lives here and if you don't love, you are no longer squatting in me.  You have hereby been served notice.  You tenancy is up and I will not be renewing the lease.

I'm off now to sleep restfully and peacefully.  No fear.

xxjxx

Life experience matters

I wash 15 before I figured out how to wash my body properly instead of just letting water fall over it.  I was 17 before I learned to iron clothes and to this day I hate it.  I learned to apply makeup from Dolly magazine.  I learned to cook properly from Australian Women's Weekly and in Home Economics at school.  I learned English from Christine Lovatt and Mr Wisdoms Whopper.  I learned mathematics from living hand-to-mouth throughout my late teens.  I learned optimism from counsellors.  

I'm still learning about hair care, skin care, nutrition, exercise, my body, my brain, my feelings, my spirituality and my self.  I am now 45.

There is no one to blame for my lack of information.  My mother taught me all that she knew and then some.  Sadly, she didn't know about self care either.  Had my father been there, he would have had little more to share.  Self care was not included in their own upbringings.  

I feel sad about all the people who even now, do not have any concept of self care, self worth, self esteem, self love or self nurturing.  I know people who don't know how to wash dishes, who don't know how to sweep, mop or vacuum a floor, how to cook or clean, how to wash, how to iron, how to brush their teeth, how to say yes or no, how to "be".  Every one of these people has extraordinary gifts of their own.  Many are completely unaware of the information they lack.  Each is incredible in many ways and, they have taught me to judge less and love more.

Although I have grieved what I thought I lacked, I have a huge appreciation for what I've got and my motto is: "if I've learned something new, I've had a very good day".

I don't want to be a genius, nor do I consider 'knowledge' all that important.  I am simply trying to provide the child parts of me with enough learning to grow up in a healthy, well adjusted way, with nurturing, good health and nutrition and to have reasonable expectations of myself.  and I am very happy to encourage others to do that in their own way too.

xxjxx

A long, living, loving life

Today, I sat beaming from ear to ear, face and hands covered in orange paint, in a class full of people.  I felt happy, peaceful, excited, scared, anxious, sad and content all at the same time.  I had just jumped another chasm of trauma and landed safely on the healing side of me.

During this leap of faith, I experienced the sensations of feeling fear in my body as it happened.  Not old fear from the past or imagined fear of the future but sudden, trembling, real and instant fear from that very moment and I gave myself permission to stop and allow it to pass through me unhindered.  It was scary.  It was also incredible and I felt so free, alive, real and whole as I did that.  I wanted to whoop for joy but I gave fear it's time and then gave myself permission to just be.  I moved through many facets of myself in wonderment and awe afterwards and I felt completely at ease being young, younger, old, older, male, female, human, spirit, whole and shameless.  I experienced being a healthier me today and I loved it.  

The fear came from claiming back my body and letting go of the unconscious need to feel my body through pain.

A wonderful woman sat silently by me as I gifted myself with this blessed moment and in her heart space, seemed completely at ease while she waited.  I feel blessed and grateful today.  I had only ever fully experienced fear before as terror, pain and powerlessness, never before had I felt simple, clean fear.  I have had so many moments of that overwhelming horror that my brain had learned to switch off to the slightest exposure to fear.  It turns out that while I was very afraid of many things, I could not feel fear inside me because without terror and pain, the instant numbness always took over and rescued me, disempowering me in its own way.

I hated my body for many years, for many reasons and I've been working towards changing that for a few years now.  Over the past couple of weeks, I knew something big was about to happen within and I was content to just let it surface in its own time and way.  I have learned great patience and it really paid off today.  Resisting the urge to hurry it up because others wanted me to.  Choosing resolutely to make different choices for myself.  Repeating every day "good morning body, I love you".  Becoming more mindful of how I speak about my body and the biggest shift, finally acknowledging, understanding, permitting and accepting that my body is a part of who "I" am.  That might sound weird but I have been so disconnected to my body my whole life that it did not actually seem like a part of me at all.  I'm not sure I can explain it and maybe I don't need to.

Now that I have welcomed my body into my 'being' I will listen better to it, honour it more, cherish it more and love it more.  I know I will, I've already started.  I feel sad that it took me so long when I have already learned to love every other part of myself unconditionally - my soul, my brain, the fragments of my psyche - it's okay to feel sad, right now.  I will feel it, move through it and celebrate that I can feel the sadness because I am who I am and everything else is a big, beautiful bonus.

For many years I abused my body in my ignorance and I am sorry for that.  I have gorged and starved my body at times.  I have worked it like a slave till it broke down, cracked the whip over myself while exercising and had no concern when it became sore or tired, lazed around till it atrophied, deprived it of sleep and plied it with alcohol and drugs to distance myself from it further, medicated it to make it more numb because I did not understand the pain was a warning.  I've caused damage over the years to my poor, long suffering,  wonderful, amazing body and now, slowly but surely, I am repairing that damage with love, patience, kindness and awareness.  My body is a temple and I will love it my own way.

xxjxx

Love and fear

Love.  The only thing real.  Fear.  An illusion I create within myself when I am not loving.  Judging. A fear based behaviour that soothes my ego and feeds the fear.  Blaming.  Another fear based behaviour that I can deceive myself with when I feel afraid.  Control. A natural, non-love reaction to fear.

Fear:                                          Love:

shame,                                      confidence

control                                       abandon

judgment.                                  acceptance

blaming.                                    gratitude   

ego,                                           soul

limiting.                                      liberating

labelling.                                    individuality

scorning.                                   celebrating

justifiying.                                  embracing

suffering.                                   experiencing

surviving.                                   thriving

doing.                                        being

closing off.                                opening up

stifling.                                      breathing

inertia.                                       exhilaration

hopelessness.                           miraculous

deadening.                                life-giving

war.                                           peace

anger.                                        patience

earthly.                                      ethereal

isolation.                                    solitude

separateness.                            togetherness

me/you.                                      us/we

Oh that I may cast off my illusion and stand more firmly in love.  Be more loving.  Think more lovingly.  Speak with love.  Grow familiar with love.  Welcome love.  Accept love.  Embrace love.  Be love.

© June Parkin 2014

Self forgiveness

I took part in a discussion about forgiveness today with some loving, open-hearted people and although I once spurned the very idea of forgiving those that I had once felt very hurt by, I realised with joy today that I truly have found forgiveness for each of them now.  I now choose to believe that each of those people were coming from a place of personal torment within themselves, a lack of self-awareness and self-love and that they each have taught me something very valuable too.  I did not suddenly wake up one day and decide to forgive.  Forgiveness was a whole journey of its own for me and I gave myself a lot of time and patience to travel that particular path.  It was where I wanted to get to and now that I am there, I feel more peaceful within myself.

Today I realise that self-forgiveness has not been as easy and I still have some distance to travel to that destination.  I know the abuse and trauma is not my fault.  It is the years of self abuse, self loathing, self flagellation and self doubt that still lingers in my heart.  Still keeps me a victim to feelings of worthlessness.  Although my intellectual self 'knows' that I learned to treat myself that way over time, via poor examples being set, my heart cries out to me over all the times I started to love and value myself and slipped back into the old, self destructive patterns of inactivity, over eating, mindlessness and apathy.

Right now, I choose to forgive myself for all of the damage I have suffered at my own hands, just as I have forgiven others.  I choose to be kinder and try harder to not judge myself for the mistakes I have perceived myself to make and recognise my efforts today instead.  Because I forgive myself, I can now enter another level of peace and look forward to the miracles I am sure will abound in self love.

xxjxx