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