Learning Through Pain

I woke this morning with a headache, a seemingly innocuous event in itself except I have not woken with pain in my head for nearly two weeks now.  The first few days without pain as the first thing to register in my early morning grogginess, were treated with a wary suspicion, “Will it last?” I’d ask myself. But the glorious pain-free awakenings continued and soon became the welcomed next stage of recovery.  Oh the relief of waking, stretching and sighing as no pain haunted my skull first thing.  After close to four months of constant headaches, this was a much-appreciated respite.

This morning though, I woke with pain in my head but I still took a moment to stretch and give the darn thing a chance to leave. Propped on the edge of the bed the pain increased and extended into the bones around my right eye.  As soon as this happened, I realised I haven’t had bad pain around my eye for a little while either.  It still aches some days and I cannot tolerate any pressure in the area, but it has been improving.   In order to recognise this subtle improvement though, I needed perspective and this is what this morning’s strong pain gave me.

I medicate myself appropriately and begin attending to the important activities of the morning namely opening up the house to capture the beautiful desert morning air and making coffee.  As I move about these tasks, I ponder the pain.  I am no stranger to pain particularly after my spinal injuries and rehab where I was treated by a pain specialist and undertook pain management lessons to learn how to live with debilitating nerve pain.  The pain I have had post brain surgery has persisted for longer than I thought it would and at an intensity that has surprised me.  A bad headache debilitates my capacity to think as well as move, prevents me from reading, watching television or even listening to music and can with persistence leave me lying upon the bed with ice packs fore and aft.   I recall reading that it takes most people up to a year to feel they are returned to their pre-op ‘normal’ and that many people continue to have headaches well up to six months.  I had forgotten this and listened when my surgeon told me the headaches would last only days or weeks.  Surgeons!  I know better than to listen to surgeons about recovery! They are about as reliable as used cars sales people when it comes to recovery time.

As I think about this morning’s pain, I use the mindfulness approach to tune into and distinguish differences in sensation. In using this approach to pain the goal is to observe it, take a breath when it strikes but not react emotionally nor even physically. The goal is to distance oneself from the pain and what we tell ourselves about it and to recognise pain simply as sensation.  Through this we also acknowledge that pain is there for a reason and it is important when recovering from serious surgery or injury, that we learn when to heed the call for rest and when it is ok to work through it.  This is an exceptionally fine line and in order to navigate it, we must be tuned in to our bodies and understand the message the pain in sending.  This helps prevent one becoming distressed by and merely reacting to pain. It takes practice but it helps enormously, when you remember to do it. I have been reconnecting with this practice (thanks to a reminder from a friend) so this morning whilst I took the appropriated pain medication; I also explored the sensations and refrained from telling myself negative things about it.

I have over the past weeks clearly identified the variety of headaches I get and learnt some of the triggers for them, enabling me to better manage or even delay them. I still have the pain and it still causes me to modify my behavior when it strikes hard but I don’t worry about what it might mean, don’t feel sad or down about it. I’ll admit to occasionally still feeling frustrated that I can’t just do what I wish to without planning around this companion but largely, I accept that it is a part of this journey and for the time being, me.

 

 

 

 

 

Recovery Reflection

“Both abundance and lack exist simultaneously in our lives, as parallel realities. It is always our choice which secret garden we shall tend. The invisible underbrush holding us back is our own thoughts.   When we choose not to focus on what is missing from our lives but on the abundance that’s present – love, health, family, friends, work, and personal pursuits that bring us pleasure—the wasteland falls away and we experience joy in the real lives we live each day.” Sarah B Breathnach (2005)

A little over a week ago I wrote a post, laden with self-pity. It wasn’t my finest work, filled with errors and morose content. After posting it, I was plagued by a constant worry at the back of my mind that eventually saw me pull it down a few hours later. Asking for help can be challenging enough but to do so publicly, left me feeling vulnerable. I forgot that my email subscribers receive every post in their inbox moments after I release a post, negating my attempt to hide it.

At the time, I put my morose mood down to having a difficult week being unwell with a persistent sinus infection, which added greatly to my head pains, which in turn fueled my sense of recovery paralysis. But an interesting thing happened. A number of people contacted me, each with their own thoughts of how we could help motivate one another. In each correspondence lay sign posts for me to the many tools I already have at my disposal but have been neglecting to use or apply, and to new sources of inspiration and assistance.

This past week has seen a friend in Brisbane and I become walking buddies in that we phone or text one another at an agreed time to prompt us to begin our scheduled walks. It has been easy to set up and wonderfully effective in getting us out the door as promised. Another friend identified a few things in her life she would like to dedicate more time to and has since made a change to her schedule, providing her with time for walking in the mornings. She has also spoken with her wife about some of the priorities she wishes to pursue and was met with nothing but support. Yesterday a friend in Melbourne agreed to be my meditation buddy, so we can encourage one another and have someone to speak with as to our experiences. And my marvelous mother committed to walking a bit more in support of my efforts and has already surprised herself with how far she can go. She recently told me she, “continues to stagger along and despite some sunny days, still gets a sweat up shivering.”

What a bounty of rich rewards from an ill-considered plea for help!  When each of these people wrote me they shared something personal and vulnerable, which has both moved and helped me.  I am enormously grateful.

In the past week I have recommitted myself to meditation and my studies in this area, ensuring that I spend some time each day connecting with this deeply soothing practice. I began a hydrotherapy program with a session in the pool with my physiotherapist. A strenuous but rewarding work-out that left me tired but not weak, reminding me of how good it can feel to exercise within my capabilities. Although, there was a somewhat embarrassing but funny-in-hindsight moment in the whirl pool, when after having me walk many laps going with the flow of the water, the physio had me stop and turn against the flow. My legs were instantly swept out from under me with the rest following post-haste, had he not caught me when he did, I would have been dumped most unceremoniously into the middle of the kiddies pool.

I am walking at least twice a week and encouraging Jason to join me when possible. Fridays are also now marked out in the diary for my Pilates gym rehab program and recovery time, as it is quite challenging for me just now.  As I have begun to accept that my recovery is going to go at a slower pace than I originally thought, my exercise routine has been developing right under my nose.

I now realise that I haven’t, as I feared, changed from being the hard driven ‘excel at rehab person’. It is those very traits that have been making me feel so bad, begging to be released to get to work with my body.  The pain medicines have been providing a buffer, slowing things down and giving me time to rest and recover.  I am so used to my own mental ‘whip-cracking’ to keep my life on track that its absence has terrified me, leaving me blowing in the wind so to speak.

This past week has seen a lot of thinking going on in this head of mine and I have realised that I have been making myself miserable.  The effects of the medications has certainly blunted my motivation and caused a great deal of lethargy but I have been looking at this recovery as an ‘all-or-nothing’ deal.  If I can’t exercise to the absolute limit of my capabilities, then clearly I am failing, right?  Wrong and I can see that now.

Brain surgery is a big deal and it turns out, I have needed (and still do) a great deal of rest to recovery from the operation, the general anesthetic, the hospital stay and all the other meds pumped into me.  I seem to be the only person not to know this going in to the op or coming out.   I do now however and I refuse to let myself judge my progress poorly any further.

Thank you for reading and supporting me throughout this major life event and your patience as I find my way back to full health.

Pity Party For One

I wander about feeling almost normal, fewer and less severe headaches to remind me of what I have been through. Every now and again though, the thought, ‘I had brain surgery’ looms so large in my mind, it casts a shadow over all else. When this happens, I am struck dumb momentarily.  As I begin to think upon this ridiculous pronouncement from my own mind, disbelief and sadness course through me like sludgy rivers on a path to nowhere. Despite the evidence to the contrary, I cannot reconcile this; I mean really, it does seem a little ridiculous, does it not?

There begins my very own pity party, a come-as-you-are affair of limited value.  I begin thinking just how darn unfair it is, after all I have been through, to have this happen. Useless. Unhelpful. Waste of time. Thoughts. Nonetheless, there they are, circling my mind, triggering feelings of loss, sadness and even anger.

I try when this happens to reign in these useless thoughts. It might seem ok to feel this way occasionally but I know that if I allow myself to indulge in this type of thinking, I could be buried alive by the resulting avalanche of negative emotions, memories and thoughts. My life has been difficult at times, downright depressing at others. I choose to not dwell upon all of that as it leads me nowhere. I prefer to look to the future and focus upon all the good, wonderful things in my life, which in truth, vastly outweigh the bad.

After allowing myself to think of the terrible injustice of it all, I can equally quickly remember that I am lucky to be alive. Without surgery, the aneurysm would have killed me, probably within one short year.  Without the stroke in 2007, I may never have had the aneurysm identified and without that, would never had known of the lethal threat it posed me.  Rational Veraina knows and deeply appreciates this but every now and again, it is hard to feel grateful for having a stroke and brain surgery.  Just every now and again.

Am I Prepared For Death?

I woke this morning with this question in my mind. Those of you whom read my ramblings in the lead up to surgery know that I was very much preparing for such an eventuality. Yes, my legal and financial affairs were documented, agreed to and witnessed by the appropriate people. My decisions regarding what use some of my body parts could be put to, was also decided and agreed to by the relevant family members, to whom I am eternally grateful. Consensus or at least respectful understanding in such matters makes the process all the easier.

But am I prepared for death? As I pondered this question in the morning’s chill air, I opened an affirmation app on my phone. Anyone who knows me knows I have used positive affirmations as part of my coping strategy throughout my life. Interestingly (to me anyway), today’s affirmation read, “I am thankful for all the days of my life that I have lived so far, and for all the days I have yet to live. Life is so good.” By Louise Hay.

As my surgery date bore closer and closer, I made a point of thanking those closest to me, for their friendship and all they have done for me. In these somewhat awkward conversations, and whilst believing I would have a good outcome from surgery, I still felt the need to say goodbye.   Some calls were exceptionally difficult to end, as they felt all too final. In my attempts to acknowledge the genuine seriousness of what I was about to undergo, I had to also embrace the prospect of my death.

During this time, Jason and I became kinder and gentler with each other, as though the possibility of death somehow brought life into sharp focus and we wanted to ensure we were fully present with one another. We were more loving and appreciative of the other and took time to rest quietly in each other’s company; many hours were spent cuddling on the couch, some times in silence, others discussing all those difficult details.

Now, many weeks later, after all going well and recovery progressing, I find myself noticing how life’s little annoyances and frustrations intrude in the bubble of gentleness the prospect of surgery created around us. The occasional snappy response, the grumbles, the inattentiveness that we all experience, no matter how much we love and care about those closest to us.

How can we live our ordinary lives and still hold onto and cherish those we love, in every encounter, every moment together?

Thankfully, I think we are doing pretty well, as the seriousness of what we have just gone through together has affected us deeply, made us face what we could lose. Occasionally one or the other forgets and gets cranky but we are quick to apologise and move forward together.

Jason and I have a rule that gets deployed at times of enormous stress and that is simply to be kind to ourselves and each other. At these times, we focus upon being gentle with our words and supporting one another usually by focussing on how events are impacting the other rather than ourselves. We also lift the takeaway and junk food embargo to enable us to eat our feelings but for a limited time only. We don’t need to add obesity to the list of things to worry about!

As I ponder my preparedness for death, it makes me reflect upon my life and allows me to see the good, the lovely, the necessary and the wonderful.  A moment spent watching a parrot feeding in the garden, of feeling the sunshine upon my face, of inhaling the heady aroma of good Australian tea, of watching my husband prepare a meal for me, of gathering wild flowers, of laughing with friends, of reading a good book, of waking in the warm cocoon of a doona, of holding hands with someone I love, of walking unaided, of biscuits baking, the list goes on and on.

It might be clichéd but it is genuine, thinking about one’s own death shifts you into a different headspace where gratitude lives large, fear is diminished, and life takes on a brighter hue.

“Death is a part of life, as natural as the sun rising and setting each day; as natural as a flower blooming one day, and then withering the next.  Life is a terminal disease; we are all dying. It is our non-acceptance of that reality that causes the fear and suffering; acceptance brings peace, calmness. It also brings awareness of the need to live our lives in preparation for death.  This type of thinking is not morbid and unhealthy – it’s positive and healthy because it means we’ll be ready for death when it happens. And it means we’ll be happier now, while we are alive, because we’ll be living a good life – living ethically, avoiding negative deeds, doing positive deeds as much as possible.”

Ven. Sangye Khadro.  ‘Taking the mystery out of death and the after’.

Knowing there are many people worse off than I, often helps put my pain, my journey into perspective. That said, after 10 weeks, today I am completely fed up with having a headache.  The time between pain meds relieving and fading is decidedly short and as I pace, icepack pressed to my temple, checking how much longer it is until I can pop the next pill, I am awash with frustration and fatigue.

I know things could be worse, I know it is better than it was and I know it will improve, but right now, in this moment, the persistent, gnawing pain is wearing me down.  Not brave, not calm and not graceful – it hurts.

Lost

Ever tried. Ever failed. No matter. Try again. Fail again. Fail better.    Samuel Beckett

I’ve been something of a recluse these past few weeks, lying prone in the ditch of a recovery trough.

I don’t understand what is happening. I have no energy, no desire to exercise, no whip cracking, high achieving voice driving me forward; instead, hurtful thoughts fill my mind and the hours as I scrabble about the abyss searching for my motivation.  I am in pain and confused. Rehab and recovery are familiar to me and I know the importance of doing the hard work, inching forward until the goal is achieved. The spark of motivation, previously ever present, is absent.  I feel burnt out, exhausted.

Hours have slid by as I ponder this unfamiliar state and equal time spent attempting to ignore the negative diatribe of my inner voice. Realising after these efforts that I still felt adrift, I tried talking with a trusted health professional and whilst that helped a little, I am still wrestling with the demon of doubt. The only thing left is to write about it and hope it will be cathartic and help me process what is happening within.

 

 

 

 

Rehab Challenge Four

After recently experiencing crossing a busy road in town and the joys of navigating pedestrians, cyclists and cars, one-eyed and with a sluggish brain, I was going to make this challenge something like:

Take earphones, plug them into your ipod or phone. Go to a road that has some road traffic and perhaps a bike lane as well. Select music to listen to. Turn the volume up to a point where the sound is very distracting. Close one eye and keep it closed.  Cross the road.

But, that seemed mean. So I wont suggest anyone does it. Do you hear me? If anyone gets hurt trying that, I’ll be the first to come kick your arse.

I decided instead to go with the following.

Find a sock, preferably clean or an oven mitt. Put sock or mitt over one hand. Don’t move or use the rest of your arm. Now proceed with your everyday activities using only your non-sock hand. If using an oven mitt, you may need to tape it in order to keep it on.    By doing this you will be experiencing life similar to someone who has lost function in a limb and hand. See how long you can manage using only one hand and arm and think about what it must be like to live like that, let alone participate in rehab.

 

Pirates Need Groceries Too

My mum came to stay and help out for a little while, enabling Jase to return to work and catch up on his projects. He joked with someone the other day that he only ever takes sick leave because of me, to which I quipped, “If he would stop moving me around on postings, I might have a chance to accrue some leave.”

Anyhow, my mum was in town to help out and we had an outing one day into town. We were dropped off by the taxi outside one of the two shopping centres in town (Alice Springs has a population of 30,000 so we don’t have loads of shops). As we wandered along, browsing in the window of the chemist and shoe store, I commented on the ‘weirdness’ of window-shopping in Alice. Usually if I go shopping, I know exactly what I want and go to the one store in town that is likely to have it. Despite this we pass a pleasant hour browsing and amused ourselves in the home wares store, commenting judgmentally on some of the ridiculous kitchen utensils now available, you know, banana cases, avocado slicers, specialty garlic peelers, juicers and many other things most commonly done by hand without much effort at all.

I digress.

After our gawking we stopped for a snack and coffee and chatted until I began to feel a bit fatigued. We then ventured into the supermarket for a swift raid and it was here that my brain decided it was done with the outing.  Thursday afternoons can be busy enough, as it’s often payday for many people, add tourist season and the supermarket late afternoon, is chaotic.

I told mum I couldn’t stay, as I felt completely overwhelmed by the noise and colours.  She valiantly offered to do the shopping, telling me to go find a seat until she was done. I did as instructed, finding a seat outside the checkouts so I could find her easily. As I waited, I noticed that every child walking past turned to look at me. Initially I was curious as to why but slowly it dawned on me that it must be the eye patch.

Then one kid, maybe eight years old, caught my attention as his head nearly spun off as he did the double take to stare at me.  Not long later he approached again with his dad and younger sibling.  As they reached the seat, he let go of his dad’s hand and stopped right in front of me, smiled nervously, waved at me and shyly said hello.  I said hello back and he then added, “You look like a pirate.” “Is that so?” says I.  He grins and takes off to re-join his family and I noted he spoke rapidly to the younger boy and pointed in my direction. They both took another look at the Pirate before disappearing from sight.  He was very cute and quite brave as well, I thought.  Although, I admit to myself that I wish I had thought faster and answered him in a gravelling ‘pirate’ voice and scared the life out of him, but alas, a missed moment of hilarity.

Fortunately for my rapidly fading self, Jason was able to pick us up and drive us home.  In the car, I was telling mum about the boy who spoke to me and we were having a laugh about it when Jason indignantly interjected. “So it’s ok for a boy to call you a pirate but when grown men talk about it, its not. Just what exactly is the age where it goes from being funny to not?” I looked at him considering a number of responses (no, not all of them polite), mum jumped in with an answer, “The age when they should know better.”  It may not be right but it feels very different when a child, almost reverently, thinks I might be a pirate to when adult men, deliberately call me out about wearing a patch for the purpose of making fun of me.  That said, I’m thinking of hiring myself out to entertain at kid’s parties – I could make a fortune.

 

Ode (Owed) To Mothers

My mum returned home yesterday after a ten day visit to help out.  Apart from needing a reprieve from Melbourne’s winter, I sensed mum needed to see me and how well Jason and I are managing.  That is not to say that having her here was not helpful, quite the contrary.

So, mum, thank you for:

Every dish washed and put away,

Every meal cooked and served or frozen,

Every cuppa made and shared,

Every conversation distracting me from my discomfort,

Every hug of reassurance,

Every joke and laugh shared.

Thanks for being the sous chef and stepping in when grand meal delusions overcame me.  (I’m sorry Jamie Oliver but your ‘15 minute meals’ still take me an hour.)

Thanks for bringing me so many wonderful supplies for card making and scrapbooking, despite their weight.  I’m glad your suitcase was lighter on the way home even with that full bottle of tequila wrapped in your raincoat.

It was marvelous to have someone nearby who understands the impact of dizziness, vertigo and the related symptoms and consequences.  It was great to have someone around who understands that if whilst walking, I let my hand trail outward periodically touching the wall or objects beside me, I am having a bad dizziness day and need to ensure I am not going to fall over or walk into anything.  Walls are very unforgiving, they insist on leaving bruises.

So while yes, we had you come stay to give you respite from a harsh winter down south, and to reassure you that I really am healing well, you still contributed a lot whilst here and we are grateful.

Thanks mum.