And The Eyes Have It

In all my healing and muddling through I have neglected to provide an update on my vision and associated things. A little while back I had a review with the Ophthalmologist at the Alice Springs Hospital eye clinic, to follow up on my nerve palsy, caused by post-operative swelling compressing the nerves of my eye, causing severe double vision. My friend E an Optometrist, offered to come along for morale support. Thinking it would be wonderful to have someone I could pepper with questions, should I be left with any, I welcomed E’s company. On the day, I was pleased to see my friend was there ahead of me, chatting amicably with the staff. In a place remote as Alice, my friend not only works for a private business but also with the hospital staff undertaking very remote travel to provide eye care in Aboriginal communities and also spends time working at the in-town Aboriginal health service. She is extremely busy and dedicated and it is this that makes me truly appreciative of her taking time out to accompany me with my relatively straightforward eye condition.

For more on eye health in Central Australian Aboriginal communities, these links may be of interest. http://www.hollows.org.au/our-work/what-we-do/improving-indigenous-health & http://www.hollows.org.au/news-media/town-alice

E introduced me to a colleague, Ms. M, who was visiting from Tennant Creek, the next largest town, 500 kilometers heading north, with a population of around 3,000 people. She was down to observe the Alice team at work for the day. I am not sure who would be seeing me but I have heard a great deal about Dr. Tim Henderson and the great work he does and doubted my condition would warrant his attention. After a short wait a dark haired young man walked into the waiting area, looked at the file in his hand, “Ahh, um, Ver-riana.” “Veraina,” I corrected gently as I stood.

I followed as he led us to a consulting room, with a couple of old chairs, a small desk and piles of boxes and equipment. I made my way to the seat next to the desk as E slipped in behind me, taking the chair by the door.   I told the doctor she was there for morale support (not realising he was a visiting student doctor and had no idea who she was).

He introduced himself and explained he would be examining me and doing all the tests before the Ophthalmologist would see me and asked me to please tell him the circumstances leading to my visit. As I began, I recalled a conversation E and I had a couple of weeks before my operation about patients wasting valuable time with trivialities. We were cooking breakfast whilst camping at Boggy Hole and somehow we got talking about what information is important to provide and her frustration with clients whom when asked the polite question, “how are you today?” go on to spend most of their appointment time actually answering the question, usually talking about anything other than the reason they are at the Optometrist. I recall telling her that after all my practice attending medical appointments, I thought I had become quite good at answering questions appropriately and providing relevant information.

I recounted the pertinent events to the student doctor relating to my eye issue, as concisely as possible. When I finished, I glanced nervously at E. She nods her head encouragingly and says, “You did good.” Thank goodness, I think and relax a little, as we shared a quiet chuckle.

The doctor proceeded to write notes and begin what became two hours worth of tests. After the first 45 minutes, E had to return to work.  Prior to leaving however, looking ever so casual, E asked the doctor his opinion of which nerves were involved in my case.  The young doctor pushed his chair away from the desk and faced her as he “ummed” and “ahhed”.  He eventually began a halting recital of his text books and whilst being put completely on the spot managed to provide an answer that E accepted as reasonable.  “Do you have an interest in eye health?”, her victim asked. “You could say that,” says my friend in an manner one might expect from the cat in and cat and mouse scenario.

Ms. M from Tennant seemed to adopt me after E left and asked if she could follow me through the testing as I was undergoing a rigorous process that enabled her to see a lot of what the team do. At one stage I had to have drops put in my eyes and wait as they did their thing, so we both took a seat in the waiting room and passed the time with talk of the woes of the health sector in Tennant and Alice, the decline of funding and then the joys of hospital stays. It was actually a really pleasant way to spend the time. When the nurse came out to give me the drops, she handed me a tissue and tilted my head back, “Now there are two different sets of drops so just stay like this while I do them.” I complied but when the second lot of drops hit my eyeball, they set off a searing pain. I bucked against the pressure of her hand on my head and stamped my foot in an effort not to punch her. As both the pain and I settled, my new friend was heard to murmur, “That’ll be the nerve ones.” Gee, thanks mate. You could have warned me!

After several tests the student doctor spoke with the Ophthalmologist, who seemingly disbelieving of what he was told, came into the room and repeated a number of tests and measurements. When, after two hours of every eye test known to woman, he finally met with me for the verdict, he explained they wanted to have a solid benchmark for my vision in the event of me having any issues down the track (particularly as I have brain aneurysms). Further, he told me I had regained the peripheral vision lost after surgery and my vision in the right eye was excellent. The only remaining obvious sign of the nerve palsy was in my eyelid, which was still drooping. He believed this would also resolve with time as would the weakness of the eye and the double vision I have with distance vision and when tired. The pain I have upon tearing up is nerve pain and it will hopefully also go away. He then said, “It is the fastest ever recovery from nerve palsy I have ever seen.”

Fastest ever, oh yeah, that’s right. Fastest. Ever. Recovery.

So much for: “Leave the patch on for six months and we’ll see how it’s going”.

Small Milestones Pave The Trail To Recovery

I did it!

I’ve had a recovery breakthrough.

This week I did two pool and one gym rehabilitation sessions.  I have been working up to this for weeks.  It has been a month since my physio set up my pool exercise program and every week since I have been working hard to be well and strong enough to do it twice per week in addition to my Friday gym session.  I finally cracked it.  I have no idea if I’ll be able to do it all again next week but I’ll be sure to give it a go.

Now, if you’ll excuse me – I need to collapse onto my couch…

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.

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’.

We Can Rebuild Her

In amongst the angst of the past weeks, there has still been physical improvement for me. I realise that in my funk I have failed to celebrate these milestones.  I would like to share a few with you, so you know I am still improving despite my lagging emotional state.

When I manage to take myself out into the Alice winter days (beautiful compared to much of the country just now), I am now able to walk 2.5 kms.  The first time I reached this distance, I felt as though I might just die, thankfully that feeling passed.  Walking this distance has become much easier with repeated effort and a friend walking with me last week commented on my speed, saying it was much faster than he anticipated.  It’s always nice to get positive feedback.  I have been tracking my exercise progress with help of an app on my phone and it really helps to see how far and in what time I complete my walks.  Highly recommend using one, if you don’t already.

While still having headaches every day I have a plan with my GP to slowly come off the morphine and then the other pain medicines, once the headaches reduce more in their intensity.  The cocktail of drugs I am on currently is likely causing some side effects like reduced motivation, lethargy, mood issues, food cravings etc., etc.  All the things likely to undermine recovery but without them I would be in debilitation pain, unable to do much of anything, thus I persist with them.

My friends, whom visited this past week, helped so much around the house and provided much needed laughs and company and baked goods (thanks M).  In addition to fixing a chair for me, Mr. Engineer R, also attended to my poor old, battered Mirror Box.  When I had the stroke in 2007, a Psychologist friend read about Mirror Box therapy now being used to help stroke survivors regain hand function.  He proceeded to build me one using a beer carton and it worked a treat.  It didn’t travel well in our move here but I didn’t know how to revive it, but my friend did.  He gave it a complete makeover so it is useable again.  By leaving it sitting on the dining room table, it is easy now for me to just sit and use it a little each day.  This will help settle the finger curling I have and improve my fine motor skills in the left hand.  www.mirrorboxtherapy.com

Rebuilt Mirror Box

Rebuilt Mirror Box

Inner Workings

Inner Workings

 

 

 

 

 

 

In my desperation to find motivation to do my rehab exercises, I scheduled time with my physio to develop a program using their clinical Pilates gym.  I kept the appointment (an achievement in itself) and was put through my new program.  I am deceptively weak.

At first glance, I look fit and healthy – this is a mirage. My physio was surprised at just how weak my left side is but was equally pleased to see that not once in the 45 mins we worked together did I say, “I can’t”.  It was great to find that when someone sets an exercise for me and at the first attempt, I cannot perform it, I can still dig deep, focus, breath, and try again and again and again.  It was monstrously challenging and my balance so bad that during one exercise, I fell off the equipment.  Luckily for me, my physio used to play rugby and caught me around the hips, in something resembling a tackle, before I could hit the ground.

I decided to work with the physio rather than on my own because he is very interested in rehab and this way, I have to attend a physio-supervised class once a week and am accountable to someone.  Next week we are working on my pool program – let’s hope he knows how rescue someone from drowning.

Next up is my eye which is now showing fantastic improvement.  A number of weeks ago I was doing the exercises given me by the Guide Dog mob when it occurred to me, that rather than just doing the exercises three times a day, and wearing the patch the rest of the time, wouldn’t it be better to actually give my eyes time working together?  So I began leaving my eye patch off in the mornings, slowly increasing the time as my eye dictated.  At first, the swelling around my eye was a restriction as it pushes my eyelid further down than usual meaning my distance vision was still double, so I only left my patch off when I was sitting down and not moving about constantly changing the field of view.  This worked well and I was able to start at 30 mins without the patch and gradually increase it as tolerated.  My eye was always the guide in this experiment as it had a definite limit, at which point it would ache badly, my vision would begin to double again and I experienced shooting pains behind and around the eye – time for the patch to go back on.

I continued with this approach over weeks and gradually began making my breakfast without the patch, walking from room to room, slowly getting the eye used to changing fields.  It was a slow start but I persisted, convinced this was the way to ‘get off the patch’.  I have continued to do this, experimenting with different activities and was able to add in an hour at night, watching TV.  I felt nauseas constantly in the first few weeks and there were definitely days when the nausea had me re-patching before any eye pain.

I gradually increased the number of hours each day when I could go without the patch and my eye was getting stronger and stronger.  The swelling at the side of my head (below the temple) also finally began to reduce.

Last Sunday, I decided I’d had enough of wearing the patch and went my first full day without it.  The only time I experienced difficulty was the following day, in a taxi returning from a physio appointment.  I could see out the windscreen and found myself becoming extremely nauseas.  I realised I was having difficulty looking into the distance and spent the rest of the trip looking at my hands in my lap, to avoid vomiting in the taxi.  I refuse to do that sober.

Long story but I have now gone three and a half days without the patch and largely, am managing fine.  The eye still fatigues in the evening and if I stay up too late, my vision begins to deteriorate but this, I am sure, will also improve with time.  Friday morning will see me attending my eye review with the hospital Ophthalmologist.  I will walk in there without the patch; hopefully, I won’t walk into anything or throw up.

Gift of Superpowers

Last week a small, flat parcel arrived at the house.  It had my name on it and being a lover of parcels, I tore into it excitedly.  Inside was a note from my friend, Miss A and a gift, a gift I could never have imagined receiving – my very own super-hero cape.  The note explained how my friend has been making capes for sick kids.  A worthwhile program supporting kids as they go through treatment and recovery from illness or injury.  I’d never heard of it but think it is a lovely idea.  My dear friend thought that having my own cape might help me remember that I “am strong, brave, committed, patient, mindful and loveable.”  I started to cry just now whilst reading that again. The idea of the cape is to remind those of us wearing them, that we are more than our illness or injury and are strong enough to win through the pain to recovery.  What a marvelous gift!

I had to put it on straight away. Pulling it free of its wrappings, I laughed delightedly, seeing it was a beautiful purple (my favourite colour) and had an enormous ‘V’ stitched onto the back.  Putting it around my neck, my hands shook with excitement as I secured the velcro clasp at my throat. Infused by laughter and excitement, I began to twirl around, getting air beneath the cape, lifting it into the air, I ran (or rather slid upon the tiles in my socks) around the house, my mum looking on with amusement and concern.  My spirits were lifted so, that it indeed, seemed to have tapped super powers within me.

Super V's New Cape

Later that day, when Jason arrived home from work, I disappeared into the corridor hurriedly pulling the cape around my shoulders as my mum told him there was something I wanted to show him. Peeking around the corner to be sure he was watching, I leapt into the dining room and took off running around the table with my back towards him, so he could see the whole cape, then took off into the lounge room with my arms extended in mock super hero flight, followed by his joking suggestion that I was an idiot. As I turned, I told him he was jealous and ran as fast as I could manage back to the dining room, holding the cape out as I ‘flew’ around the table and out of the room, having generated enough speed and air flow to hold the cape out, trailing in the wind as I disappeared from view.

Jase was suitably amused by the performance and told me as I returned, panting from the exertion; I should do that five times a day to build my fitness.  I’ve got a super powers cape, I think to myself, why do I need to exercise?

Super V

The cape is displayed proudly, on the back of a chair in the dining room and whenever my gaze falls upon it, I smile and think fondly of both my friend and the silliness wearing it, brings out in me.  It is a treasured possession now and I do wear it around the house, whenever I feel flat or particularly tired.  It makes me feel better.  Stronger.  Loved and supported.  Super!

Thanks Miss A xx

Thanks Miss A xx

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.