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“Be confident with the the guardianship you have over your own life”

A few nights ago, when I got out of bed to go to the bathroom, my right leg wouldn’t take my weight. It kept collapsing underneath me. For some reason the quad had suddenly, very suddenly, no warning, gone on vacation.

This wasn’t the first time. It happened about six months ago too. Except then it was much, much worse. My right knee went into withdrawal reflex every time I tried to put my foot on the ground. That time I had to go into hospital for a few days because I needed 24/7 care. Nobody could understand what had happened or could predict what might happen next. I worked hard at staying calm and balancing the fear of permanent immobility with strategies for enjoying the things I’d still be able to do, as well as doing everything I could to restore function to my right leg.

While ACC helped me prepare for the physical changes by getting me equipment I would need to live independently, I quietly and determinedly set about identifying any stretches or movement that reduced the withdrawal reflex. Slowly but surely I worked on straightening my leg while I was sitting or lying on the hospital bed. Then I worked on keeping my leg straight while I tried to stand on it, even if only for a few seconds. Over a couple of days I went from standing on my leg for a few seconds while taking most of my weight on a walking frame, to walking fifty metres using crutches. I stretched my calf muscles, hamstrings, adductors, hip flexors, any muscle group that might be triggering the withdrawal reflex, any muscle group that might be weakening my quad.

Over the last six months I have devoted hours every day to stretches, strengthening exercises and reclaiming the walking stamina and endurance I had previously. I am determined to walk and maintain my mobility but I also have to acknowledge that my mobility could be compromised at any unpredictable moment. I sought counselling to help me manage this. I was offered a gem “Be confident with the guardianship you have over your own life”

Again and again, I return to this mantra. But do I really have the emotional fortitude to do this on my own? I know that on a practical level, there are things that others can do for me or with me. Like it or not, emotionally I’m on my own. This is my emotional journey. It’s difficult for others to understand the fear I have of losing whatever mobility I have gained. The difference between having to use a wheelchair and choosing to use a wheelchair is infinite.

Perhaps the greatest help others can offer is to understand how my physical decline impacts on my ability to get around outside my own home. Knowing that I can unexpectedly and without warning lose my mobility makes staying with or visiting other people really challenging Few people I know have toilets that are accessible to wheelchairs, or have entrances without steps, or beds that I can transfer from into a wheelchair, assuming I have the wheelchair with me (if I lose my mobility while I’m using crutches, I can crawl, that’s it. I need someone to lift me onto the toilet, the bed …) So I need to have a strategy in place to deal with this, and people around me who understand the complexities of personal cares – toileting especially.

However, I’m not completely on my own. Initially I thought that I had to provide all the answers for logistical issues. I’ve learned that I can raise an issue or a risk, discuss it with others and work together. I don’t have to solve on my own all the problems that come with a sudden loss of mobility.

Maintaining social networks becomes more difficult with physical barriers, time spent preventing contractures and pressure sores, and managing pain and spasm from reduced movement, and fatigue. It can be hard maintaining friendships and relationships. I’m not withdrawing, I’m struggling, so others will have to carry more of the work required to keep friendships going. Understand that I’ll be more reactive, rather than proactive.

Quality of life can be reduced. One of my greatest pleasures is independently wheeling down to the local beach then walking down the ramp and onto the sand. The beach is not accessible by wheelchair. I’m still working on that, but for now, I take every opportunity to get outside. I may seem unwilling to join in activities, understand that I am prioritising the things that make my heart sing, especially the things that I may not be able to do with less mobility.

So what happened when my mobility was again threatened?

It was a distressing and frightening experience.

But having beaten it once, and having learnt from that experience I patiently went to work. I had everything to gain and nothing to lose if I spent the rest of the night getting movement back.

It took about an hour and a half of progressive stretching to reach a point where I could stand on my right leg. I used a walking frame to take most of my weight then gradually increased the pressure on my right leg. I asked my husband to massage the quad, trying to stimulate the nerves to that crucial muscle. I sat from time to time so I could recruit my quad in a seated position then again tried to stimulate it in standing. I stretched my long calf muscle, another trick I’ve learned is when I stretch that muscle the quad will try to work. I did some squats to work the quad. Then I walked barefoot round the house using the walking frame. As my quad became more reliable I switched to crutches. Then I put on my shoes to walk with the Odstock.

By far the hardest thing to do though, was to go back to bed – if I slept would my leg again fail me when I woke? Eventually I reasoned that I couldn’t stand for the rest of my life, doh! At some point you just have to surrender to common sense.

Same logic when it came to getting out of bed… I wanted to stay in there in case there was a repeat of what happened at midnight. Stupid right? Just as I’m not going to spend the rest of my life standing, I’m not going to spend the rest of my life in bed.

So I tell myself, be happy, don’t worry; I can’t stop the physical decline, I can’t predict it, but I have guardianship over my own life.

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This is an article by one of my favourite writers, Victoria Dougherty.

One of the themes is growth through adversity … read on!

 

We need to talk about pain more.

Cold

pain 5Some years ago I attended an Easter brunch at some friends of my parents. It was a warm, wonderful occasion filled with people I’d known all my life, and who, through their example, had somehow always managed to make a better person out of me.

I was seated next to a young man named Tim, who I hadn’t seen since he was yay-high – cute and rambunctious, covered in some form of dirt from head to toe like most little boys. But by the time this Easter brunch rolled around, Tim was a man in every sense of the word – a U.S. Marine, in fact, who had recently returned from a tour in Iraq. A husband.

It is the tradition in Tim’s family to do military service before embarking on a career in law or medicine. In Tim’s case, he’d been planning to start law school in the fall…

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Future Proofing

Futureproofing – Part 1
I began writing these posts for my children. I wanted to share with them the things that we weren’t likely to talk about over dinner, or at family gatherings or just hanging out. I wanted to tell them how special they are to me, how essential to who I am, how they have shaped my life and to thank them for letting me into their lives as they grow and change.

So much has happened in the five years that I started writing. Weddings and grandchildren; better management of my pain and continued improvements in my walking and gait; shifting to a home near a beach in preparation for my husband’s looming retirement. But most of all, I have discovered a growing determination to look time squarely in the eye and to fight its ravages – I will not go gently “into that good night”.*

Futureproofing has been on my mind for a couple of years as I get older. Where to retire and when to relocate? How to support family, and how to ensure never to become a burden in any way to family? How to maintain my upper body strength and minimise muscle and joint disintegration? How to keep improving my walking gait? What does quality of life mean to me? What will make my heart sing?To sum up, how to live a full and satisfying and even exciting life?

“Old age should burn and rave at close of day;
Rage, rage against the dying of the light.” – Dylan Thomas*

First thing to tackle has been to find a place where I can take my stand. No more coping with Wellington’s cold winters. I didn’t think I could manage one more. The decision to move was difficult. We have a son and daughter law with two little ones in Wellington, a daughter and son in law with a toddler and another one on the way, and a son and daughter in law in Auckland.

What was important in deciding where to live? It had to have warm summers, be near a beach, be accessible to family, a place to tempt grandchildren, a place to welcome and draw people to, a place to retire to. And, we realised, a place that my husband could work from until he retired. I wasn’t worried about proximity to medical services. My instincts tell me not to make it a problem. It’s on my radar, but barely.

Our kids were right to advise us not to decide to live somewhere because it was close to one or other of them – the world is mobile and our kids may not stay in one place. We have moved our kids backwards and forwards between cities as work dictated.

So here we are on the Hibiscus Coast. Where people come on holiday. Thirty minutes from the CBD (don’t drive in peak hour traffic) yet a world away in culture and stress… And house prices. We up-sized, got a better quality house, more land and we are 600 metres from a fabulous and mostly empty beach. For pretty much the same price as the home we left in Wellington.

Oh, how I love this beach! In summer I wheel down in my wheelchair with my crutches clipped on twice a day. At low tide so I can walk the length of the beach. That’s my rehab and therapy. At other times I wheel down then walk into the surf and just stand there as the waves sweep over my thighs and higher. My heart sings! The locals have come to know that when they see my wheelchair at the top of the boat ramp I am somewhere on the beach.

The locals, my neighbours, are all here for the same reason we are. They love the beach. All summer long people wander along the roads that lead down to the beach wearing only their swimming togs with a beach towel slung over their neck, or round their waist. Some carry a body board or surf board or paddle board. My husband is not alone in pulling his kayak on its trolley along the 600 metres to the beach. People of all ages and all unselfconscious. Oldies with their wrinkled saggy bodies, teenage boys with rippling abs, girls in bikinis, men with their bellies hanging over their board shorts, walking in groups or singly. Greetings and waves to friends and neighbours. It’s wonderful. Acceptance all round.

It’s like going back in time. We know our neighbours. I call them if I need something while my husband is away. They ask me for favours. I have good friends here.

My daughter and son in law come here in the weekend to recharge. We play with our grand daughter. She loves it here too. Our neighbour lets us use her swimming pool. Our grand daughter goes down the road to the play area either sitting on my lap in the wheelchair or pushing herself on her trike, speeding down the slope.

When our son’s family stays with us everyone piles in too, bodies in every room.

As I write this I can hear the ocean, my friend’s dog barking, some birds singing. I can see the palm fronds rippling in the slightest of breezes, huge hibiscus blossoms, tropical greenery. I can feel the tiny edge to the temperature that tells me that Autumn is coming.

This place is everything I wanted as I contemplate a future to look forward to.

Five days after carpel tunnel surgery I have:

Walked along the waterfront using a gutter frame, twice

Transferred independently from the bed to to wheelchair and back

Transferred independently from the wheelchair to the gutter frame and back

Transferred from the chair to the floor for a bit of crawling

Stood up from the wheelchair to stand up at the bathroom vanity

Emptied the leg bag myself

Done standing exercise ….

Plus all the other things that anybody can do after carpel tunnel surgery:

Used a fork and spoon easily

Tied my shoelaces

Taken off my socks and shoes

Placed the Odstock electrodes after having retrieved them from their ziplock and zipped bag, then remove them and put them away

Squeezed and pinched my fingers and thumbs

Made a fist … And heaps of other things like cleaning my teeth, wiping my face, combing my hair, putting on moisturiser

Every day everything is stronger, but there are a few goals that will be a little way off, like being able to put my all weight down through my hands on to the crutch handles – that will likely be the final challenge!

Whew! So far, so much better than I had expected!

My surgeon didn’t refer me to a hand physiotherapist or give me exercise to do after the surgery so I found some good web sites to help me.

A Christmas Calligram – 2012

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Just over a week ago our son married a wonderful young woman.

She is witty and wise, has a wonderful laugh, a radiant smile that brings joy to others, is caring and giving, inclusive, and loves my son. It may seem odd, but one of the things I love most about her is that she loves her mother. Family is important to her. Of all the gifts she offers my son, this is one of the greatest.

Their vows to each included that they would love each other through sickness and good health, and they mean it. Both have experienced trauma in their families and both know how difficult it can be to keep going forward together. It can be easy when things go well, but, as they alluded to in their vows, times together can be mundane, can be frustrating, can be sad, troubling, difficult. But where there is real commitment, love can be uplifting, the source of goodness and fulfilment.

This couple knows that. I love them for this, and for what they bring to each other.

I watched my son as his bride walked towards him. His face was lit up with happiness and joy and excitement. She was glowing and so very happy to be walking to him, about to marry their lives together.

We say that all we want for our children is to be happy.

This is a very happy couple. I thank my daughter in law and her family for bringing so much to this marriage.

Our Family Grows

Just a few weeks ago our family celebrated something most wonderful and momentous. (Oddly, that which is so very special to us, happens in the world four times every second of every day!)

My daughter in law and my son have a daughter.

My daughter in law has done all the work so far, but for both of them their journey is beginning now.

After a difficult pregnancy, my daughter in law has fallen in love with her daughter. Nothing prepared me for seeing my son fall in love with her too. He has always been good with young children, and when he was little he and his brother played with and cared for their much younger sister. Still, I am proud of the way he takes care of and loves his daughter.

Unlike I was, my daughter in law is expecting sleepless nights, tortured days, exhaustion, having to deal with the unknown. Women are now perhaps more open in talking about the times of frustration and despair as well as the times of utter joy and ecstasy when holding a contented baby. Still, nothing really prepares us for the roller coaster ride of being a new parent. The highs, the lows, the mundane. Women also have to cope with a new identity, one that describes us primarily as a mother rather than a lawyer, accountant, manager ….

But the greatest, most responsible, most fulfilling, most awe filled, most wonder filled work of all, is that of being a parent.

I thank my son and his wife for bringing into the world a delightful little person, and for including me in their lives. And I thank my daughter in law and her parents for including us.Our families are forever linked.