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.

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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

 

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My Writing Year In Review

As Christmas and year end comes around, I’m in a reflective mood.

It’s been a great year for me from a writing perspective. I’ve enjoyed networking with other bloggers within the chronic illness blogging community.

I’ve also connected this year outside of the chronic illness world, with lovely Christian women through Grace Girls and the Salt and Light linkup group.

I’ve enjoyed sharing my story with others. Hopefully through my own experience of living with a chronic, debilitating disease, I’ve been able to impart some tips showing ways to live the best life possible, despite the restrictions and challenges of pain and disability.

As far as my blog is concerned, I thought I’d round off the year by sharing with you the 5 top posts, according to my readers.

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So Without Further Ado…

Here are the posts my readers likefld the best throughout 2018:

Musings And Plans

Chronic Illness Catastrophe Days

I Should, I Better, I Have To….No You Really Don’t

Embracing Chronic Illness In A Deliberate Way

Finding A Peaceful Kind Of Happiness In A Chronic Illness Life

Plus Two Of My Personal Favourites

These last two are special to me. The first one acknowledges my beautiful husband and his care for me.

The second one is on the subject of healing and how this can be found, not necessarily in a physical sense, but in finding strength to live well with your chronic disease.

Remember To Care For Our Carers…..They Are Hurting Too

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

The Most Popular “Mighty” Article

I’ve been writing for The Mighty for nearly two years now. Over that time I’ve written over 40 articles, many of them originate from a blog post.

At the beginning of the year I wrote a love letter to my amazing husband which was published by The Mighty. They continue to share it on their Facebook page and each time they do, the response is overwhelming.

This will always be my most favourite written piece and I couldn’t round off the year without sharing it here:

To The Amazing Husband Behind This Chronically Ill Wife

Thank You So Much

I want to thank you, my readers, for your love, encouragement and support during 2018. I have so enjoyed reading your comments and making new friends along the way.

I wish you and your loved ones a very happy and relaxed Christmas and I look forward to sharing more with you in 2019 💗

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

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A Day Of Pondering Is Good For The Mind Body And Soul

Inspirational Quotes surround us in today’s world of Facebook, Twitter, Pinterest and Instagram. Throw away lines that are designed to both challenge and motivate us.

Do they or are we overwhelmed by the many thoughts, sayings, likes and shares that crowd our day?

Do we really take time to reflect and ponder and listen to our own thoughts?

Do we quieten our minds enough to work out what we really feel, what we really believe?

A Day Of Pondering

I’m pondering today, partly because I’m battling severe pain and partly because I need quietness to listen to my own heart, my own thoughts and to just be.

I’ve just spent 8 days in hospital dealing with complications of severe lumbar spinal stenosis. The journey isn’t over but at the moment I’m just exhausted and I need peace, perfect peace.

Hospitals are full of noise. Machines beeping, Nurses hustling and bustling along corridors, or prodding you awake at 1am to take your blood pressure.

Specialists visiting you just when you had finally managed to make it to the bathroom or were about to enjoy a meal.

Texts, phone calls, TV’s streaming different shows from different rooms. Nurse buzzers going off left, right and centre.

Blood tests being taken when least expected. Catering staff taking orders and delivering food.

Being wheeled through the hospital on your bed, to Radiology for scans and x-rays.

Cleaners coming into your room to dust and vacuum, just when you thought you were finally about to get some rest.

Noise,  noise, noise!

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I Need Quietness And Solitude…Now!!

Quietness and solitude is what’s required to regroup, recharge and renew my physical and mental strength after any lengthy hospital stay.

So as I ponder, I’ve been looking at inspirational quotes for my online support group, Medical Musings With Friends.

The more of them I read the more I feel a growing sense of emptiness. So many  lack substance and that’s ok for a light-hearted pick me up kind of day, when a throwaway line will make you smile and say “yeah, I like that”.

Today is not that kind of day. Today I need more. Today I need to go where I know I will find real strength. Where my faith will be confirmed, where my soul will be comforted.

I have many favourite verses in the Bible that keep me going through the good days, the bad days and the in between days.

2 Corinthians 4 v 17 – 18

For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

Ahhh….as I read those words and many like them I begin to relax. There is a much bigger picture for my life than my current circumstances.

The noise begins to disappear. My mind is beginning to function again. My thoughts are starting to form with some clarity. My body may still be weak and sore but my soul is being renewed.

As my soul is revitalised, my mind relaxes and my pain is better managed.

Time out to ponder is definitely good for the mind, body and soul.

It is good to be reminded that God has a plan for my life. A plan full of hope and a future.

When true inspiration is needed I know where to go! I know where to find perfect peace and solitude.

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 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

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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.

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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

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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.

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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

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WEGO Health Award 2018 Nominee

 

Remember to Care For Our Carers -They Are Hurting Too!

Many people with Chronic Illness require full time Carers. Often that role is filled by loved ones. Our husband’s, wives, life partners, siblings, parents, children, even grandparents.

Watching a loved one suffer is just so confronting. No one wants to see someone writhing in pain or watch the person they’re caring for lose their ability to do basic tasks.

It hurts our Carers as much as it hurts us.

Our Carer’s Feel Our Pain Deeply

My health has deteriorated significantly over the past month. My husband, my beautiful carer, has been my rock. We both know to expect this progression of my disease and we are pretty good at managing the fallout of worsening symptoms.

Does that knowledge and preparation make it easier? Yes a little but it doesn’t make us totally immune from the emotions and reactions that come with change, pain and the unrelenting symptoms of chronic illness in general.

This reality was written all over my husband’s face today. He’s shattered. Exhausted. Worried.

He’s hurting too!

My pain is his pain.

He is by my side for every blood test, Specialist appointment, Physio appointment, medical emergency. He helps me in disability toilets to navigate on crutches or with my walker while I juggle dealing with a stoma change or an unexpected issue. He experiences the entire roller coaster ride of my chronic disease.

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I was lying on the bed this morning after breakfast, trying to gain some energy before attempting to get dressed for the day.

My husband came in the bedroom and stood by the bed looking at me. He looked so concerned. I asked him if he was ok? He said he just hates that my body is so horrible to me. He said he feels my pain so deeply.

At night he wakes up to check I’m still alive. He can hear me groaning in my sleep from my pain and he worries my body will just give up.

I had no idea he did that. I can’t tell you how much that means to me. I know it also means his sleep is so disturbed and he is getting more and more tired.

So How Can We Help Our Carers?

Sometimes we need to take off our “Chronic Illness Hat” and put on our “Carer’s Hat”.

So what does that mean? How can we do that when our disease is all-consuming.

I’ve found a number of simple ways, over the past four years, to let my husband know I appreciate him by becoming his “Carer” at times during each day.

Here’s a few of my tips:

  • Stop, Ask, Listen – A pretty basic starting point. At least three times a day I will stop whatever I’m focused on and check on my husband. I’ll ask simple leading questions like, “Are you ok?” or “What are you thinking?”. Asking is one thing but listening, really listening to the answer, is so important. The answer could be a trigger to show you how to care better. Perhaps something in the day’s routine needs changing to accommodate your Carer’s needs. If you don’t ask you’ll never know.

 

  • Treat Your Carer – I’m very limited in what I can physically do but there are some tasks I’m determined to hang on to so I take some pressure off my husband. Things like cleaning up after breakfast. Making him a morning coffee and afternoon cuppa. He still has to carry everything to the lounge room for me but he loves sitting in our kitchen chair watching me make a cuppa for us both. It reminds him of his wife of old and he feels cared for, especially because he knows it’s such a huge effort for me physically. There are other things I do too but it’s important to find things that work for you and your Carer.

 

  • Do I Really Need Help?  – This is a really important question. Sometimes I will stop myself as I begin to ask for help. It’s not that I don’t need the help but I’ve learned if I take a moment to think through what I’m doing, I can actually figure out a way to do it for myself. That’s good for me and my husband. I feel accomplished and he gets the gift of time!

 

  • Time Out – Your Carer needs time away from you. Time on their own to pursue a hobby or get some exercise. In our case my husband can’t leave me for more than a couple of hours a day but it’s so important he does. He has some tasks he enjoys at home like working on projects in the garage or gardening. He can be in the garage or garden as long as he likes as we have an intercom system if I need to reach him. It’s important though that he gets away from the house regularly for a break, so he goes for a daily walk while I have my morning rest. He knows I’m safe on the bed and he can relax and enjoy some exercise walking along the bay or the canal. He enjoys taking photos to bring back to share with me which I absolutely love. He also goes into town every afternoon to pick up our mail and pick up any shopping we might need, like bread and milk. He’s well known in our little town and he enjoys chatting with the shopkeepers. It’s important social interaction for him. I feel I know them too as he returns to tell me their news.

 

  • Don’t Over Dramatise – Chronic Illness can be scary and without realising it we can quickly make things sound and seem much worse than they are. That just adds to your Carer’s concerns. Take a deep breath and try to calmly explain that you have a new or worsening symptom. We have a 5 day rule generally for this scenario. If things don’t improve we’ll seek medical attention after that period. We also have an agreement if I calmly say I need an ambulance, my husband knows to ask a few questions and then ring 000.

 

  • Most Importantly  – Say Thank you! – Sounds so simple doesn’t it. Do you do it regularly? A simple “Thank you” can make all the difference. I know when I grab my husband’s hand, say “I love you and thank you”,  after he has cared for me in a practical sense, it creates a special moment. The stress drops from his face and we often end up laughing about the scenario we’ve just dealt with. It’s  a huge release for both of us.

What Can You Do For Your Carer?

My tip headings are designed to help you think about what you can do to support your Carer. In what ways can you become their Carer each day?

It will be a different approach for everyone as disabilities come with their own unique challenges.

Don’t presume you know what your Carer needs. A good starting point might be to let your Carer know you would like a “Caring Meeting” with them. Let them know this meeting is to discuss their needs and what you can do to support them in their role as your Carer.

It really is so important to care for our Carers. Their needs are real and they are hurting too.

Take care

Sam xx

Rather, in humility value others above yourselves, not looking to your own interests but each of you to the interests of the other

Phillipians 2 v 3 -4

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

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A Cheerful Approach To A Chronic Situation

 

A cheerful look brings joy to the heart, and good news health to the bones. Proverbs 15:30

It’s a gorgeous morning. The sun is shining, the birds are singing.

I can hear children playing in the local schoolyard and a cool gentle breeze is blowing through my bedroom window.

I’m resting on my bed in the hope that my broken bones will soon cease screaming at me. Pain meds will take the edge off eventually and I’ll be able to stand long enough to sort out my stoma and get dressed for the day.

Sometimes You Just Have To Laugh

I’m not going anywhere today. I am pretty much housebound every day. Despite that I still like to dress as if I have something special to do.

Smart casual is my style…or it is now. It used to be corporate suits with high-heeled shoes. I miss that but I quite like my new wardrobe.

Everything has elasticated waists for comfort and ease of wear, plus that works better sitting over my stoma. I like slightly fitted, tunic style tops over 3/4 length bengaline pants. Both have to easily pull on and off and be made of slightly stretchy material to allow me to move freely.

The pants hug my legs a little, as this provides my broken bones extra support when I stand. A bit like bandages. So there is a slight method to my madness of getting dressed like this each day.

I’ve learned the hard way when it’s come to reinventing my wardrobe. My husband and I have been known to cut me out of tops that haven’t stretched, as I couldn’t pull my arms in the right direction to get out of them.

Sad….but oh so funny. On those occasions, through tears of laughter, I’ve managed to give my husband clear cutting directions while I’ve been stuck in the top. A great trust exercise!! Thankfully no one has been harmed during such a procedure. His handiwork has been so good, after each “surgical removal”, I’ve been able to turn the top into a jacket. Bonus!

You really do just have to sit back and laugh sometimes at such a ludicrous  situation.

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Letting A Cheerful Heart Emerge

Today and everyday I’m enjoying what I can do, rather than thinking about the things I can’t do.

It’s not easy.

A concerted effort over time was needed to change my mindset but it was well worth the effort. It’s always worth the effort.

That moment when the focus shifts to the possible, rather than looking at the impossible, is a life changing moment. It’s the moment a cheerful heart has room to emerge.

Don’t get me wrong, dreaming of the impossible, holding onto hopes and dreams, believing they can happen, is also important at times.

But when the very basics of life are verging on the impossible every day, a dose of reality and being grateful for what you can do, is so important.

A Chronic Situation

I’ve had a really tough few months with some bad news on the health front.

Among other things I’ve recently been diagnosed with Gastroparesis. I’ve also recently been reminded by my medical team, my rare bone disease is progressing and there is no treatment and no cure.

I’ve been reminded no further surgery can even be considered as I am such a high risk for permanent complications or worse.

I’ve been reminded by my Orthopaedic Specialist, my bone graft in 2016 just dissolved in a month as if it never happened. We are dealing with a rare complex disease that has a mind of it’s own. It’s not following any rules of medical logic.

My left femur is still well and truly broken nearly 4 years on from the initial break. It’s now classified as a permanent break. With the progression of my disease, my body is affected from head to toe with various ongoing fractures and muscular atrophy.

I can’t sleep or sit comfortably. Getting in and out of chairs or the car or any movement at all really, causes excruciating pain resulting in debilitating fatigue.

Pain medication only takes the edge off at best. I could increase the medication but it would completely reduce my ability to write, think and support others through my online forum. I would end up both physically and mentally disabled and that’s just not worth it.

It’s a chronic situation and one that requires me to make difficult choices to ensure I am living the best life possible.

The Best Medicine

I’ve needed some encouragement over the past few weeks. It’s can be a bit hard to come by when feeling so overwhelmed with pain and disease.

When the punches keep coming an encouraging word means so much, especially when you are really limited in what you can do.

Encouragement can come from friends and family, even strangers, or from something you’ve read.

A cheerful look brings joy to the heart, and good news health to the bones. Proverbs 15:30

This little proverb was on my calendar and it reminded me how much a cheerful heart really is the best medicine.

It encouraged me and confirmed I am on the right track when I focus on helping others, encouraging others.

I need to keep surrounding myself with things that encourage me and make me happy, so that I’m able to bring ongoing cheer to others.

It’s good medicine to do that. According to the Proverb, it even brings good health to the bones to give a cheerful look!!

So why are my bones so bad you may ask, especially those of you who know me well and know I give cheerful looks constantly?

Well, I don’t think it’s supposed to be literal. It means to give a cheerful look or to be cheerful, gives you a sense of well-being. When battling a chronic disease or dealing with any difficult chapter in your life, that sense of well being is exactly what is needed to help sustain you.

That being said, I did smile and felt very encouraged that the Proverb says “good news brings health to the bones”. A sense of hope flooded my soul and that’s a good thing. We all need hope and as a Christian, I believe and know that my seemingly hopeless situation is well and truly in God’s hands.

If God wants to send me “good news that will bring health to my bones”, then I believe that is absolutely possible.

In fact I do receive the gift of “good health” every day. Each encouraging interaction I have with others or each time I provide encouragement, I have a greater sense of well-being.

Without the good news of a cure or treatment, I am resolved to remain working on having a cheerful heart. It does make a difference to my overall well-being.

Giving cheerful looks and encouraging words to others, truly is good medicine.

Take care

Sam x

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

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WEGO Health Award 2018 Nominee