I think I can

Have you ever had to start an exercise regime or return to one after a break and found yourself lacking the motivation or inclination to do it? I had a horrible head cold last week and it had me on the couch for a good number of days and feeling sick for a good number more afterwards. In the lead up to this winter bug, I had been exercising nearly every day and was feeling great for it but then I got sick and the momentum broke.

Even after all my years of working at physical recoveries and developing a will to exercise, I still find myself each morning this past week wondering if today will be the day I get back into it – but I haven’t, despite the guilt inspiring self-talk and you know what, that’s normal.

Us humans are such creatures of habit yet we are also highly adaptable, we wouldn’t exist as a species if we were not but some habits (usually the healthiest ones) are harder to get back on track than others after a disruption of our routine.

Despite knowing all the benefits of returning to exercising, I have simply not been ready and thankfully after years of practice, I no longer have a melt-down thinking it’s the end of the world because I’m obviously NEVER going to exercise again because I’m too weak-willed. I am what I like to call a recovering perfectionist and life used to be quite black and white to my mind. I was, as my husband liked to say, an “all or nothing kinda girl”.

So if you also find yourself being internally berated, please try to breathe and take stock. You can do it; it just might take having a plan of attack rather than simply hoping you wake up one day with your exercise-will restored (or newly created).

As I have thought about my current break from exercise, I have tuned in to hear what my body has to say and initially, I was too tired after illness to jump straight back in and now after a longer break I am beginning to experience an increase in physical pain and discomfort. In the past, I let this pain grow to the point where I am spending so much time thinking about it and treating it, that I realise I need to start exercising again so it all settles back down and isn’t a huge part of everyday.

In more recent times, I have learnt to anticipate this ridiculous dance and come at it differently. If you find that you are bemoaning the fact that you haven’t exercised (even just internally) try to catch yourself at that moment and ask yourself, “What can I do now for the next 5 minutes that will count as exercise?” That may not sound like much but if it gets you up off the bench (or couch as it may be), that’s a good thing.

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The last couple of days I began with stretching and although it didn’t take long I felt better in my body and it shut down the nagging negative voice in my head, allowing me to feel pleased that I had at last done something. Yesterday as I was feeling more energetic, I added in one set each of my lower limb rehab exercises. Today I actually got myself to the basement (my exercise space) and did a series of stretching and strengthening exercises. So now when I think about this week I can honestly say I have started back and know I will continue to build back up to my pre-illness levels of exercise.

Obviously for fitter people you can start with a longer exercise interval to get you started but for anyone recovering from illness or injury, you start where you can, be it seated arm and leg exercises, walking laps of your home, stretching, mobilising your joints, climbing the stairs a couple of extra times, or enjoy a stroll in the fresh air. Any movement is better than none. Taken a day and then a week at a time, with realistic incremental increases, you will find yourself developing an exercise routine that suits you, a routine you can be proud of.

Why Write

The idea of writing a blog came to me after I was told I needed brain surgery to clip a growing aneurysm before it could cause me serious harm.  I was scared out of my wits and as I rang my family and friends to break the news, I realised I needed an easier way of keeping everyone up-to-date with how I was doing.  A blog seemed the natural outlet.  What began as a means to keep in touch with people I knew, slowly showed me I had powerful experiences to share, experiences that could be helpful to others.

Having endured and survived a stroke, two brain surgeries and two spinal injuries, I write now to share what I have experienced and learned as a means of helping myself put it all in context and in the sincere hopes it will assist others going through challenging times.
When I go to see a new doctor who has read my file, they always look surprised when they meet me. They expect to see someone with a walking aid, a serious limp or simply someone broken by circumstance. That’s not me.
I have worked hard to recover, done all the rehab I could in order to be able to live my best possible life – and it is this outcome that I want for anyone who has suffered a serious injury or illness.
All too often the medical profession gives up too soon, or insurance doesn’t cover all the treatment we need or our well-meaning loved ones coax us to go easy. So many of us quit too soon and live with limitations we might overcome if things were different.
I’m here as living proof that by taking control of your own life and your recovery, you can set your own meaningful goals, find personalised ways to rehabilitate and recover, so you too can make your best possible recovery, leading to your best possible life. After all, who knows your heart’s desires better than you.
So if you are in need of some company on your journey or know someone who would benefit from knowing they are not alone, follow my journey or share my blog, because together we are stronger and healthier.

Rehab Reverberation

I’ve seen such an improvement in my ability to exercise in the last few months and at six and a half months post-op; I’m feeling remarkably able bodied. The comparison between how I felt after the first craniotomy and this one is telling and it is only now that I truly appreciate how unwell I was for the two years following the first surgery in 2014. I had been reduced to managing my entire life around debilitating head pain and migraines with little relief in sight. Every time I attempted to exercise, I found I could only manage short (10 minutes) sessions and it is impossible to build yourself up with so little exercise tolerance. I would jump on the treadmill and despite not going at it too hard, my shoulder and neck muscles would tighten then pull on my jaw and scalp muscles until the sore spots on my skull (where the metal brackets and screws were) became aggravated, triggering a migraine that would knock me out for up to three days. It got to the point where just thinking about exercising became demoralising, not a good thing for anyone, yet alone someone trying to regain physical strength and function.

Since having the metal removed from my skull, that cycle has mercifully been broken and I have found myself willing and able to exercise again.

So it is that I recently had a review with my rehabilitation physical therapist (that’s what they call them here in the US; at home they are called physiotherapists).   I have been working on strengthening my legs and getting all my muscles groups switching on and working properly. This takes a while as the first few weeks of doing the specified exercises, you are just reconnecting your brain and the muscles and reminding them of how to work, eventually they start to switch on at the right time and then the exercises work on strength and coordination. It’s a process I have been through a few too many times for one lifetime but it has taught me to have patience with the process.

I have also worked on my overall fitness as after the stroke and now two brain surgeries close together, I have struggled to re-achieve cardio fitness, a fact my resting heartbeat has screamed for years, as it never drops under 90 beats per minute (unless I’m meditating).  Fitness has been a much-cherished goal but it has eluded me for a long, long time and I had, in fact, begun to give up hope of ever achieving it. Due to the physical deficits inflicted by the stroke and then brain surgery, I have to work ever day continuing to exercise and practice motor skills I initially lost but have regained. If I stop, it doesn’t take long for the deficits to worsen.

I am nine years out from a brain stem stroke (basal ganglia) and have worked harder than I ever imagined I could to regain as much function as possible, to the point now that on my good days even experienced Neurologists have difficulty picking the signs (my ‘tells’ I call them); those sneaky little weaknesses I can’t conceal. Add two spinal injuries (lumbar) and surgeries and really, it’s a miracle I can even walk.  What can I say? I’m stubborn. I’ve also experienced Jason’s idea of motor- sports-racing wheelchair pushing and I am not doing it again!

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At the recent rehabilitation review, I was pleasantly surprised to see my therapist both impressed and a little shocked at some of my achievements. Okay, so was I but it’s what I’ve been working so hard at for months. I obediently reported my status with the leg exercises I’ve been doing and the exciting fact that I have dramatically increased my treadmill speed, added an incline and am routinely doing 30 minutes a day.   So it was straight into the walking speed test to judge the results of this effort.   Whilst only a short timed walk from one side of the gym to the other at the fastest but safest speed I could manage, the improvement was noticeable immediately. As the therapist compared my new time to the old and looked up the average speed per age numbers, she turned to me with surprise on her face, and said, “You have increased your walking speed significantly and just walked at the average speed for your age group”.  I haven’t been able to do that in decades!   She kindly added, “Given all you have been through, achieving that is remarkable and a sign of the effort you’re putting in”.

I’ve been going through a bit of a rough patch emotionally the past two months but hearing this was like a balm for my worries. Sitting perched on the edge of an exercise table, I felt myself sit a little straighter, a grin slowly worked its way onto my face. We sat, looking at one another for a moment, a sense of shared camaraderie and pride in these achievements; then it was onto the rest of the review. That’s the cycle of rehab: test, find the weaknesses, set exercises, do exercises, review, momentarily celebrate any improvement, and then repeat with more challenging tests and exercises. Victory is often times a very short-lived thing in the rehab gym but gee it feels good.

I Knead This

Today I spent three hours baking. Baking for the simple joy of it. I tackled a Nigella Lawson recipe I have read and re-read, its allure seemingly irresistible but the complexity of it holding me at bay. I have had the cookbook open on the same recipe for two weeks now and I linger over it each time I enter the kitchen, running through the ingredients list and instructions, working through the experience, step by step in my mind, looking for a description of anything too difficult for me to perform, given my current dexterity and strength limitations.

Today it seems was the day. Damn it, I thought, standing facing the cookbook as though it were a living entity I needed to conquer. Nigella has never let me down and the end result does sound delicious – even if it is unpronounceable. I mean what is a schnecken anyway?

My mum taught me to cook, beginning when I was quite young. It was something as a child I insisted I wasn’t able to do. My mother though, was a wonderful baker and whenever my brother and I went to school with some delicious home baked treat in our lunch boxes, we were assured to have options for trade come lunch time. I have a vivid memory of sitting on a small brick fence while several other kids held their lunch boxes open for my inspection. These kids were the ones who had store bought treats (the kind we didn’t have at home) and I ‘ummed’ and ‘ahhed’ over these offerings knowing I could choose anything I wanted because of how good my mum’s baking was.

I like to think to myself now that if I had kids, I would be sending them to school with treats that would also put them at the top of the food barter totem pole.

Basil Brush CookbookMy first ever cookbook was ‘The Basil Brush Cook Book’ which looks and reads entirely like a children’s storybook and I have vague memories of baking something resembling Anzac cookies called, Daddy’s Favourite Cookies. This delightful part of my baking history was restored to me only recently and it sits in its rightful place now with the rest of my cookbooks.  Did you have a copy as well, growing up?

When my confidence in the kitchen was still poor, my mum found another small cookbook that had recipes of only five ingredients and straightforward instructions, as thus I cut my teeth and my confidence grew. I was best known for my banana muffins. Nowadays I cannot imagine not cooking but more so baking; it is in my blood and my heart. I have felt quite disconnected from cooking since coming home from hospital as work in the kitchen takes time, precision, dexterity and usually a lot of bobbing about, all things my head, hand and eyes have not appreciated.

As I have improved though I have returned to baking simple things. A few weeks ago after feeling a bit low and as though chocolate was the only possible cure, I found myself in the pantry gathering up ingredients for a batch of chocolate biscuits (another Nigella recipe) and they were delicious, velvety and rich. Rather unfortunately though they gave me indigestion so horribly that I packaged them up and sent them with Jason to his work place where they were both appreciated and devoured. Much more gratifying than eating them all myself!

What I re-discovered though was the simple joy one can find in seemingly mundane activities.  Baking is my art, my solace and my greatest pleasure and as I studied this morning’s recipe, I decided that if I paced myself, I could end this day with something tangible to show for my efforts as well as something delicious to eat.

As I said earlier, the entire production, yes, production, took three hours and provided me with a couple of physical challenges, moments of “you want me to do what?” a fantastic rehab workout with 10 minutes of dough kneading, and a boost in confidence when the end result was, as promised, looks and smells incredible and are in fact just as Nigella describes. “They are like cinnamon buns, only more so. They are stickier, puffier, gooier and generally more over the top.”  Imagine a hot cinnamon bun covered in syrup made from butter, sugar, maple and golden syrups, with a topping of chopped walnuts. As Nigella says, remove from tray and apply to face.  Admittedly, I had to have a little lie down before that part!

I wanted to write about this I think because I felt whole while baking and got a great sense of satisfaction by producing something. It takes me out of the merry-go-round of rehab for rehab’s sake and whilst something as complex as today’s baking challenge provides me with great rehab, it isn’t its purpose.
Maybe I should do a ‘Julie & Julia’ gig and commit to cooking every recipe in my beat up copy of ‘How to be a domestic goddess – Baking and the art of comfort cooking’.  I don’t think Nigella had recovery from brain surgery in her sights when she wrote it but by god, it is certainly providing me with great comfort and joy.

 

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…

The Results Are In…Rehabilitation Assessments

I have been somewhat vague about the outcome of my assessment in the rehabilitation ward in hospital.  Now that we are home and I have a better idea of what I am dealing with, I feel able to write about it.

The surgery itself appears successful and was without incident, for which I am incredibly grateful.  I have dissolvable stitches rather than staples and Dr. Harding managed to save most of my fringe (which is great given I had no idea the incision would go all the way to my forehead!).

I have not suffered any injury related to a bleed or incident during surgery but the effect of having surgery on my brain has left me with a significant escalation of my prior stroke deficits.  These deficits can recur at times when I am unwell or have been overdoing things and it is easy to understand why they would reappear now.  Admittedly, going in, I wasn’t thinking of this as a potential consequence because there were so many other scarier ones to ponder.  I have however been disappointed to see just how poorly the left side of my body is working. Some of the tests for hand movement produced results similar to the function I had in the first year after the stroke.

It was due to this increase in deficits that I was transferred to the rehabilitation ward.

Once the physiotherapists started getting me up for walks and testing my balance, I quickly became aware that all was not quite as it had been prior to the operation.  After further assessment by the Speech Pathologists and Occupational Therapist, I knew what I was facing.

The entire left side is affected including my face and mouth, affecting speech, chewing and swallowing food. My hand is weaker and the fingers are curling and over-gripping items and when used for a continuous period, they curl up and become useless. My arm needs to be consciously moved first thing in the morning or it just hangs there doing nothing. My leg fatigues easily and I need to concentrate to stop my knee from snapping back in an uncontrolled manner with each step, while the foot turns inward and the toes curl up whenever I attempt something ‘strenuous’.  I am also very sensitive to noise and simply cannot concentrate if a TV is on or there is some other persistent noise.

One deciding factor for Dr. Harding as to which side to approach the aneurysm, was that I already had a stroke affected side thus if any brain damage were to occurred during the op, it would be preferable for it to affect my already affected side; thus the right-sided approach.  This was a sound decision to my mind prior and remains so now.   No damage occurred during surgery but my brain has experienced a trauma and as a result, I have an escalation in the severity of the previous stroke related problems.

Once the physios begin working with me, they also identify a significant issue with balance (umm, actually, I probably did that myself when I realised I couldn’t stand up without nearly falling over!). My brain’s vestibular* system is not working properly (another stroke legacy, as are my proprioception deficits.  I had a brainstem stroke which causes more ‘global’ impacts upon the brain.).  This makes me unsteady on my feet, incredibly dizzy and frequently nauseous. The physios soon work out that they need to be holding a spew bag whenever they have me doing head moving exercises. I will concede it has been amusing to see how fast they can move once I start retching! I tease them thusly, “Ah, Physios, they talk big and like to push people’s limits but hate being vomited on.”

Lastly, I am sent to the Ophthalmologist (eye doctor) to check my vision, as it hasn’t improved as everyone said it would.  Initially my surgeon said the double vision I am experiencing was likely due to bruising to the eye muscles from when they drilled through the skull close by.  At the two-week mark there has been no improvement and I still have to wear a patch over my eye to enable me to see normally. Without the patch, I quickly become disoriented and dizzy whenever I move or look around too much.

The Rehabilitation Physician decides as a precaution to have my eyes looked at because my limited vision is impacting my ability to walk and exercise freely.  One lunch time I am escorted out of the hospital and walk over to the Specialists Centre next door. I sit in the waiting room in a posh building, feeling somewhat self-conscious about the bright pink slippers adorning my feet, but soon forget the slippers as a man near me attempts to whisper to his female companion, “Look, she’s got a big scar on her head.”  Awesome.  I silently urge the eye doc to call me in.

Soon enough I am in the doctor’s office having been taken through some preliminary vision checks and she is now covering and uncovering one eye and studying the movements of my eyes. Without pretense, she tells me I have “What we call, fourth nerve palsy.” She then proceeds to explain in detail what she suspects may have happened and the recovery process.

The fourth nerve is a very thin cranial nerve and it could have been stretched or affected in some way inadvertently during surgery. If this is the case, it could take 4 to 6 month to recover. If it doesn’t recover in that time, they can give me special ‘prism’ glasses to help with the double vision and if at the 12 month mark it is still a problem, they will recommend surgery to fix it.  A bit stunned, I ask her to please write the name of it down for me.

The doctor then schedules a follow-up appointment in 2 days time to fully assess my visual field. These tests show I have lost some of the peripheral vision in the right eye. I will not be allowed to drive until all symptoms have resolved. The Ophthalmologist also now thinks the third and sixth nerves are somewhat compromised and she hopes it is from swelling post-op and that my vision will improve as the swelling resolves.

In the meantime, I have to wear the patch and I can leave it on the right eye as this is the weak eye and trying to force it work too much is counterproductive. She also tells me that it won’t weaken the eye.  Lastly, she tells me I probably will not be able to read for longer than 10 minutes at a time and may want to give it up for a little while, as it may become a source of frustration.  She’s right!

I also then have an assessment with people from the Guide Dog Association arranged by the OT at rehab. They go through elaborate testing that mostly replicates the results of the Ophthalmologist but with less skill and accuracy.  I found the entire thing to be mostly a waste of time. I had been expecting some assistance in mobility and how to navigate the world with half my usual vision but did not receive anything other than, “Have someone with you when you go walking.”  Only later do I learn that the second person present during the assessment was a mobility officer. This person said nothing the entire time they were with me. I’m still a bit cranky about it!  They did however give me exercises to strengthen the eye with the warning they would be challenging and are likely to bring on migraines.

So I came away from all the testing and assessment feeling somewhat deflated. The eye thing took me completely by surprise and when I finally told Jase about it, I burst into tears. I felt overwhelmed again as the list of deficits kept growing but the loss (even temporarily) of my vision was hugely distressing. Jason for his part was rock solid and told me without hesitation that it would be the swelling and once that went away my eye would be back to normal. I clung to his words as though they were a life raft in the sea of my fears. I have since come to believe this for myself as my vision has begun incremental improvements.

I eventually decide whilst still in hospital that I’m not going to worry too much about it all because:  a) I am recovering from brain surgery and have been really unwell; b) I need to put my energy into recovery;  c) I have the opportunity for rehab support; and lastly, d) I have recovered from most of these things before and if I have to, will again.

The extent of my ‘deficits’ may surprise anyone who has seen me in the last few weeks and it reminds me that when I had the stroke, I worked hard to remedy those aspects that were most noticeable and developed the habit of ‘hiding’ my deficits. I became experienced at adapting around them to the point that even health professionals couldn’t tell how greatly impacted I was without undertaking an assessment. This helped me in my recovery to a point and has apparently become an ingrained habit.  Hiding however, hasn’t helped me get the support I need and I have been overlooked in the past for rehab because I appeared to be managing so well. I know I am a perfectionist and an A-type personality and those things give me the drive and determination to succeed but they sometimes also prevent me from acknowledging how much of a load I am carrying. Thus I share this with you now. The surgery went fine but it has left me with some work to do.

 

*The body maintains balance with sensory information from three systems: vision, proprioception (touch sensors in the feet, trunk, and spine) and vestibular system (inner ear). Sensory input from these three systems is integrated and processed by the brainstem. In response, feedback messages are sent to the eyes to help maintain steady vision and to the muscles to help maintain posture and balance.

See more at: http://vestibular.org/node/2#sthash.Swf7v1lF.dpuf

 

 

 

 

Rehab Challenge One

I thought I would offer the opportunity for you to participate/support me in my rehabilitation efforts by sharing some of the exercises in my program.  It is my hope that you will have no difficulty attempting any of these for your self and will wonder what I am on about.  Trust me – these activities are challenging for me and require focus, patience and perseverance.  Should you find an exercise difficult, you may want to continue practicing it to improve you capabilities in that area.

Today’s rehab challenge is: Maintaining Balance With Eyes Closed

Find a safe space to stand in, with something nearby to grab hold of if you lose balance.  Stand on one leg for a count of 30, then swap legs and repeat.  Now do this again but with your eyes closed.  Make sure you have your balance prior to closing your eyes.

If you can do this without wobbling or losing your balance that’s great; if not you might get some balance benefit by practicing this each day for a while.

Rehabilitation

I am quite excited.  Today I was finally assessed by the Rehabilitation Intake Officer and she agreed some rehab would be required, she then moved a few people about and got me a bed today.  The hospital I am in has its own rehab ward so I have just moved from one ward to another but it’s already showing huge potential as they assess how to ensure I will be strong and stable enough to go home.

I have a Rehabilitation Physician overseeing my care and a multidisciplinary rehab team to assess and develop a program for me.  The doctor has blown me away with his kind and thorough assessment and interest in not just my immediate needs but also looking at helping me better manage the legacy of my spinal injuries.  

I had two spinal injuries in my 20’s and early 30’s that left me in debilitating pain & some loss of function.  I was never offered rehab through either hospital where I had my surgeries and had to seek out options on my own.  Same again after a stroke six years ago, we had no health insurance for rehab so I didn’t get any and the hospital stroke unit was closed as it was Christmas holidays, so I was never assessed.  Some of my deficiencies were not diagnosed for over a year!

I have had to fight tooth and nail to get the help I did and I had to coordinate it all (from interstate).  

I now feel as though I’ve been granted some magical wish and may actually get the support I require and the opportunity to work holistically with a professional across each deficiency (or disability).  This could help set me onto an even stronger recovery path and I cannot wait to get started.