Uncomfortably familiar: another day in the operating theatre

“You must be used to it by now!” .. or “Does it get easier each time?”, are common quips I hear in the lead up to surgery.

For the record, it doesn’t get easier.

Today I had the big toe on my right foot fused. I’ve had bigger ops, but it still hurts and there were still nerves!

The familiarity of pre operative processes, and sometimes familiar faces provide a small sense of security and placate some nerves. The reality though, is that each operation is different and has its own complications; each anaesthetic set to ring alarm bells and attempt to fill even the best anesthetic doctor with fear. The challenges I throw at them each time only getting bigger as I get older.

I would have preferred not to endure today’s surgical assault, but if not now then it would be set for another day. In the lead up to surgery the nerves are far outweighed by the pain and discomfort of 2 weeks of bring denied normal meds for the arthritis. It’s always hard to bear.

I declared this week that I would just have to face it. Try not to worry about it each day but take it as it comes. It was a “suck it up and deal with it” kind of talk, but without minimising the fact that the pain would come. The main difference being that I can only face the pain when I’m in the midst of it. Today’s pain was never going to be alleviated by Tuesday’s meltdown. Not that I had a big one, but I hope you get my point. It enabled me to spend a bit more quality time with the kids.

Orthopaedic surgery is very familiar to me. The pain varies and there’s little preparation for the pain that comes. It really is best taken one moment at a time, so it’s often an uncomfortable ride. Hence the “uncomfortably familiar” title.

Now for the recovery road, which we trust will be quicker than the last op 🙂

One day at a time my friends. It’ll be ok in the end.

If you find yourself in the throws of another “thing”, get the info you need, sit with the pain and trust it to tomorrow. You’re needed here, living in the today.

Don’t worry about tomorrow, today has enough worries of its own. (See Matt 6:34)

– Ang 😊

I’ve been here before …

I’ve been here before. Pain unrelenting, rising and falling unpredictably, bringing life to a halt. Flashes of pain strike like lightning to cripple each moment. Stiffness screaming for relief while straining for every inch of movement.

I’ve been here before. Tears flowing down my face at 3am while the rest of the world sleeps. Uncomfortable no matter how I place myself. Pain shouting louder, as it does with most things after midnight. How long will it last this time? When will relief come?

I’ve been here before. The isolation and discomfort. Watching the world go by as life gives way to survival. Bystanders confused as to why these bones don’t bounce like the rest; unaware of the complications of a chronic illness, poor immune system and low bone density. Once again, that which sounds simple is not. There is good reason why I’ve been told not to fall.

I’ve been here before. Disappointment and cancellations. Struggling to let go of expectations of the ‘shoulds’ and ‘have to’s’ of life. Letting down the family yet again. Or at least that how it feels sometimes. Trying desperately hard to keep going where it really counts. Playing games on the bed and reading books. Being available for a cuddle. If I can grimace through the pain.

I’ve been here before. Coping with moments and with days but days turn to weeks and weeks may turn to months. As the mental drain ebbs and flows, the torment of the mind is often greater than the pain. The exhaustion of pain begging for rest that doesn’t come.

I’ve been here before. Whether days, weeks or months, I know the pain will ease. Or at least, I live with hope that life will resume again and rebuilding will take place.

I’ve been here before.  Though I don’t want to be here and it’s hard to endure yet again, I know there is grace enough to withstand even amidst tears.  The sun will rise on a new day and joy will return. The waiting is the hard bit…

Psalm 30:5

Ang xx

“This too shall pass – it might pass like a kidney stone, but it will pass!”
– unknown author

20 weeks and doing the rehab dance…

It’s been 20 weeks since foot surgery.  20 long weeks.  Most of those have been spent non weight bearing, and hoping for a quick recovery when the time for rehab comes. 

I went in for surgery knowing that I could never fully “prepare” for what was to come.  No matter how many surgical procedures I’ve had before,  this one was a dive into unknown and rather scary territory for me.  Noone could tell me what it would be like,  how long recovery would take or how I could manage day to day tasks post operatively. They didn’t mention the struggle I’d endure,  though I was not naive.  The battle in recovery is more often a mental one first.  The physical follows on good time. 

With difficulty and weakness in my hands,  crutches were unrealistic in the early days.  Although, if I had the qualities of the hospital physio I’d be walking 4 months ago.  He seemed to think that I could manage on my own after seeing me struggle to get into a wheelchair from the bed.  Once.  Apparently once is enough to satisfy the powers that be that I no longer need support. Never mind that I  couldn’t stand,  get to the loo,  navigate the room. Or that meds were as yet unsorted. 

Thank God for the advocacy of an anaesthetic doctor.  Though a stranger to me,  he saw me struggling and stepped in to fight behalf.  

Sorry.  I digress… 

The path has been long.  Days become weeks,  weeks turn to months.  Walking is still a dream,  though ìn a good moment I can walk about 20 paces.  There’s no guarantee I’ll be able to do it two days in a row,  though. It seems I’m in a dance.  I wish I knew the pattern.  Some days I can stand for a bit,  others not so much at all.  Some days I can shuffle-walk a little, while other days I regret trying the day before. 

Rehab takes on many forms and may take a long time.  For the mostpart, the pain is a reminder that things are getting better.  “Good pain”, as it were. Sometimes,  however,  the pain is disconcerting and makes me question every move I have made,  and even the decision to go ahead with surgery.  

I know this will pass, and I certainly hope that I will look back on it in a few years time and call it one of the best things I’ve ever done.  

But,  it’s hard and I’m tired.  Really, really tired.  

How much longer?  How much more? 

I guess that’s a question we ask frequently.  How long?  

As long as it takes.  We will endure.  There is grace enough for each day,  if we’ll let it.  If I’ll let it. 

Don’t forget about today. ..

I jumped out of bed,  ready to undertake the usual bathroom visit and face the day.  For around the last 4 months that has involved placing my right knee on a scooter and whizzing off down the hall. It has become quite second nature.  That is,  until today. 

For some reason this morning, I completely forgot that, as much as I want to,  I can’t just “get up and walk”. 

I’m not sure what inspired this rogue behaviour.  Perhaps it’s the two steps I took unaided the other day.  Perhaps it’s my brain wanting the recovery phase to be over.  Perhaps it’s indivative of something that’s common in humanity…. 

How often do we find ourselves wanting to be farther along the track than we are: older,  wiser, stronger, fitter…   Sometimes we want to skip the hard work and get straight to the destination,  albeit an ever changing one.  

We seldom celebrate where we are today, rather glorifying what could be out could have been. There is something beautiful about who you are and where your life is at today. You’re alive, for one.   Take a moment to remember and celebrate life itself.   

Acknowledge your weaknesses.   Let’s just say, forgetting you can’t walk, or denying there’s a struggle isn’t necessarily a good thing. It could cause more pain than it’s worth! 

Aim for more,  but be realistic about where you are.  Sometimes a bit more hard work is needed before you reach your goal.  

What steps do you need to take to reach your goals?  Don’t forget to celebrate where you are today before looking to the future.

You’ve got this!  We’ve got this! 

Run your race well.

Ang xx

One step at a time

I met a guy today  who had an ankle reconstruction 3 or 4 months ago.  He was walking and seemed to be doing well.  He spoke of the struggles of being in the boot and how it was difficult to get started walking again,  particularly with the rearranging of the tendons.

I’m happy for him. He’s been through his journey and come through the other side. It gives me a glimpse of hope that it is possible.  Although the surgery was different to mine,  it presented similar struggles.

But then,  there’s a part of me that grieves.  It’s now been over 16 weeks since I last walked and I’m struggling to keep my head together. I want to be better.  I want to “move on”. I want my independence back!

I think the biggest battle is in my head,  not in my foot.  The foot hurts, for sure,  but the head can take me much farther than my feet ever will. It has the power to make or break each moment.

I took a walk with crutches around 10 days ago and it set me back.  I was crippled in bed for 4 days.  Too much, too soon.  It seems I can’t just “get back into it”: not that I was completely naive.

Facing rehab is hard, especially with little guidance.  The “go at your own pace” usually works for me,  but this time finds me anguishing for more.  The pain in the foot is piercing; the tendons and muscles ache and cramp as though I’ve hiked for hours.  All this for just standing up.

Baby steps, I tell myself.  Get stronger every day.  One day at a time.  One attempt at a time.  It’s slow.  So very slow.

It will get easier.  It will get better.  I will walk again. I know that. But for now,  I’m keeping it real and letting you know that it’s bloody hard. My patience is only a strength to a point! My “bad” day has stretched into a few … and these four walls are driving me nuts.

Ever felt that way?

I’ll try to keep dancing in my head.  We’ll have a “walk again” party soon enough. Until next time … walk on!

 

Ang xx

Behind closed doors … what no one sees

Flares come and go. This one is etched eternally in my heart.

Living on my own, barely able to move; I lay on the bed. The pain, excruciating and debilitating, breathed heavily through my bones and joints. Stiffness draped over me like a blanket of lead, far too heavy to lift.

My hands, elbows, neck and shoulders all simultaneously locked and weakened as though they’d spent days on end in tight bonds, rendering them weak, swollen and useless.

Every movement needed to be measured. Getting up was beyond a chore and getting dressed became an option far too difficult to manage. Each step an awkward shuffle and stumble as pain pierced each step. Calculated risk, measured only by necessity.

You need to eat. 

I dragged myself off the bed with every ounce of my will power and shuffled to the kitchen. I paused: thankful that I’d made it this far, but internally hurt by how much effort it took to get there.

You can do this.

I took a deep breath and grimaced as I opened the cupboard door. The cereal was around head height. Visible. Within reach, yet may as well have been on mars. I tried so hard to reach. I grimaced, I breathed deeply. I tried swinging my arms to gain momentum.

I’ve been here before. It’s ok. It will pass. 

Yet each moment that passed brought a new level of frustration.
How is it that something as simple as making breakfast became the undoing of me?

I stood there and caved. Something deep inside me cracked and I cried out:
“How could anyone ever love this? Who would want to see this? And, why would they?” 

I was unable to get changed, unable to wash my hair, unable to move freely … and now I couldn’t even get myself a bowl of cereal. The words changed from courage to despair:

No one could ever love this.
No one could put up with this.
You can’t even …
It’s too much …
You’re too much … 

I stood and stared blankly at the cupboard. Overwhelmed with the heaviness of it all, I cried. I let out tears of pain and frustration that my body was yet again letting me down, and that I was seemingly on my own in this.

The weight of struggle rested behind the closed doors of my little house, hidden from the world: the world who couldn’t handle me at that point. The world only my parents knew of. The world I felt alone in.

Returning to my bed, the reality of my thoughts grieved me. It sat heavy on my heart and I poured out my soul on my pillow.

No one knows exactly what goes on behind closed doors. People think I’m strong, but that’s far from the truth. If they knew how hard it gets, how crippled these moments are … what then? How quickly would they run? Who would dare enter these walls?

The reality is hard to live with. Pain is ugly, messy and complicated.

No one sees this.
What is the point of it?
How can this ever be used for good?

I died a little that day. I died to the idea that I could be loved by someone. I was left with a renewed understanding that I alone live in this body. And that means everything it does or doesn’t do: I have to live with that. I couldn’t expect someone to come into my world. Why would they choose to be a part of that?

Thank God for resurrection.

You see, I know that I am more than the pain in my body. I am more than flesh and bone. This heart, this life, this being is simply more. It has more to give, more to offer and more to love. Confined by a body is different to being defined by it. Should someone enter this world, may it be a blessing both ways.

Yes, it’s hard. Yes, it sucks.
No, you’re not alone.
Yes, you’re worth it.
And … you can … you really, really can! 

Who would enter my world?  Your world?   Perhaps those who seek after truth and beauty, who look beyond the external and see what lie beneath.

We all have our pains, and there is hope in it.  In it, alongside it and all over it. There is always hope. There is a place of grace, rest and mercy.

Dear heart, stand up. If not physically, then metaphorically. Take heart and know that you really are loved and lovable.

And for those who come near, may you find the courage to sit and stay.
Stay with me. Stay with us. Together we are stronger.

May we all never be alone again.

Peace and rest to you,
Ang xx

Psalm 116:1 “I love the Lord, for he heard my voice; he heard my cry for mercy”

 

 

 

 

 

12 weeks on… still going…

Just a quick one to say that it’s now been 12 weeks since I had a triple foot fusion of my right hindfoot. 

12 weeks of no weight bearing. 2 more to go,  then rehab.  No weight bearing is hard.  Very hard. 

The first 6 weeks were made more difficult by a restriction on normal arthritis meds.  Prevent clots, but increase pain and stiffness.  Fun times… 

Mobility has been difficult,  but a knee walker has been a saving grace.  

The wounds are healing well and I’m scared but looking forward to learning to walk and regaining strength.  It too will take a lot of time and effort. It’ll be “good” pain!  I trust it will be worth it.

When fear comes I remind myself that we’ve been through so much before and always found a way to manage. 

We cope and fine ways to cope.  Sometimes in the solitude,  sometimes through others.  

May there be blessings in the journey.  

His grace is sufficient for me… and you! 

Talk soon xx

The power of a push!

 

I wanted to tell him off for being late, but how could I when I saw what he was doing?

He would push me up the hill on my bike after school most days, until we reached a point where I could ride off.

It was fun. It was helpful. It certainly beat walking the bike.

Our primary school was on a hill. There was a dirt track that ran along the side of the school uphill to the road that would lead home.  I preferred to ride to school than walk once I was ‘old enough’. (I’ve always been able to ride a bike further than I can walk). It was quicker and easier. Except for that hill.

As the bell rang at school we’d throw our bags on our back and head home. I’d collect my bike and head to the gate, often straddling the bike but essentially walking it! I’d hear footsteps and a call to “Hang on!” as his hands pushed against my back. Up the hill we’d go til I gained enough momentum to peddle away. And that was it!  “Thanks! See you tomorrow!”

I remember being thankful at the time, but now as I look back I see a selfless and servant heart. Years later his mum shared with me that she would get frustrated because he took so long to get to the car, but when she saw him helping me she couldn’t tell him off! For that I am thankful.

This same friend helped me hobble to class in high school when my ankles gave way and helped me to stand on a trampoline for the first time as an adult to see if I could jump on it. For the record, I can’t. But, it was an amazing experience to try.

There’s something incredible and liberating about people who help you to “be” and experience life. Sometimes it’s the small things that make a huge difference. Without them life would be dull. This is only one story among many.

Don’t underestimate the power of helping someone to experience life – especially the things that you may take for granted. And never give up – some things that seem difficult or impossible may in fact be possible, with a little (or a lot of) help from a friend!

Breathing life into someone may be as simple as holding their hand to help them stand…

For those that call me out, lend a hand and draw me into life experiences – thank you for enriching my world.

 

These small hands …

“These hands are beautiful and precious. With them you will do much good. You will do many great things that honour God.  God will use them to bring healing.” 

 – a dear friend xx

As my friend spoke these words I was simultaneously brought to tears and gripped with scorn. Yeah, right. Have you seen them. They’re pretty useless.

I hated them. I hated everything about them. I’d do anything to hide them.

My hands are a source of great pain and a visual reminder of a crippling disease. Small. Deformed. Crippled. Weak. Gumby…. you name it. Though surgical intervention has reduced the pain and allowed some function, they still remind me that not all is well in my body.

I look back at photos of myself at the age of 7 or 8 and tears roll down my face. I’m drawn to the small, swollen hands, on the brink of falling apart. Joints weakened by arthritis and bones so small they almost disappear. I see the beginning of the deformities. The memories are perhaps worse than the reality was at the time. I knew no different then. I didn’t know what was coming, nor the impact it would have.

I remember the joints dislocating (subluxing) and each time it becoming more crippling. They crippled quickly as a child and attempts were made to save the joints through ongoing splinting, occupational and physio therapy. But dislocations took time; most of the finger joints dislocating completely while I was in high school.

Sometimes I would sit on the bus in silent tears rubbing my joints, begging them to stay in alignment, knowing that they were mere days away from ‘falling off’. The synovial fluid would cause swelling, the tendons would slip and the bones would slip past the joint. Occasionally I could pull them back into alignment, but never for long. Splints were useless at this point. All I could do was wait to come of age for surgical intervention, and watch the rest of the joints ‘go’, one by one over the following decade until there was hardly a bone in its ‘rightful’ place.

The wrists did the same thing – the left one was particularly spectacular. The meta carpal bones essentially disintegrated and my hand all but fell off my wrist – the ulna was on top of my hand. The result is 2 fused wrists: one at 19 and the other at 23 (because in my pride I chose pain because I refused to be a 21  year old with 2 fused wrists).

After all the operations – Palm down, 2014

Palm up, 2014

My hands held me back. Grip failed frequently, resulting in embarrassments as drinks fell into my lap without any recognition from my brain as to what had happened. Piano keys now tapped one at a time, fingers mashing keyboards and clapping something representative of a monkey wearing mittens.

My 7 year old has bigger hands than me. My 4 year old is catching up!

My friend held my hands and spoke: “These hands are beautiful and precious. With them you will do much good. You will do many great things that honour God.  God will use them to bring healing.”   As she drew attention to my hands there were tears of doubt and pain. Deep hurts reflective of years of splinting, stiffness, stretching,  physical therapy, torture … Could they really be useful or of value. Could I be useful or of value? Ouch!

Interesting, isn’t it?! Somehow these words unlocked a world of pain that revealed something that was holding me back. Something I never thought to be ‘true’. I try not to let my body dictate who I am – I have known for a long time that I am far more than this vessel. I rebel against the system and make every effort to prove people wrong (more on that later). But perhaps there’s more; something so deep it went undetected…  perhaps there’s a sense of shame?

Could there be healing from these hands?  Could they hold the keys to freedom? What if these hands can reflect the heart – the heart that screams for grace and mercy. The heart that screams for peace and healing in this broken world.

On reflection, these are hands that:

• rub my children’s backs to connect and comfort
• holds their hands across the street to keep them safe
• prepares food to nourish
• bakes to bless
• gently rest on a friend’s shoulder to comfort
• write to bring hope

Somehow  these hands continue to function despite the pain, smallness, stiffness and deformity.

Will I ever be unashamed of the hands that have not seen healing? I don’t know, but perhaps in realising that though broken they are of value, there is hope.

My hands are small I know
But they’re not yours, they are my own
– Jewel, “Hands”

 

Disabled Parking rage… passive aggressive style

Warning: I’m judgmental and slightly obnoxious in this post…
I experienced road rage for the first time in years today. I was a passenger and we had a 1030am appointment at the clinic. We headed towards the row of disabled parks and were relieved to see a gentleman arrive at his vehicle, place something in his boot and head to the driver’s seat.

For those who have a disability parking permit, you’ve probably experienced, or at least heard of the abuse that those parking on such spaces have received. I have had a fair share of abuse hurled my way: “What are you parking there for?”, “Can’t you read? You need a sticker to park there”, “where’s your grandma?”, “where’s your wheelchair? You’ve got legs…”, “You’ve got no right to park there, you should be ashamed of yourself”… The list goes on. Each time there is a ‘look’ and sometimes a scary level of aggression. If you’ve experienced the ‘look’, you’ll know what I mean. It varies between scorn, disgust and that look that people get when they think they’re better than you and know everything. Whatever that’s called (my vocabulary is clearly not as high as my frustration tonight). I won’t even get started on those that park without having one or use someone else’s because it’s easier.

I really don’t like to judge people, but this guy looked at us indicating to go into his space and gave us the ‘look’. Somehow I think we didn’t fit his picture of who needed that space and he took it upon himself to protect it.

We waited patiently, though my stress levels rose as I watched him. I know that it can take a while to get everything organised before exiting a park, especially when there’s a physical disability involved. Sometimes I’m embarrassed at how long I can take to clear out of a space. But we waited. And watched. I watched him get in his car and close the door. So far so good. About a minute later he reached over towards the glove box and pulled out a cloth. He then began to clean the inside of his car. The dash, the steering wheel, the windscreen … Too many minutes passed and in the absence of other parks I needed to get to the appointment. So we pulled up just ahead (but still behind him as there was limited space) and spent a few minutes getting me and my scooter out of the vehicle. At that point my husband wanted to take as much time as possible in some kind of passive aggressive response to make him wait longer still. Fight fire with fire? Not that I advocate for anything like that, but I was a bit too flustered to argue.

I scooted past him without looking at him. If I’m right about his motives I hope he grew a conscience after seeing me. Not that it should matter, but hey.

I admit that I may have it all wrong as it is not safe to make assumptions. This time the guy had a disabled permit… Maybe that’s what makes it harder to swallow… But it triggered my frustration at past abuse and raises concerns for me about how people treat each other.