Apparently Life Won’t Stand Still, Even If My Legs Won’t Work!

I recently saw one of my favourite Specialists. I always look forward to seeing this particular Specialist. We have become good friends and enjoy chatting about all things French. She is mad about France as am I. With me being born on Bastille Day and also loving French decor, the food and the language, well it was just inevitable that we quickly clicked after my first appointment 4 years ago.

An Academic Study

The discussion during this last appointment though was a little less frivolous and a lot more serious. We talked through my results and all that has been going on with my Rare Bone Disease.

All is progressing…..unfortunately in the wrong direction. We talked about coming to the point where I am now an academic study for my Specialist team.

They care, don’t get me wrong but I am a genetic anomaly. Rare, special, uncategorised and troublesome in terms of how to treat and manage my bone disease but of great interest to them medically.

My bone disease cannot be treated, it is permanent. My disability is permanent and progressive. This isn’t going away, short of a miracle. I believe in miracles so I am not discounting that possibility but I also have to, no need to, accept that my situation is permanent.

My legs and dead bones will remain dead. We don’t really know what to expect next. I will always walk with aids and require a wheelchair or scooter outside of the home, eventually inside too.

I can walk, aided by crutches, about 200 metres. While I can stand and move like that, I’m going to keep trying, despite the pain. My Medical team agree it’s a good idea.

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This Is Actually Happening to Me!

It was a little disconcerting when my Specialist was relieved that I have permanent residential care approval and the highest home care package approved. It made everything hit home.

This is real. This is happening to me. Not someone I know or care for but it’s me.

I think at that point in our conversation I had one of those out-of-body experiences. It was like I was in the room but not quite connected.

I’ve had many surreal experiences, as I’ve journeyed along this chronic illness path. One of those was when I was first told to prepare myself for needing a stoma. Again it’s not something you just go, “Ok, thanks, that’s great news…sign me up now.”

These things are life changing. They take time to digest and time to adjust to.

Hearing that my treatment is now palliative is very confronting.

It doesn’t mean I’m about to die in the immediate future.  It does though make me feel like I might be on an escalator, moving in that direction a little quicker than the average person.

Life Changing Decisions

More life changing decisions will need to be made over time in relation to my disability and with that thought, I realised that while my disability is permanent, life doesn’t stand still.

My legs might not move but life will soldier on.

The way I respond to the permanency of my disease will change over time. I will find better ways of doing things than the way I do them today.

I will find ways to use my situation to help others more, where I’m able. I will continue to grow with my disease.

I will learn things and experience things in life that I never would have without my disease. I will still set goals that are achievable for me. I will still live a full life in a very different way.

Choosing To Accept Life With My Disability

If I just focus on my disease being a permanent disability then I will struggle to move and live. I have to accept that it is permanent and without cure or treatment, otherwise I’ll be in denial and that won’t end well.

I choose to accept I have a permanent life changing disability and I can still embrace life. Wishing it would go away, wondering why it came in the first place, is a normal response but 4 years into this journey with my dead and dying bones, I am embracing that this is permanent.

It’s not going away but that doesn’t mean my life can’t have value and worth. I might have to dig a little deeper and look a little harder to find ways to enjoy my situation and that will always be a long term project.

What an exciting project though…discovering how to live life anew, embracing every change. Every new challenge presents an opportunity for me to learn and grow.

I need to continually remind myself that life isn’t over. It’s just different.

It’s actually a refreshing prospect! It can be life changing in a positive way.

Take care

Sam xx

You may be interested in another related recent blog post Is Acceptance Just Resignation?

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

I also write @ Blogs by Christian Women

Climbing Mountains With My Chronic Illness Friends

As I mused this morning about my day ahead, it was a blank page. I breathed a sigh of relief.  Most of my days are a blank page. I need to live this way.

No planning ahead, no great expectations, just living moment by moment. It’s a relief that I can live my life in this way. The thought of having to do it another way is unimaginable, especially as my disease progresses.

The Rat Race Is Over

So different to my previous life of constant meetings, appointments, phone calls, emails, texts, long working days etc. I’m ok with that though. When I was in the rat race I would dream of having a blank calendar day.

Funny how life works out isn’t it.

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Medical Musings With Friends, my online support forum,  is my main daily focus now (next to my hubby of course).

I love that despite my own health limitations, I can muse daily with others living with chronic illness across the globe. It is such a joy and honour for me to see friendships form and burdens shared as we muse together.

Walking A Fine Line

It is a fine line we walk when living with a chronic disease.

If we are not careful we can become defined as the girl or guy with lupus or multiple sclerosis or rheumatoid arthritis or a rare disease, etc.

We are so much more than our diseases. It’s OK to show others our strength of character, our funny side, our happy side, our lighter side, our talents.

It’s OK to share our hopes and our dreams for the future.

That’s what I love about my forum. I love that the members share the highs and the lows. The challenges and the triumphs.

I love that we laugh together and cry together. I love that we are free to express to each other our deepest thoughts in a way that is raw and real.

We share our love of books, music, movies. We share our faith. We share our hopes and our dreams and when these are crushed, as they often are, we pick each other up.

We help each other re-build their lives with new hopes and dreams.

Climbing Mountains

Most of our members can’t do great “so-called” physical inspiring things like climbing bridges or mountains or running in marathons.

Our members climb mountains daily though.

In the midst of their pain and disability they look after families. They clean a room in their homes. They manage to get showered and dressed on their own. They make it out to a cafe. They comfort another despite their own suffering.

None of these things are easy. Each activity represents Mount Everest.

Our forum members are so inspiring.

Every person, living with a chronic disease, achieves more than they realise, every day.

So if you have a chronic illness and have woken to a “blank calendar day”, remember that your day will be full of climbing mountains.

You will be achieving so much. You are amazing and it’s a privilege to climb alongside you all ❤

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 and 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

A Chronic Illness Conundrum

You know that feeling when you are completing a jigsaw puzzle only to find that a piece is missing?

It’s a devastating moment. Your stomach turns just a little. All that work, all that effort, all that anticipation of a final outcome. A completed picture was the awaiting reward but it’s been snatched away from you!

Trying To Fit The Pieces Of The Puzzle Together

Chronic and complex illness is so often like that. We are given a diagnosis, then another, then another and for some the list continues to grow with every medical appointment. Our medical team try and put the pieces of the puzzle together.

Good progress is made. The puzzle pieces start to fit together. Treatment plans are made and followed with great anticipation that symptoms may reduce, even if a cure is out of reach.

A feeling of hope returns as you feel you are in the driver’s seat navigating the road ahead. Nothing can stop you now.

Nothing except a missing piece of the puzzle.

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A chronic illness condundrm.

A change in symptoms,  a new symptom, a worsening of symptoms.

A knowing feeling that something is not right. A knot begins to form and tighten in your stomach.

Just like finishing that jigsaw puzzle only to find a missing piece.

The Gift That Keeps On Giving

Living with chronic disease is often referred to as the gift that keeps on giving. Labelling it a gift is a stretch at best but it defintiely will keep you on your toes.

I have a worsening of symptoms and new symptoms. My condundrum is do I “watch and wait”? Do I make an appointment to see my GP or one of my Specialists? Do I go to the ER?

It’s a chronic conundrum faced by so many in the chronic illness community. It’s the thing we most dread. We want to keep things moving on an even keel.

We don’t want to face condundrums, neither do we want to be a conundrum to our Drs or our family and friends. We would love to focus on something other than our chronic health but when it’s all encompassing and ever giving, we can’t escape.

The reality is we will often be in this position so we need to find ways to cope.

I don’t have all the answers. I often don’t have any answers but I do like to problem solve and find a way forward.

Finding A Way Out Of The Conundrum

A way out of my chronic conundrum restores peace and hope.

So I have made a plan and taken action to deal with this latest puzzle:

  1. Stay calm – I’m doing this by writing and planning. Works for me!
  2. Make an appointment with my GP;
  3. Make notes for my Orthopaedic Surgeon;
  4. Get organised with xrays and notes for my Physiotherapist and Occupational Therapist;
  5. Don’t change anything to my current treatment plan until I’ve spoken to my medical team;
  6. Rest and prioritise all necesssary tasks;
  7. Watch and wait with some of the new symptoms that require assessing. Discuss referral options to new Specialists if needed with my GP;
  8. Finally…..I’ll go and do something relaxing, knowing that while I haven’t solved the conundrum, I’m back on track and heading in the right direction.

Until the next chronic illness condundrum of course.

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

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

 

 

Sorry, I’m Still Sick

(This is an re-write of an older 2017 post titled ” Hope You’re Feeling Better” )

I love that friends, family and even neighbours often think of me and ask how I am, or say they hope I am feeling better.

It lets me know that I am cared for and not forgotten, even though my disease has pretty much caused me to live the life of a recluse over recent years.

An Unexpected Emotional Response

However, it also conjures an unexpected emotional response in me. A response that I am sure many others with chronic diseases will relate to. It conjures a feeling of guilt.

Why?

I’ve been contemplating that question for a while and I’ve come to the conclusion it’s because I feel like I’m letting everyone down.

People generally like to read a good story with an introduction, a middle with a climax that is often dramatic but has a conclusion with a happy ending.

It’s like that in real life too. If we hear someone is sick we like to hear soon after that they’re better.

If we hear someone has a terminal illness or chronic disease that will progress rather than improve……well, what do you do with that? How do you find the right emotional response to the person living with those circumstances?

The natural response is to feel sadness,  fear or even anger. In some people the response is to withdraw or run from the situation.

How Are You? Any Better?

The chronic disease sufferer, who is so often weighed down by their pain and disease symptoms, can find it hard to decipher why friends and family respond in certain ways to their illness.

Those around us, searching for an emotional, appropriate response to our disease and circumstances, have little choice but to ask,  ” How are you today?” or to say, “I hope you’re feeling better”.

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So Why The Guilt?

I think the guilt felt by the chronic disease sufferer, is rooted in the fact it’s unlikely we are feeling any better than they did yesterday, or the day before.

It’s likely we’ll be on a path of getting progressively worse.

No one wants to hear that and no one wants to say that. It all sounds a little…well, too dismal!

I don’t like giving dismal news so I start to feel bad that I have to. It’s either tell the truth (or a dulled down version) or lie.

I’ve always been such a strong advocate of openness and honesty so, if I did lie, I would still feel overwhelming guilt.

Finding A Place of Understanding

So how do we, the chronic disease sufferer and the caring friend or family member, live happily ever after with a situation that is ongoing and let’s face it, burdensome to everyone.

We just need to keep trying to understand each other. The chronic disease sufferer needs to understand that people really can’t find the right thing to say….. because what can you say?

The caring friend or family member also need to understand that your response may simply be,

” thanks for asking, still no change”

or

” things are getting a little worse”.

Depending on who you are talking to, you may feel comfortable to expand with a few details.

At the end of the day contact with others is so important for our overall wellbeing.

So, my tip is, once that awkward “hope you’re feeling better today” moment is out of the way, simply ask the caring enquirer how they are. That usually helps get a conversation flowing that makes everyone comfortable.

PS: In the spirit of guilt free openess and honesty… I’m not doing all that great physically today but I’m feeling relaxed and hopeful tomorrow will be a little better

Take care

Sam xx

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

I also write @ Blogs by Christian Women

 

Seasonal Musings

I love turning over the calendar at the beginning of a new month. I have a pretty wall calendar in my study just so I can anticipate revealing a new picture on the 1st day.

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It’s a symbolic act in some regards, of saying goodbye to the old month, the good and the bad. I like looking forward with wonder as to what the month ahead will hold. I always hope that it will be a month full of blessings, while realistically praying for strength to handle the difficult days.

March is extra special as it’s the start of my favourite season. In Australia, we look forward to the end of long hot summers and we welcome the cooler Autumn breezes.

My Northern Hemisphere friends are no doubt longing for some sunshine and spring flowers after a bitterly cold winter.

Both seasons herald a welcome change. They are a reminder that nothing is stagnant. Not all changes are welcome though. Life has twists and turns, both good and bad.

Whether we have good health or chronic illness, life has seasons. Things will happen that are not connected with our chronic disease. They are just normal life events.

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However, living with chronic illness adds a complex layer to these normal seasons of life. The good times can seem intensified as we know what it’s like to experience the depth of pain. We so often have to miss out on special events because of our illness, so when life is good, it feels extra good. It can feel euphoric.

Sometimes when life throws curve balls at us (not health related) we can, if we are not careful, make them feel larger than they really are.

We are constantly experiencing pain, fatigue and niggling concern about our health and the impact it will have on our future. This can easily make us less tolerant of even the ordinary unexpected and unwanted life events, that interrupt the smooth flow of our day or week.

An argument with a loved one, the inconvenience of an appliance breaking down, someone on the phone being less than helpful etc, can quickly become catastrophic in the life and mind of those battling chronic disease.

If you are experiencing a season when you feel like everything is against you, just take a step back for a minute. Sit quietly and think about the issue that is distressing you. Is it as bad as you think?

Is it that it just feels like the last straw but in actual fact the main issue is that you are just too tired to deal with it?

By taking time out to stop and think calmly about your difficult day or season, you might surprise yourself and find you are actually able to think of a way to handle it, without it being blown out of proportion. Without it causing you undue health repercussions.

On the flip side, if you are experiencing a season of joy and good times, enjoy every minute. Those times are priceless and deserve to be celebrated, especially for those battling chronic disease.

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I hope and pray this new season brings you much joy, even with the challenges that chronic disease will always bring.

Just remember to try and keep everything in perspective and stop and breathe.

The title of a well known book comes to mind… “Don’t Sweat the Small Stuff”

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

 

My Mini Musings

Over the past couple of weeks I’ve been busy reading and editing some of my older blog posts.

I’m no where near finished but it’s been such a worthwhile exercise so far.

I’ve enjoyed reliving my journey and discovering how much my writing style has changed since I started blogging over 3 years ago.

I’ve also discovered that a few insights, in my older posts relating to my health journey, still really resonated with me today.

I thought they might be worth gathering and sharing as a collection of  “my mini musings”.

I hope they resonate with others living with chronic disease or adjusting to any life changing event.

Feel free to share them individually or as a group.

With love

Sam xx

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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

Musings and Plans

Every Monday I have a segment called “Monday Musings” on my Facebook Forum, Medical Musings with Friends.

The idea is to start the week taking a quiet moment, to think about what lies ahead. We muse about how we are feeling, what we are concerned about, what we are excited about.

Sharing those thoughts with others in a safe place, like an online chronic illness group, is really cathartic. Writing down your thoughts and speaking about them, can help provide clarity in the midst of pain and disease.

Uncertainty often encompasses life at every turn when living with chronic disease. Having friends to turn to, online or otherwise, who are walking in your shoes, can provide so much comfort.

The Chronic Disease Curveball

Sometimes though, when our pain or disease throws us a curveball, it can feel incredibly overwhelming. We can feel anxious and afraid. We often feel isolated as we struggle with worrying symptoms, even though we may be surrounded and supported by friends and loved ones.

All of those feelings are so normal. Partly we feel them because we are experiencing more change. Changes in disease symptoms often results in changing how we need to manage our daily life. Change then causes the grief process to start again.

My pain has escalated to a new level over recent weeks. I know that’s going to happen as my disease progresses. It’s my reality and I can curl up in a ball and give up, or I can take some control over my circumstances.

Like so many of us living with chronic disease, there are often no solutions when my disease progresses, other than making further life changes to accomodate the worsening disability.

I’m a born Leader, planner and organiser, so when changes occur I start automatically thinking about what I can do to accommodate those changes. I was born feet first and my family always joked that I arrived ready for action. That’s not such a bad thing given my life’s circumstances.

The Plan and Review Process

If you’re finding that your disease is worsening and there are little treatment options available, or perhaps you’ve gone into sudden remission, I’d really encourage you to take time to start or review your Chronic Disease Management plan.

If nothing else it will give you a sense of taking some control, in a situation that can feel like a ship in a storm without a captain.

It’s your life, you can be the Captain.

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Your Chronic Disease Management Plan can include whatever you want but as a starting point some key areas to consider are:

□ Activities – What you can do, what do you need help with and what can’t you do?

□ Environment – Is there anything in your home that is impacting your pain/disease and requires changing? (ie: position of items in cupboards or more major household changes)

□ Rest Periods – How often do you need them and when? What impedes you having them and what can you do to fix that?

□ Medical Reviews –  Are you happy with your current medical team? Do you need to make any changes? Are you happy with how often you see them? Do you need to increase or reduce your number of appointments?

□ Leisure -What are the things that help you relax? How can you make sure you do more of these things?

□ Family / Friends – Setting boundaries. How often can you cope with visitors etc? Do you need to remove toxic relationships?

□ Goals – Are there things you really want to achieve (eg: getting out for coffee or maybe a travel goal) How will you do that? What support will you need?

You get the idea. Hopefully these suggestions will get you started or help you update your existing plan. You’ll definitely come up with other things as you start thinking about your own life.

Taking Time to Review

I’m taking time this week to re-evaluate my activities. I’m reviewing what I do now, what can I do differently and asking myself what shouldn’t I be doing at all?

That last question will be the hardest as I love what I’m doing now but I know I have to find more time to rest my body and my mind.

I’ll let you know how I get on with that process. Might take me a little while to work through it 😊.💞

Love & hugs
Sam xx

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

I also write @ Blogs by Christian Women