The Spinal Surgery Recovery Road

I’m a week post L4/L5 laminectomy and decompression surgery. I’ve been home from hospital for 5 days and the road to recovery has begun. Well sort of. I really feel like I’m still in survival mode.

My Surgeon tells me we did the right thing proceeding with this surgery. My spinal cord was severely compressed and my legs are already feeling stronger and more stable than they were when standing and walking with aids.

A good early sign. The pain in my lumbar surgical site is quite another story. The pain is excruciating and I’m in for a long 3 months of healing, hopefully with no complications.

It’s still a little too early to say if the surgery has been a complete success. My Surgeon is being cautious and so am I. My body has a habit of behaving badly or surprising us with the most unexpected reactions, so we are right to be cautious.

Recovery Is A Process

One thing I have learned over the years is that recoveries can’t be hurried.  They need to respected. Time needs to be given and all precautions and post surgical instructions must be adhered to.

So from a medical theory perspective, a recovery sounds straight forward and very practical.

There is another side to the medical recovery process. It’s the personal effect major surgery has on your life, especially when you’ve had multiple surgeries over a short space of time.

The fatigue of constant pain from recoveries and often complications, seems never ending. I’m again struggling through the effects of waning General Anaesthetic and strong pain killers. Stomach pain, colostomy complications, lack of sleep plus sitting, standing, walking, bending and daily task restrictions, can really make the recovery process ahead a cumbersome time.

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Reflecting Through Recovery

Surgical recovery restrictions can give us the gift of time. We can choose to be frustrated and bitter about facing yet another recovery period, or we can choose to use the time wisely.

I’m choosing to take time to reflect, in the hope of discovering what my path for the best future possible will look like.

Reflection allows me to grieve the loss of my ability to run, to even walk normally, to shop, to go to church, to participate in life with the energy and passion I have always enjoyed.

I don’t ask why me, I don’t feel sorry for myself.

I’m tired of being in pain but I know I’m not alone in feeling this way. I know others face similar or worse battles. Others journey with me.

Strength In Sharing

The strength of my online support forum members, coming together and openly sharing their stories, clinging to the fact that they are not alone, is heart warming.

I also administer an online forum for parents who have children with Juvenile Idiopathic Arthritis. The courage of these parents struggling with the decision to either medicate their young children with toxic chemotherapy drugs, or take the risk of them having such severe damage to their joints they will be crippled for life, is both inspiring and excruciating to read.

Underlying all the individual stories shared in these forums, is a determination and strength never to give up but to make the most of every day. To accept the pain for what it is while choosing to find joy in the simple things of life. To look at life as a new adventure. To fight for some kind of quality in each day.

All grieving what is lost while also looking forward to finding new ways to live, new activities to enjoy and embracing new friendships formed out of adversity.

The Next Three Months

My recovery road is going to feel long. I’m no doubt going to have moments of wondering was the surgery worth it. I had one of those today and I haven’t even left hospital yet! It’s normal to have those feelings and I know to deny them will hinder my recovery.

With Gods grace, I’m going to ensure I focus on respecting this recovery period so I have the best opportunity of living a full and precious life.

Taking time to reflect is so important and I believe it’s the most important part of the healing process. It renews strength, resolve, courage and new dreams and hopes never thought possible, can be forged.

Who knows what new adventures I may be inspired to pursue on my road to recovery.

Take care

Sam xx

Because of the Lord’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.

Lamentations 3:22-23 (NIV)

 

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

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WEGO Health Award 2018 Nominee

 

A Leap Too Far

A week ago I posted a picture on Facebook of my first outing on my mobility scooter to our local Westfield Shopping Centre. It was a momentous occasion. The adrenalin of being able to move more than 50 metres kicked in and before we knew it 90 minutes had passed.

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It was a lovely afternoon and I don’t regret it for a minute. So many friends and family who saw my post on Facebook were excited to see me out and about. Expectations that this was a whole new beginning for me were expressed in loving comments. I so appreciated every one of those comments and the spirit in which they were written.

The next day I felt reasonably ok. I think the adrenalin of having achieved this huge milestone was still running through my veins. I even managed to colour my hair the following afternoon, although once I started I began to realise I was probably pushing things just a little.😕

The 2nd day after my outing was a huge wakeup call. I couldn’t move. My legs were in so much pain it was as if they had re-broken. The muscles were so fatigued they couldn’t support my weight. My whole body felt like it had gained 100kgs and the inflammation throughout my entire body was rampant.

I had taken a leap too far. My own expectations, having purchased the mobility scooter and the expectations of others who were willing me to be more active and mobile and have something of a more “normal” life, were driving me to push beyond what my disease will allow.

It’s a week since that outing & I have been more crippled over the past 7 days than I have been over the past 2 years. My quality of life at home has been terrible. Before pushing myself to get out and about on the scooter, I was able to enjoy short car trips to local cafes or to sit in the carpark and take in the beautiful views of the Bay. I was able to potter happily around my home independently, cleaning in small bursts, sitting in the garden, writing at my desk, chatting on the phone & most importantly providing support to the members of my online forum.

I’ve tried to continue to do some of that over the past 7 days but it has been so limited and I am still not able to get the pain under control.

It has all been a leap too far.

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So what does this all mean for my future adventures on the scooter? It means lowering my expectations. It means not feeling guilty if I can’t get out on the scooter at regular intervals. It means being content to use it, not necessarily as a leisure item but as a transport means, for important or special outings that require me to get to from A to B when I can’t make the distance on crutches.

My bone disease attacks my muscles as well as my bones. It causes my bones to die but it also causes muscular atrophy and Avascular Necrosis. The vibrations of the scooter unfortunately aggravate these issues. In conjunction with an Occupational Therapist, we have made as many adjustments as possible to the scooter to help alleviate these consequences but we all knew we couldn’t eradicate them entirely.

Living with a chronic disease well, means living with realistic expectations. I will always test my limits…..that’s just who I am and what I’ve always done no matter what life has thrown at me. However, I also have learned to be content with whatever state I find myself in.

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I will get back on the horse, so to speak, but not tomorrow or the next day or maybe not even this month & that’s ok. I will also make sure that my next adventure on my scooter will be no longer than 30mins and we will carefully assess how I fair afterwards. Slow and steady will be my approach.

My “normal” is so very different from what others can or can’t do. It’s unique to me but then that really is the case for everyone. After all what is “normal”?

What is important is being happy and having the best quality of life possible. I have that in spades & if I’m not posting photos on Facebook of me out and about, rest assured I am happily content at home doing the things I love, things that are within my limits.

Take care

Sam xx

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

 

I’m also a Contributor at The Mighty

 

 

Life isn’t always straight forward

Life isn’t always straight forward. Not really a newsflash to say that I know!

24 months ago I sat in pain with 2 broken legs, recovering from 2 major surgeries 8 weeks apart. I was facing a future filled with so many “unknown” elements.

At that moment, “Life isn’t straight forward”, is what came to mind!

Nothing much has changed today.  Life is still not straight forward. It will forever be a winding path.

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Dead Bones

I was told recently that my bone biopsy results revealed “dead bone”.

That’s it.

No further explanation required as my rare bone disease remains a mystery to us all. We don’t know what has caused it or even exactly what it is. It is a disease if it’s own kind. Idiopathic in nature.

All we do know is that I have hardly any new bone turnover and that us causing my bones to become incredibly dense and unhealthy…..dead in fact!

The Right Decision

A sigh of relief was audible from my Surgeon as we reviewed the biopsy results at my post surgery appointment.

He can now sleep at night. He knows we both made the right decision to insert a rod in my right femur. It was definitely ready to break spontaneously, with no warning,  just like the left leg did 24 months prior.

The biopsy results confirmed that, as did the femur stress fracture he found during surgery.

I am relieved too that we prevented an emergency situation but I am also left feeling frustrated that my body won’t behave. It doesn’t fit the mould. It refuses to slot nicely into a diagnostic category. It teases us with snippets of clues and then spectacularly, physically, breaks down in a way we didn’t see coming.

My Specialists, in an effort to be encouraging, share test results with me and say;

“Good news, it’s not such and such”

When Good News Is Bad News

I explain while it is good I don’t have a blood cancer or some other disease that has been suspected along the way, being told I have a rare bone disease, is not great.

Something that has not yet been given a name and is likely a genetic deformity, an idiopathic disease with an unknown prognosis, is actually worse than being told I have something known by the medical profession.

One of my Specialist asked me why is that worse? She wanted to understand why I would want to know that I have a known disease that could be terminal or that has no hope of treatment?

Answers Are Always Nice

My answer?

“Answers are aways nice”

I explained I need to know exactly what I’m dealing with. I want to know the prognosis. We have no idea the path my disease will take. We know it’s progressive in nature but we don’t know how quickly and what that progression will involve.

We have already been surprised by a scary pathological femur fracture and  my bone marrow is being damaged.  I am being constantly patched up and enduring difficult surgeries and recoveries as a result.

I constantly fracture both my feet and ankles and I have a right sided sacral pain which cripples my right leg. My left femur remains broken 3 years on, as the disease hampers healing. My entire spine from C2 to S1 is riddled with severe degenerative disc disease, disc herniations impinging nerve roots and stenosis.

The pain is unrelenting and nothing much reduces it’s intensity. I am, for want of a better word, crippled.

Finding Ways to Live in Limbo

I want to be able to prepare for what the future holds in some way. We all, in general, like to plan ahead in life. We plan for retirement,  we plan holidays , we plan special events. We look forward to things.

It’s called living.

I’m in limbo. I’m in pain. I face more surgeries and an unknown future.

I’m so tired, no actually I’m exhausted.

I need to deal with this though as answers may not be forth coming, not the sort I would like anyway. I need to be prepared for more of the unknown, more questions than answers.

I need to be strong, stay strong. I need to find ways to live in the limbo.

I will find that strength but at this precise moment I’m so physically tired from the constant severity of my pain.

I need to grieve again. I know that grieving is part of acceptance. Even when we have accepted our situation, as I have for the most part, there are still seasons where we will go through periods of grief again.

When I worked as a Change Management Consultant I used a grief model with organisations dealing with massive change. I’ve shared it on my blog before but it’s so clear and simple, it’s worth sharing again.

The 5 G’s of Change

Griping – this stage is when you feel like you just can’t do this. It’s all too much.

Groaning– this stage is the complaining stage. You want to let the whole world know how difficult life is.

Groping – during this stage you begin to walk forward as if in a forest, moving the trees out of your way so you begin to see a little clearer

Grasping – You begin to understand what the new situation means

Growing – You embrace the new, find ways to live again and acceptance brings peace.

I’ve journeyed through this model a number of times over the years and I think I’m taking some time again to revisit it.

Life with chronic illness will always have twists and turns. It will cause us at times to walk in circles. We will find ourselves feeling all the stages of grief washing over us again at some point on the winding road.

Don’t fight it when that happens. Take it as a sign that you need to look after yourself for a while and give yourself time to regroup.

Answers may not come, life may not get any easier but you will adjust. With that adjustment will come a sense of peace again. Your current time of weakness will become your future strength.

Life just isn’t straight forward…ever!

Take care

Sam xx

 

 

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

 

Change of Plans

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One thing we can guarantee when living with a chronic disease is that we will always be changing plans.

My extra cleaning activities this week have rendered my legs useless. I too easily forget that I’m only 10 weeks into a 6 month recovery from major surgery & that time frame is based on someone with healthy bones & no underlying autoimmune diseases. I also too easily forget that I have had surgery after surgery for the past 19 months. 10 weeks seems so long & I constantly set goals that are not appropriate. I’ve lived a life of setting goals that are challenging & that push myself. My mindset has always been to find a solution to every problem & achieve a positive outcome. I can still do that on many levels but my focus needs to be on non physical achievements.

Today I can’t get out of bed. My legs have swollen twice the size & the pain is unrelenting whether I sit, stand, lie down & walking is out of the question.

So, I have some choices. I can feel overwhelmed ( I’ve done that all night) or I can give myself a good talking to & re evaluate my expectations & more importantly re evaluate what “achievement” looks like in my new life.

I’ve just had to cancel my dentist appointment & I am so disappointed in myself & my body for having to do that. If however I stay feeling disappointed I won’t be able to clear my head & think about what sort of goals, realistic goals I should set myself.

So while I wait for my legs to co- operate with me again I’m going to spend time re evaluating my goals & changing plans. Should keep me busy & out of trouble for a while.  😊

4 week and counting

I’m nearly 4 weeks post surgery and this time around seems so much harder than all the others. I think the main reason for that is because I was only 8 weeks post surgery on my broken leg when I had this rod inserted into the other leg. Having 2 legs with titanium rods from hip to knee is a different sensation too. For the moment I’ve lost both limbs. The bruising from the thigh has travelled down to my foot and each morning it gets more dramatic and interesting….not to mention painful!

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I’m more reliant on my crutches than every before and my activity levels are nowhere near where I would like them.

That will improve over time, although the jury is still out on the “case of my dead bones” and all that might entail.

So in the meantime I wake everyday eager and hopeful for some improvement to my quality of life. There are glimmers each day. I can make the morning coffee now, I can potter around the house slowly, very slowly, dusting. I even managed to get out last week for the first time, granted it was for a blood test but I have grander plans for this week….a visit to my GP and maybe even a coffee out. I’m also slower lowering the dose of the stronger pain killers. Getting that balance right is tricky but I am keen not to stay on them for longer than I have to.

We know there is a strong possibility in 3 months that I am going have to go through this all again and have the rod replaced in my broken leg. That thought horrifies me. I know though that for the moment I just need to focus on the here and now.  I need to focus on recovery and if in 3 months I have to go through more surgery, my track record tells me I’ll cope 😊