Loving “Moments” of Life

I would have thought that being disabled, and pretty much housebound, life would go slowly. I’d have thought each day would drag and each hour would leave me wondering how to fill my time.

Ha…How Wrong Was I !!

I can’t believe 2018 is nearly over.

What have I done with my year? What makes a chronic illness existence so busy.

As I pondered that question I realised the answer lies in how I spend my moments, not necessarily my days.

I’ve adjusted to my new life by filling it with moments of purpose. In many regards I am working as hard as I was when I was actively employed enjoying a successful career.

My online forum has replaced my old work life. My days are full of beautiful people and amazing conversations, in a virtual sense rather than in the workplace. I have an admin team to care for and 1600 plus forum members to provide a much needed service to.

On top of that I blog, write, manage my health and help my husband care for our home. My health takes up a lot of time with appointments, procedures and surgeries and just overall pacing of all basic physical activities.

Put all that together and hours, days, weeks, months and quite clearly a whole year, just fly by.

20181209_211800_0001.png

Loving Life

As crazy as this may sound, I’m loving life.

I say crazy because I’m sure many people must think I should be curled up in a ball, rocking back and forth in a corner. I have considered it on really bad days but it’s just not me.

Broken bones due to my crippling bone disease, Rheumatoid Arthritis and associated autoimmune issues, extreme fatigue and a stoma don’t bode well for a “loving life” campaign. But that’s just my flesh and bones. It’s not my soul. It’s not what really matters.

My heart still beats and my brain still works and I am so so grateful for that. Yes, life can be hard and many days out of the 365 per year are not pretty, but moments in those days are.

Moment by Moment

Moments when the pain meds kick in enough to let me write or be active on my forum. Moments when I can do something nice with or for my husband.

They are the moments that are strung together to make the year go fast. They are the moments that complete me. They are the moments that make me love life. They are the moments that cause me to push on and not give up.

This is life. This is my life. I only get one and it needs to matter.

Troubles Are Momentary Too

2 Corinthians 4:17 (NIV)

For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.

When living with chronic disease it can so easily feel as if our flares and high pain levels are unrelenting. Believe me I often feel like that. The pain is real, the disability is real.

However, the excruciating pain I suffer comes in waves. The pain is always high but I’ve adjusted to a moderate level of pain where I can function, in my restrictive way.

The excruciating pain lasts for moments. Sometimes too many moments strung together, but moments nonetheless.

If I think about my days in terms of moments, I can focus on the fact I will get moments when moderate pain allows me to write, to laugh, to listen, to participate in life to some degree.

The moments of severe pain and darkness will be outweighed by the lighter moments….every single time.

What About Days When There Are No Light Moments?

Yes, they do happen but they are rare. Even when I’ve been in hospital, post major surgery, there has still been something to make me smile. A caring nurse, seeing my husband walk through the door with a real coffee in hand or a decent cup of tea, these moments stand out to me.

These little moments of relief manage to squeeze their way into the dark days. We just have to look for them and hold onto them. They offer us hope that bigger, brighter moments are just around the corner.

If you really are feeling completely overwhelmed by your disabled and chronic illness life, it’s so important to seek help.

Professional counsellors can help provide coping techniques and skills to assist you live your best life possible.

It’s not about living in denial or being delusion about the reality of the hard moments. By acknowledging those, we can learn to use them to absolutely savour the good moments.

Life then becomes precious, every single day.

I sometimes think I’m more alive now than when I was healthy, living a crazy rat race existence. I just ran from moment to moment and day to day in my old life and much of it is a blur as I look back.

New Year Moments

As a new year approaches I won’t be making any great resolutions or setting any concrete plans. I have some rough idea of events and tasks which require some effort and thought, but timeframes need to be flexible.

I know there will be tough moments followed by good moments and that’s enough for me.

Afterall, life is like that in both sickness and in health. None of us are immune from the highs and the lows.

How we choose to live with them and through them, makes all the difference.

I know what I’m going to choose. I choose to live for moments of happiness, creativity, community, love and moderate pain. I choose to hold on to hope for bright moments to follow tough ones.

Rather than expecting a perfect life filled with halcyon days, I choose to love and cherish the moments of my life where I can engage with some of the activities I enjoy.

What will you choose?

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 a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

 

Please click here to read our Privacy Policy

awards_Community_(2)

WEGO Health Award 2018 Nominee

 

 

 

 

Dealing With Disease And Disappointments

Disappointments come to us all. They are part of life. As hard as they are to endure they can make the special moments in life seem even more precious. They also often teach us valuable life lessons.

Despite that knowledge, we still need to live through life’s disappointments. We need to find ways to survive them.

While no one is immune from disappointments, when you live with a chronic disease they can sometimes feel like the absolute last straw.

The Disappointment Scale

I’m not going to pretend I have any amazing solutions to dealing with disappointments. I have however, definitely had quite a bit of experience with my chronic illness creating chaos and unexpected life changing twists and turns.

I’m in the middle of a series of disappointing circumstances at the moment. Sometimes they seem like a gift that keeps on giving and not the welcome kind.

Disappointments tend to have a scale in my world.  They are either minor, moderate or major.

Let me give you an example of where my current disappointments sit on my scale;

  • Mild – Unable to help my husband decorate for Christmas because I’m recovering from back surgery.
  • Moderate – Unable to spend a lot of time with our family recently when they visited from interstate. Again because of recovering from spinal surgery and the pain of my bone disease.
  • Major – We have to sell our home in the New Year as my medical expenses continue to spiral due to my chronic illness.

Categorising disappointments does a couple of things.

Firstly, it identifies them which helps me understand why I might be feeling a bit melancholy.

Secondly, it helps me begin to work on a change of mindset in relation to my disappointments.

Thirdly, it creates a call to action, where needed, to begin embracing changes required.

20181128_170911_0001

Turning Disappointments Into Opportunities

Now not all disappointments will become an opportunity for change in a physical sense.

They can be used to change how we think about a situation though and that provides opportunity for personal growth.

So here is how I’m approaching my 3 disappointments. Keep in mind I have to work at this and so will you with your own scenarios. You can’t just flick a switch and all disappointments will magically be gone.

So, my responses to each disappointment are:

  • Mild – I’m so grateful I have my husband to decorate. We are keeping it all simple this year so I can help him with a table top tree. I’ll be able to reach it without damaging my back or hindering surgery recovery. I keep reminding myself in the big scheme of things this is a very minor disappointment. I can let it go.
  • Moderate – I so wanted to spend more time with our family. It’s hard to shake this disappointment off. I need to hold onto the memories of the special times we did spend together. The love and laughter that filled our home when they visited still remains and when I think of that a huge smile fills my heart. Moments may be small but they can be full of so much quality and that’s what counts. Changing my mindset to one of thankfulness for those precious moments, does make a moderate looming disappointment become milder. That’s progress which is what matters when dealing with unavoidable disappointments.
  • Major – This one is not easy. I’m not super attached to the bricks and mortar of our home but the thought of physically moving is awful. I’m not opposed to renting, which is what we will need to do, but the thought of a lease not being renewed after 6 or 12 months and further moves ahead….it petrifies me. Physically I’m just not capable. My body needs security yet the irony is it’s my body that is forcing us into this situation. Ongoing medical bills, needing a low set home and space to move around with mobility equipment more easily, are all real needs that are creating this major disappointment.

Tackling A Major Disappointment Head On

I’ve looked at my major disappointment of needing to sell our home from every angle. If I analyse it any further I’m sure I’ll go mad!!

There is no other solution but to accept it. I will feel emotional pain with this disappointment. It’s a normal healthy response to a life changing decision, forced on my husband and I, due to chronic disease. It’s not easy to swallow.

But it’s not impossible.

Moving towards it little by little begins to make it my new reality. We’ve picked the listing month to put our home on the market. We’ve found an agent we like, trust and who will ensure my health and disability are accommodated throughout the selling process. We have a huge sense of relief about that.

We have a rough idea of where we will rent, the cost, the type of home and availability. We are praying we will find a landlord who is open to long term tenants.

Every now and again we think about buying another home but our budget doesn’t stretch to a house that accommodates our needs, so we have to accept that door is closed.

I must admit I keep peeking in the “closed door” just to make sure but I keep getting the same answer.

Acceptance Alongside Disappointment

As we begin to walk through our disappointment, by acknowledging it and looking at ways to deal with it, acceptance will come alongside and begin to provide clarity of thought and new direction.

It almost becomes a partnership. The hurt and disappointment eventually turns to the hope and opportunities that change can bring.

Chronic Illness will always bring us unexpected and unwanted packages. How we deal with these can make a difference to both our physical and mental well being. Allowing disappointments to linger for longer than necessary can so quickly drag us down.

If you are experiencing a season of disappointments I hope my “Disappointment Scale” of mild, moderate and major, helps you work through how best to approach life’s challenges.

Feel the pain, acknowledge the consequences of the disappointment and begin to look for ways to think differently about the situation. Where possible make plans to take action to implement necessary changes.

Disease may make disappointments more difficult but, with a change of mindset and a base plan, I so hope you find it’s not impossible to deal with them when they arise.

Take care

Sam xx

If you’re looking for genuine support, care, understanding & friendship, a place to share your seasonal changes & challenges,  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”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network and the  Grace Girls Facebook Group

Please click here to read our Privacy Policy

This post was shared at the Salt and Light Linkup Group

awards_Community_(2)

WEGO Health Award 2018 Nominee

 

Surgery Can’t Come Soon Enough!

My Spinal Specialist appointment went well. I think that’s the best description under the circumstances.

I managed to walk to his office using my walker and I thought I was doing well. As I entered his room I smiled as brightly as possible.

However the pain in my eyes and my inability to move faster than a snail, revealed a very different picture to my Dr than the positive one I was working on presenting. He knew just looking at me I was doing far from well.

He grimaced and said;

So it’s clear the facet joint injections didn’t work” 

I looked up as I struggled to sit in the chair in the office and replied;

” Unfortunately not, although the anaesthetic worked a little for 24 hours”

I knew I was grasping at straws at this point and so did my Surgeon.

Nothing Like Getting Straight To The Point

I thought we would sit down and have a chat about numerous options. Well, a few options….it was clear we were getting to the end of possible treatments. In hospital we had discussed radio frequency neurotomy as the next step, so I was at least expecting to revisit this idea.

Apparently not!

My Dr turned his laptop around to show me my MRI. I had seen it before but he had been studying it. He pointed out the spinal stenosis was severe and was obviously not going to respond to conservative treatment. We had tried.

You really only have one option available to keep you out of a wheelchair. You need decompression surgery.”

Those words lingered in the air for a moment. I wasn’t expecting him to be so definite. We both knew that surgery of any kind would be risky for me. I’ve had so many and my bones just have a mind of their own. We never know what to expect when I’m opened up.

I raised this fact. He acknowledged he was concerned about what he would find. Would my bones remain stable? Would they be so hard he’ll need specialised equipment? We just don’t know.

So why are we even contemplating going ahead?

20181028_201433_0001.png

We Have No Choice

We simply don’t have a choice. The pain from the stenosis is horrendous. The Spinal cord compression is dangerously close to requiring emergency surgery. Best to avoid that scenario. I also have a lesion at L4. It may be a bone spur or a cyst but it’s not going away and will only get worse.

I can’t even begin to think what “worse” would be like.

So, I’m having surgery. Open lumbar laminectomy and decompression spinal surgery at L4/L5, on the 9th November.

It will take 3 months to recover with the first 6 weeks being very difficult. I won’t be able to sit or stand for longer than 15 to 20 mins at a time. No twisting or bending. No housework. No lifting. No stretching up. I will only be able to sleep on my back.

My situation and recovery will be complicated by my bone disease and especially my non-union broken left femur and foot fractures.

All we can really hope for is eventual relief from the intensity of my back pain so I can better manage my leg and overarching bone pain.

Trust in the Lord with all your heart, and do not lean on your own understanding.

Proverbs 3 v 5

Taking The Risk

Sometimes in life you just have to take a risk. You have to gather all the information you have available and weigh up the cost and the benefit.

I don’t like the thought of the tough recovery period but I’ve been through major surgery before and I can do it again.

I know there is a chance the surgery won’t work but at this point I have nothing to lose.

I know my Surgeon is not entering into this lightly and he has his own concerns. That gives me confidence that I am in good hands. He cares and he will be doing every thing he can to mitigate the risks.

Does that mean I won’t get cold feet? Believe me I will definitely be thinking of reasons to run the other way.

Thankfully I do tend to face things head on so I’ll be proceeding. When I do get moments of feeling like cancelling, my body has a great way of reminding me that I have a problem.

Accepting The Inevitable

I had a goal of getting to a local shop for 10 mins this afternoon. A goal that failed miserably!

My back rendered me unable to move at all from 7pm last night. Same situation that landed me in hospital 2 weeks ago. I avoided the ambulance trip this time as I know complete rest is the answer until surgery and I want to be at home in the lead up to surgery.

It was a timely wakeup call reminding me, even if I get an hours relief from pain it just isn’t lasting.

I’d love nothing more than my back to miraculously heal. I’d love nothing more than to not need more surgery.

Sometimes we just have to accept that we can’t have or do what we might like. When our plans have to change, or our hopes are not realised, it’s not the end of the world. It’s a setback.

Finding a way to deal with chronic illness setbacks is the key to remaining positive. It’s the key to survival.

So, my advice…..no matter what difficulty you’re facing, acknowledge it, cry about it, talk about it, research all options available and then set it all aside and do something you’ll enjoy.

My husband helped me get up and dressed and seated downstairs today and we enjoyed a favourite Father Brown episode. I also enjoyed some online shopping……a couple of dresses that will be easy to slip on post surgery.

So life isn’t all that bad, despite pain and disability. There are always options to salvage setbacks and disappointments

One of the biggest positives of my recent setback is quite simple. It’s brought a change of attitude and I can honestly say…..Surgery can’t come soon enough!

Sam xx

I can do all things through him who strengthens me.

Philippians 4 v 13

If you’re looking for genuine support, care, understanding and 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 and complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network,  the  Grace Girls Facebook Group and Salt and Light Linkup Group

If you would like to read a little more about my journey, here’s the link to My Story

Please click here to read our Privacy Policy

awards_Community_(2)

WEGO Health Award 2018 Nominee

Suddenly So Surreal

When you’ve lived with Chronic Illness for a number of years, at some point, you adjust to a new way of living. You eventually find a new norm.

While you might expect a few highs, lows and some disease flares along the way, generally life evolves into a settled and comfortable pattern.

Until it suddenly, without warning, doesn’t anymore!

Sometimes after years of living a new and well-adjusted life, something changes. Something that causes your disease to suddenly seem so surreal.

Something that threatens to once again create a world of chaos and disorder.

Something that will force you to find another new norm.

Surreal and Scary

My rare bone disease is the biggest concern in terms of progression and worsening disability. I have known that since the outset.

It’s insidious. It attacks without warning and when it does, it breaks my bones and refuses to heal them. If it doesn’t break them it destabilised them, causing excruciating pain as the bones die.

I thought I had a good handle on the nature of my disease and in general I do.

However, the latest attack has been so severe every aspect of my life needs to be reviewed.

It’s surreal and I need to admit to myself……it is scary.

In the space of 2 months I’ve gone from being chronically disabled, using crutches and a walker to mobilise, to severely disabled, with the very real possibility of being permanently in a wheelchair. Permanently unable to do some of the simpler day to-day basic care tasks without help.

My pain levels in my lower spine are currently unbelievable. They are beyond anything my broken femur threw at me. The consistent throbbing is almost audible.

So far conservative treatment has failed and even my recent lumbar laminectomy/decompression surgery may not deliver the desired results.

20181023_224025_0001.png

Big Decisions At Every Turn

Big decisions are confronting me at every turn.

I know I will find a way to adjust. At the moment though I am being swamped in a sea of surrealism.

My issue is the life my husband and I currently live, doesn’t fit a wheelchair bound scenario.

Our home is all wrong for a start. We need a low set home and it needs to be a little smaller and manageable.

The thought of making such a huge change in our lives, while I’m looking down the barrel of more surgery and a long recovery, is so daunting. Even without the prospect of surgery, my pain is just so constant I need stability, not change, to help manage my situation.

I’m not physically capable of doing anything to help with a house move. I can thankfully organise anything that’s thrown at me, so I’ll be focusing on using this skill to facilitate any necessary changes.

Before any of that can happen I have to shake off this surreal slump I’m in.

Shake It Off

Don’t worry, I’m not about to break out in a Taylor Swift song.

I’m going to work through a process of how to shake off this surreal situation and bring it into the world of realism. Better still, I’m planning on making my new reality my new norm, as quickly as possible.

So here’s my plan:

  1. Allow myself to feel the shock and horror of my situation. Denial of these feelings won’t help me move on.
  2. Take a little time out from normal activities to digest what’s happening to my body. My brain needs to catchup with the physical manifestations of my disease progression.
  3. Talk with my husband about how I’m feeling and what these changes will mean for both of us. Talking out loud helps to make a surreal situation more real.
  4. Begin talking to family and close friends about the changes we are facing.
  5. Start taking practical steps towards changes required. Researching various options is a good starting point.
  6. Make lists. Writing down the details of required changes also helps make a situation more real. It’s gives a sense of ,”ok we are really doing this”
  7. Rest. When life throws us challenges that rock our world, we need replenishing. Rest is vital to keep as positive an outlook as possible. That doesn’t necessarily mean sleeping but just doing something that helps you relax. Something that centres you and reminds you that some old norms will still remain.

Feeling A Little Better

When life suddenly seems so surreal, it’s not going to just as suddenly become all ok.

Shock is involved and that takes a little recovery time. The grief process is revisited yet again.

Little by little you will begin to feel better. A small decision will be made that is a catalyst for a larger change. Before you know it you’ll be on a journey towards a new norm.

So as my sea of surrealism keeps washing over me, I’m going to remind myself I have a good track record of adjusting.

I’m going to remind myself that I have a solid simple step plan to follow to help me move through the deep waters to the shoreline.

I’m going to remind myself life will evolve into something beautiful again.

I’m going to remind myself that God has always provided me a safe passage through the storms of life, no matter the depth of the challenge.

With that thought, peace and hope returns.

Life will be ok. Different but ok.

I’ll be ok!

Sam xx

Will your anchor hold in the storms of life

Author: Priscilla J. Owens

Will your anchor hold in the storms of life,
when the clouds unfold their wings of strife?
When the strong tides lift, and the cables strain,
will your anchor drift, or firm remain?
[Refrain:]
We have an anchor that keeps the soul
steadfast and sure while the billows roll;
fastened to the Rock which cannot move,
grounded firm and deep in the Saviour’s love!

2 Will your anchor hold in the straits of fear,
when the breakers roar and the reef is near?
While the surges rave, and the wild winds blow,
shall the angry waves then your bark o’erflow?

 

If you’re looking for genuine support, care, understanding and 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 and complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network,  the  Grace Girls Facebook Group and Salt and Light Linkup Group

If you would like to read a little more about my journey, here’s the link to My Story

Please click here to read our Privacy Policy

awards_Community_(2)

WEGO Health Award 2018 Nominee

 

 

 

 

 

 

Chronic Illness Catastrophe Days – How Can We Survive These?

Ok, so the title probably sounds a little more dramatic than where I’m going with this…..but maybe not!!

My regular readers will know I generally have a positive outlook on life, despite my disabling pain and crazy bone disease.

I have accepted my circumstances, I love the things I can do and I don’t stress about the things that are beyond my reach. My disclaimer to this comment is; “on most days”.

There is always an exception in every situation.

Every now and again I wake up to a “Chronic Illness Catastrophe Day”.

On those days, it’s a struggle to keep my head above water. I hate them as they are so hard to manage, no matter how much faith, hope or strength of character you may have.

These are days that happen to all of us with chronic illness and I’m on a quest to work out how best to manage them once and for all!

So What’s A Chronic Illness Catastrophe Day?

These are the days when everything comes crashing in on me. Days when pain levels are so extreme that I want to escape my body. On these days I visualise having a zip opening to let me crawl out from my skin and just have a few hours of relief. Away from pain, away from extreme fatigue.

These are the days when breathing hurts as fatigue overwhelms. These are the days when, despite my normal positive outlook, my mind wants to grab onto less than helpful thoughts. Thoughts of “I can’t” rather than “I can”, constantly shout at me.

These are the days when well-meaning comments from loved ones and friends, are misconstrued as I listen to them. My fault, not their’s. On these days even words of support offer empty comfort. The pain is just too overwhelming and constant to hear or feel anything but thunderous throbbing.

20181004_151249_0001

Finding A Way Through The Catastrophe Cloud

I think to a large degree we need to go with the flow on these “Chronic Illness Catastrophe Days”.

The issue is, left to their own devices, these days can quickly turn into a week, a fortnight, a month and before you know it depression has taken hold.

I think a two-day recovery plan is a good starting point to getting back on track. It’s also designed as a plan that can be re-cycled as needed.

So, let’s assume this is day one of what could potentially be a “Chronic Illness Catastrophe Cycle”.

This is the hardest day to cope with but it’s integral to make a start on a fight back plan on Day One.

Day One – “The Catastrophe Day”

  • Stop Fighting – I’m aware that sounds contradictory when we are talking about a “fight back plan” but I tend to fight against these days and push my body. That’s not what my body needs. It’s generally screaming to try to make me listen and stop. It needs rest, complete rest and I need to surrender to it.

 

  • Rest and Retreat – When we stop fighting, our minds calm a little and sanity begins to return. Rest and retreat means to stop, lie down, sleep if you can or just do something that helps provide a focus outside of your body. For me it means lying on the bed and writing or watching a relaxing TV show. Sometimes it means no noise at all. TV off, music off and just deep breathing in a quiet comfortable setting.

 

  • Test The Waters – After you’ve retreated for a couple of hours, it’s time to test the waters. Imagine dipping your toe in the ocean to see if the temperature is comfortable. This is the same concept. If you don’t want to end up in a “Chronic Illness Catastrophe Cycle”, day one needs to have a bit of movement. Slowly get up from your bed or chair, or from wherever you had retreated to and just see how you feel. If everything seems overwhelming again, return to your retreat position and try again in an hour. Once you feel a little stronger from your retreat session, it’s time to move to the next stage.

 

  • Re-connect – when having a “Chronic Illness Catastrophe Day” it’s hard enough connecting with ourselves, let alone others so be careful in this stage. You’re  probably feeling vulnerable and grumpy and contact with others could quickly turn into a less than positive experience. My biggest tip here is…..make a coffee, tea or your drink of choice and quietly sit and sip it while you think about reconnecting with the world. Once you are feeling a little more settled, check in on your favourite FB support group, text a special friend to say hi, or if you have family at home, engage in some light conversation. No big decisions or discussions should take place on these days.

 

  • Rest and Retreat again – Well Done! You’ve made wonderful progress with re-connecting. These are difficult days and not ones to ignore and push through so it’s time to rest and retreat again….until tomorrow!

 

Day Two – “The Recovery Day”

Day Two is an important day. You will likely wake up feeling a little better than the day before but also tired and vulnerable. It’s a day you need to move through very slowly and carefully.

  • Start Slowly – You don’t want to undo the great work you did yesterday. You need a slow start. No rushing out of bed!!

 

  • A “No Agenda” Day – Day 2 needs to be agenda free. The whole aim of this day is to keep your stress levels low as this helps manage pain. You need to move through the day doing things that help you stay relaxed, while spending more time upright than in bed. Lingering in bed, for too many days in a row, can affect your mental health and exasperate physical pain. Getting up on Day 2 is important to help the recovery process. Remember yesterday was the  “Chronic Illness Catastrophe Day”, today is the recovery day.

 

  • Self Care – If ever there was a day to indulge in a little self-care this is it. Whatever works for you within your limitations do that. Sit in the sun and get some fresh air. Have a hot shower and feel the water working on your inflamed body. Make a special lunch treat or have Uber treats deliver your favourite food. Whatever you do, today is not the day to do chores around the home or household admin tasks. If possible don’t even make phone calls that are medically related. Today is about recovering from the “Chronic Illness Catastrophe Day”.

 

  • Rest and Retreat again – Day 2 needs to be a short day. You’ve done so well to get up, move a little and engage in some self-care activities. You’ll still be dealing with many symptoms and issues from your “Chronic Illness Catastrophe Day”, so you can’t risk over doing things. An early night resting in bed, indulging in watching a DVD or favourite show, is a “must do”.

The Morning After

A “Chronic Illness Catastrophe Day” is a little like getting over a hangover (not that I’d know anything about that course!!)

Day 3 will feel like the morning after a big day out. You need to still be kind to yourself but it is important to start re-connecting and re-engaging with the wider world.

If your catastrophe day is lingering, because of your pain and symptoms, Day 3 is a good time to review your mental and physical health situation. Ask yourself some basic questions;

  • Do you need to see your Dr?
  • Do you have new symptoms?
  • Do you think you can push through the day and see how you go?
  • Are you feeling depressed?

If you answered yes to any of these questions, Day 3 is action day. Make an appointment to see your Dr or Counselor. Don’t let the issue linger. Taking action will help you to feel more in control and that alone will help start you on the road to recovery.

Thankgoodness It’s Over!

Hopefully for most of us a “Chronic Illness Catastrophe Day” is just that….one day with a second day to recover.

Don’t try to push through these days. If we do, ultimately we end up in a worse state.

If your body is screaming, it’s doing so for a reason. It needs help and you are the first point of call to help it. Please listen and respond with love and care.

I hope your “Chronic Illness Catastrophe Days” are few and far between. When they do come, I hope you will know that you are not alone and they will soon pass with a bit of careful management.

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”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network,  the  Grace Girls Facebook Group and Salt and Light Linkup Group

If you would like to read a little more about my journey, here’s the link to My Story

Please click here to read our Privacy Policy

awards_Community_(2)

WEGO Health Award 2018 Nominee

 

 

 

 

Healing Comes In Many Forms…..Even With A Broken Body

October 6th 2014. A day I will never forget.

It’s the day my femur broke.  (Click on the link to read about that extraordinary day)

It was a life changing day. A day that would start me on a journey with a rare bone disease, so rare that even Specialists would stand and scratch their heads at the craziness of it.

None of my medical team know why I have it, what caused it and none of us anticipated the aggressiveness of it.

All we know is my bones continue to get denser and my bone turnover is negligible. A combination that causes major bones, like my femurs, to snap in two as if I’d been in a major car crash. It causes my feet to fracture while doing nothing more than wiggling my toes in bed.

My spine is now affected with severe spinal lateral and central canal stenosis, compressing my spinal cord. My hips have avascular necrosis and both of these conditions have progressed from mild to severe in less than a year.

Other bones throughout my body throb with severe pain and cause functional disability.  I can’t keep having scans on every new threatening fracture or damage, so we wait until something breaks, or the pain from a new area severely impacts quality of life further.

Still Broken

Four years on and my left femur is still broken. It is official diagnosed as “non-union”. The bone disease will continue to prevent it from healing.

It’s almost become the least of my issues though as the disease has started to aggressively attack other areas of my body.

I’m used to my non-union femur. I know its pain, its restrictions, its abilities. It’s familiar. It’s become a part of me.

I’m the same with my foot fractures. They are familiar. I expect them. I know how to deal with them and I basically ignore them. If one becomes displaced I know to seek treatment but if they stay aligned, all is good. No one can do anything so there’s no point worrying.

20181001_170123_0001

Healing Comes In Many Forms

When we think of healing, generally we think of getting better. We expect a person no longer has their disease.

Healing can absolutely come in that form and it’s something to be celebrated when it does.

What about diseases that have no cure and no treatment? As a Christian I believe God can heal and does completely heal some people of all kinds of diseases.

Why some and not others? I really don’t have the answer to that.

I do think healing can come in surprise packages. We sometimes miss out on seeing a miracle because we have an assumption as to what the miracle should look like.

Let me explain what I mean….hopefully I’ll make sense.

I’m not physically healed and I don’t think that I’m going to be. I do however believe that I have been given a very special gift of healing.

The ability or gift to accept my circumstances. I’m not weighed down by them. I’m happy, content and excited about the purpose I have in my life, despite my very limited physical abilities.

Isaiah 41:10 ESV “Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand”

A Perfect Peacefulness

I have a peace that allows me freedom from anxiety. It doesn’t mean I don’t worry about things from time to time but I don’t get distressed. I’d describe any worries I have as cautious concerns. They are healthy and necessary in order to make balanced life decisions.

To me this is the greatest gift of healing given my disease. Stress and anxiety worsen pain. My body screams with pain 24 hours a day. If I wasn’t able to be at peace with my condition and remain free from unnecessary anxiety, I honestly would be in major trouble.

I absolutely thank God for giving me a “peace that passes all understanding”

Philippians 4:7 ESVAnd the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus”

If you’re feeling a little swamped by your life circumstances, your chronic illness and disabilities, take some time to pause.

Are you expecting complete healing? Are you so focused on being perfectly well you are at risk of missing out on the gift of healing in an unexpected way.

My disease has allowed me to connect with so many people from around the world, through my blog and my support forum. It’s allowed me to spend time writing and perusing this life long passion.

It’s allowed me to spend quality time with my husband who I absolutely adore.

Sure, it’s taken things from my life but even when we are healthy, life can take us in directions that require enormous sacrifices and loss.

Becoming Abled

If we can stop looking at our disease as “unfair” and “cruel” and stop thinking “why me”, our outlook can change.

“Why me” can become “why not me”. Sickness is a part of life. Accepting it as your new reality, can help change your disabled world into an abled world.

Peace brings clarity of thought. Peace is the opposite of war. If we stop fighting against ourselves by accepting our new life, warts and all, peace will come.

When peace comes an unexpected healing comes and that’s an amazing gift.

That’s a gift I pray you will also receive.

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”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network,  the  Grace Girls Facebook Group and Salt and Light Linkup Group

If you would like to read a little more about my journey, here’s the link to My Story

Please click here to read our Privacy Policy

awards_Community_(2)

WEGO Health Award 2018 Nominee

 

The “Chronic Illness” Law of Diminishing Returns

2018 RABlog Week Banner

My title might suggest a study in economics but rest assured it is not where I am heading with this.

The Law of Diminishing Returns 

Refers to a point at which the level of  benefits gained is less than the amount of money or energy invested.

When you live with chronic illness, over time your expectations, of yourself and your medical team in particular, begin to diminish.

In my case it’s not because I don’t trust my medical team or because they have disappointed me. That couldn’t be further from the truth. They have all been amazing in their care, support and passionate desire to try to find treatment options for me.

Expectations and tangible outcomes can begin to diminish the longer you live with a particular disease. Especially when all known treatment options have been exhausted.

I know my disease is progressive, rare and my disability is steadily increasing before my eyes. There is no escaping that reality. I wake up to it everyday.

Ever the optimist, I do however wake each morning hoping that I might get a slight pain reprieve or be able to achieve a few things on my “to do list”. That’s called hope and on some days that hope is realised.

The Diminishing Return of Doctor’s Appointments

It’s been a while since I have had hope of good news or expected any great outcomes from my medical appointments. Usually they are routine, follow-up type appointments. Just checking blood tests, looking at latest x-rays and all agreeing;

“yes, the legs still broken and the disease is progressing. Sorry still no treatment or cure”.

It’s not quite as matter of fact as that but it’s a pretty close depiction of how things go.  I thankfully have a great relationship with my Specialists and GP, so we also throw around ideas and have a good chat. In general I look forward to my appointments as these people have become my support crew and my friends.

When I first started out on my rare bone disease journey, every appointment had a huge return. There was research opportunities where I was a willing guinea pig for science. My attitude was sign me up for anything if it might help others and possibly provide me answers. Unfortunately these research opportunities didn’t even provide a diminishing return. Instead they came up with negative or irrelevant results time and time again.

My Orthopaedic Surgeon was full of hope in the early days. His enthusiasm was contagious, as he outlined his strategic surgical plans to give my broken femurs every chance of healing.

Each appointment in the early days was following up my recovery post surgery and planning the next surgical adventure. They were full of action.

There was also the bedside “in-patient” catchup with my Specialists, as I seemed to be in hospital more than at home for three years running.

In the early days of my diagnosis, my Endocrinologist was searching for answers and organising bone marrow biopsies and a myriad of other tests/scans, hoping to uncover a cause and treatment plan.

As one year turned into two and into three and into four, more and more open doors began to slam shut. The hope for treatment, a cure or even some answers as to why this was happening, all began to diminish, appointment after appointment.

20180907_223116_0001

Is Anyone To Blame?

It’s a natural response to want to find reasons for why things go wrong in life.

Who’s to blame?

We ask ourselves so many questions when chronically ill. Did I do something wrong? Is my medical team keeping something from me? Has someone made a mistake? Is there still an answer out there and should I keep searching?

All valid questions but they are also questions that can send us on a wild goose chase. A chase that ultimately will do nothing but leave us absolutely exhausted. Especially if we have done everything possible to find answers, seek second opinions, or maybe even third or fourth…..there comes a time when we have to stop.

The Chronic Illness “Law of Diminishing Returns”, At Some Point, Begs to be Acknowledged and Accepted.

So Many Questions, So Few Answers!

Why bother with future appointments? Why not give up?

Why?

I think we owe it to ourselves to reassess our medical needs once diagnosed, especially when all treatment has been exhausted or is in maintenance mode.

We owe it to ourselves to still have a team of medical professionals available to support us and to monitor our health.

Things can change over time. New symptoms can arise or old symptoms can worsen and require attention. We may need documentation filled out for disability support etc. We need a medical team on our side who are keeping abreast of our case.

Future appointments are important but they can be approached differently as we take into account the “law of diminishing returns”. We don’t want to waste our money or our energy on multiple appointments that wouldn’t achieve anything.

It’s definitely worth talking to your Specialists about managing your time and energy in regards to your medical commitments.

I have four main Specialists who I need to juggle at the moment. An Orthopeadic Surgeon, Endocrinologist, Clinical Immunologist and Gastroenterologist. There are others who I see every 12 to 18 weeks as months.

My Orthopaedic Surgeon used to see me every 3 months, then every 6 months. It’s still every 6 months as he has to keep an eye on my non-union femur, as the pole could break.

For the next appointment we are going to have a phone consultation. He has sent me the x-ray form and I’ll get that done a week before we chat. He doesn’t want me running around unnecessarily and I so appreciate that. He also expects me to contact him if my condition worsens beyond what I can handle. I can do that by phone or email.

I see my Endocrinologist every 6 months as she manages my bone disease and is still constantly looking for answers. She coordinates everyone else too. She is amazing via email and I can contact her anytime.

I always have phone consultations with my Clinical Immunologist. His building is too difficult for me to navigate. He manages my medication, especially Prednisone dosing, so I check in every 3 to 6 months. He leaves that up to me.

My Gastroenterologist is new to my team due to my recent Gastroparesis diagnosis. I’m seeing him every 6 months and his appointments are in those early stages of hope and promise. They too will undoubtedly come under “the law of diminishing returns” eventually.

Don’t Be Disheartened

If you are feeling like you should be getting more from your appointments and come away feeling frustrated, think about them in light of “the law of diminishing returns”.

Are you expecting more than is possible? Do you have all the answers you are going to get? Is it time to accept that you have a chronic illness?

A chronic illness generally doesn’t go away and there is only so much our GPs and Specialists can do about that.

Much of the solutions lie with us. Accepting our circumstances, making the relevant life changes to manage our symptoms and disabilities…….these are some of the key elements to our ongoing treatment plan and wellbeing.

So if your chronic illness journey is at that point where you are putting so much effort and energy into running around searching for answers, with a diminishing return from each appointment…..give yourself a break.

You’ve done all you can do. It’s not your fault. It’s not your Doctor’s fault.

It’s time for some self-care.

Sam xx

“The sufferings of this present time are not worth comparing with the glory that is to be revealed to us.”
—Romans 8:18

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 a regular Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network and the  Grace Girls Facebook Group

Please click here to read our Privacy Policy

awards_Community_(2)