A Spoonful of Strength

Sometimes, all I need is a spoonful of strength.

Living with a chronic disease reminds me of some of my previous plane trips. I’d start off full of nervous anticipation with a little fear of what lay ahead once on board. There were some smooth passages and then all of a sudden we’d hit almighty turbulence.

Chronic Illness Turbulence

Today I hit “chronic illness” turbulence. The less pleasant part of my health journey.

It’s not just one thing, it’s a culmination of health events which have created cyclonic circumstances.

The consistency of bone pain, worsening of avascular necrosis in my right hip, new stress fractures in my pelvis and feet, all add up. They are contributing to a fatigue level that is making me feel like I’m drowning in fog.

My non-union femur constantly has muscle bleeds. I literally can’t lift my left leg off the floor when this happens and I need help with everything. That’s painful turbulence of the highest degree.

Scans and X-rays on my leg have revealed I now have bone growing into my muscles. It’s apparently a complication of my rare bone disease and my body trying to heal my broken femur. It’s getting it all wrong.

So I’m experiencing what can best be described as “chronic illness turbulence”. I’m hanging on tightly through this part of the journey.

The outlook is…..

More turbulence ahead is imminent!

The words of a favorite hymn echo in my mind and provide me with a strong anchor as I sing silently and pray for strength:

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

(Priscilla J Owens)

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Calming the Storm

This chronic disease onslaught can be all too much to comprehend at times and I need to try to calm the storm. I need to quieten my mind and body.

While treading water, after what feels like my chronic illness flight has crashed into the deep-sea, I’m beginning to think upon things that are certain.

It’s the certainties in life that restore my calm. Without them, I would undoubtedly drown.

My certainties each and every day are:

  1.  My faith;
  2. I’ve got through the turbulence before;
  3. My husband is here by my side;
  4. My medical team is so supportive and are working together to provide me with the best care possible;
  5. It could be worse…it could always be worse;
  6. I understand why my leg pain is worsening and I know to lower my expectations of my physical capabilities even further;

I know, without a shadow of a doubt, my strict daily rest patterns are integral to reducing the intensity of muscle pain in my legs and to prevent bleeds. Note to self….do not try to miss them!!

A Spoonful of Strength

I’ve realized through my chronic illness journey and through journeying with others, who are living daily with the uncertainties of chronic illness, that sometimes we don’t need the turbulence to disappear completely to be happy and at peace.

Sometimes, all we need is a spoonful of strength, found in the things that are our anchors in life.

Those places and moments where we find certainty that the turbulence will settle and calm will return, they are the things that strengthen our hearts and minds.

My faith in God continues to encourage me through the calm and the turbulent passages of my health journey.

As I pray for strength and comfort, my answer often comes in simple ways.

Sometimes it’s via a friend sending an encouraging message when I least expect it and at just the right moment. God’s perfect timing still never ceases to amaze me.

Sometimes it’s a song, playing on my Spotify playlist, that is just perfect for my situation and immediately lifts me.

Whatever turbulence you are journeying through, whether loss, health, work or family, look for a spoonful of strength.

Our trials will not always be removed entirely. One thing I am certain of is that God will give us the strength we need in the storms of life. We just need to ask, listen and look for the answer.

A spoonful of strength gives me the resolve to hope that tomorrow will be a better day.

Yes, my soul, find rest in God;
    my hope comes from him.
Truly he is my rock and my salvation;
    he is my fortress, I will not be shaken. Psalm 62: 5 -8 (NIV)

Take care

Sam xx

 

This article was first published on Blogs by Christian Women

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

 

An Open Letter from a Husband Concerning His Chronically Ill Wife

A forum member on my FB group,  Medical Musings with Friends, posted an “open letter” that her husband recently wrote. It is so moving for anyone who is the primary caregiver for their loved one. I thank Him for giving me permission to publish it.

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To Whom It May Concern

My wife was recently placed on long-term disability from work due to a string of illnesses – including lupus, shortness of breath, and heart problems. Her body temperature control is broken making her hot a lot of the time.

What has followed is over a year of chronic physical pain, sometimes keeping Her bound to her bed for the day. As her primary caregiver, I had the feeling of helplessness when I realized that her conditions simply wouldn’t go away.

According to the Canadian Public Health Agency, over half of Canadians deal with chronic illness and the majority of the population have at least one factor that puts them at risk for chronic disease. For married individuals suffering with chronic illness, their spouse becomes the primary caregiver, homemaker and breadwinner. More often than not, though, all the caregiving spouse can do is be present and just wait by their loved one’s side.

Because things don’t disappear within a few days, it gives me time to exercise my ‘coping muscles’ every day, knowing that, apart from a miracle, things are never going to change. As my wife’s primary caregiver I understand the importance of compartmentalizing my emotions surrounding Her health so that I can best serve her needs.  I’ve been crippled emotionally thinking about how she is feeling.

We try not to let Her illnesses rule our home lives too much, it’s not uncommon for resentment to grow in marriage relationships where one spouse is suffering from chronic illness. Spousal caregiving has physical implications as well. A report from the Canadian Academy of Health Sciences claims that caring for chronically ill loved ones also impacts the health of the caregivers themselves, including low immune systems, slow wound healing and high blood pressure. People overestimate their abilities and underestimate their stress levels. It’s  recommended that care-giving spouses have regular medical checkups, specifically regarding their cortisol levels so as to ensure they have enough energy to administer care to their spouse and themselves. If your cortisol levels are too high, you’re going to burn out.

Support groups and counselling, are invaluable examples of self-care for the care-giving spouse. Regular support groups are very practical. When people can address these emotions in a safe place, it helps mitigate any resentment.

The journey to healing has largely been due to accepting that you can’t change the circumstances.  In order to be in control, I had to relinquish the control I thought I had over the situation. It took a lot of the pressure off, realizing that, in any case, marriage requires giving all you can possibly give – even if your spouse doesn’t feel able to offer as much in return.

The sooner one learns marriage is not 50/50 but rather 100/100, the easier things will be. I didn’t commit to being a husband for my wife only 50 per cent of the time. I promised I would be there whenever she needed me and not only when it suited me.

Still, that doesn’t always make it easy.

Each morning, the first thought that goes through my head is, how bad is my wife’s pain today?

 

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

To Do, Or Not To Do?…..That Is The Real Question

How many times have you written a “To Do List” this week?

How many times have you looked at this list and felt like it’s an impossible dream?

How many times have you felt useless because you’ve only ticked off a few items?

How many times have you looked at the list and felt like it’s been taunting you and trying to coax you into doing more than you’re physically able?

How many times has the list been thrown in the rubbish in disgust and despair?

 

Ok, Enough Questions…Let’s Deal With This “To Do List” Issue

Firstly, I do need to ask one more question. Sorry about that!

Why? Why do we do this to ourselves?

We all know when we live with chronic illness, pacing should be our greatest priority. It’s one of our key chronic illness management tools.

As soon as we add item after item to a “to do list”, we start placing undue pressure on ourselves. We set ourselves up for failure.

 

I Love A List – Always Have

I’m a bit of a “professional” list maker. I always have been since I was a primary school student. My Management career did nothing to break my list making passion. In fact it was one of the keys to my success and my list making behaviour was endorsed.

Imagine the difficulty I faced, of suddenly finding myself in a situation of being diagnosed with a rare disease. A disease that was to become as unpredictable as the weather. Even more unpredictable than that really (if possible!)

I can’t tell from one day to the next if I’ll be able to sit up for 2 hours straight, let alone achieve a list with 3 items on it.

Something I love to do and is considered a good life discipline, is now something that can so quickly become my undoing.

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So, To Do Or Not To Do?

Despite the risk of failure, I still say “To Do”.

A list helps you keep tasks on track and is a good organisational tool.

There is a big “however” coming now.

For those of us with Chronic Illness, we need to be realistic about our capabilities. We need to ensure that we don’t do anything that will further compromise our health.

This is actually where a “to do list” has advantages for us if we use it correctly.

So here’s a few of my tips for making a list work with your chronic illness, rather than against it:

  • It doesn’t have to be huge. It can have only one item on it per day. Make it something you really want to achieve. If at the end of the day you can cross off that one item you will get a wonderful feeling of accomplishment.

 

  • Use Your Phone Calendar. My “To Do List” is on the agenda display in my phone calendar. It makes it easy to juggle tasks around and I can quickly see each morning what I want to achieve and what I need to achieve.

 

  • Needs versus Wants. I like to itemise the things I really need to do (eg; appointments, cleaning tasks, online food shop, rest time) versus what I want to do (write blog, sort out wardrobe). That way I can ensure I’m prioritising my pacing for the important tasks. If I find I’m having a better health day, I can go ahead and do a “want” task.

Note: I included rest time as a “need to do”. This is so important to physically add to your “to do list” daily. Self care is essential if you want to have a hope of achieving anything else.

 

  • “Want To Do List Days” are important. It can’t all be about what you have to do. Some days just need to be about fun. Doing things you love. For me that’s writing. It’s something I can do with my physical disability and it’s really important to me. So I make sure I always factor in this want around the tasks I need to do.

 

You’re The “To Do List” Author

At the end of the day, this is your personal list. You can add and delete items as you like.

You are the author. No one else, apart from maybe your medical team who can sometimes dictate appointment times.

If you decide to change the story for the day because the “plot” needs a re-think , go right ahead. Don’t feel guilty about it either. Listen to your body. Be guided by it.

We need to make life as pleasant and as easy as possible for ourselves. Let’s face it, most days are a physical battle with pain and fatigue and a myriad of other symptoms. Why on earth would we choose to make it any harder with impossible lists.

Make a list, make it short, make it fun and take great glee in ticking off an item.

Remember to celebrate each time you strike an item off a list. Even if the list only had one item you should still throw a little party.

You did it! What an achievement. I hope you’re smiling as I’m smiling for you.

To do or not do to?….

I say……. “To do”, one item at a time, one day at a time.

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 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

 

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

Sleep and Chronic Pain – Is That Even Possible?

I can cope with most things about my disability. I’m not saying it’s easy. It’s far from easy but I have a toolkit of chronic disease management strategies, I’ve written about in the past, that help me on a daily basis……(Musings and Plans and Body Behaving Badly)

My pain is unrelenting during the day but I can find things to keep my mind occupied, to distract me as much as possible.

Those Early Hours Of The Morning Are Just Plain Hard

When pain overtakes my body in the early hours of the morning it’s just plain hard. I simply can’t sugarcoat night time pain with positive throw away lines.

Tossing and turning makes my legs hurt even more than usual and I’m acutely aware I’m disturbing my husband. That’s the last thing I want to do. He needs his sleep. He does so much for me during the day that I feel it’s unfair to disturb him at night.

Sure, he could sleep in the guest room but that’s just not us. Many couples do that and it makes perfect sense. Some couples literally don’t have a choice as different types of diseases make sharing a bed impossible. That’s really tough.

In our situation, for as long as we can, my husband and I are committed to staying side by side to fight this chronic illness battle.  For now that includes still sleeping in the same bed.

The only time we’ve slept apart is if one of us has been in hospital or when I was working and was away at a conference.

That’s across nearly 23 years of marriage.

Navigating the Night Time Pain

On bad nights I usually wake at 2am. So, I make my way downstairs. Sounds easy but I have to navigate down the long hall to the staircase using my crutches. I then use the remote to get the stairlift to come up the stairs from its parking bay downstairs. I carefully climb on it and then once at the bottom, struggle to the kitchen to make a much needed cuppa.

I carefully carry the cup of tea in one hand, using only one crutch in my other hand, to move to my lounge chair. I really need two crutches so it’s a delicate operation.

Finally I take an extra pain killer.

The thought of this process often makes me just lie in bed in pain on bad nights, rather than going to all this effort but other nights the pain wins. I have to break the cycle and get up and move.

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It’s Not My Fault, It’s Not Your Fault

As I feel the extra pain killer starting to work and the warm drink bringing a feeling of comfort, I begin to relax.

I know I am going to be a cot case tomorrow. Actually a bad night like this has consequences that carry over a number of days. A harsh reality of living with a chronic disease.

I always want to find a reason for having a rough night. My mind searches for answers.

I must have done too much.

I haven’t rested enough.

A whole list runs through my head finding reasons to blame myself for my soaring pain levels.

In the stillness of my lounge room with the clock ticking for company and otherwise silence surrounding me, I eventually settle my thoughts.

I remind myself that I haven’t done anything to cause this disease to attack my body. I have spent my days balancing rest and activity.

I am managing this the best way I can. This is not my fault!

Sleepless nights and unrelenting pain are not the fault of the chronic illness sufferer. We have to try and live each day the best we can. We have to move our bodies. We even have to stretch our limits from time to time to achieve an important goal.

It’s not our fault. It’s our disease causing the pain and the sleepless nights.

What we need are strategies to deal with yet another part of living with chronic disease

Sleepless Nights Strategies

There are some really great “Good Sleep” resources online. This one is from the Macquarie Universities Chronic Conditions Course and it’s my favourite: Good Sleep Guide

Sleepless nights will happen from time to time. Accepting that, not fighting it, helps me relax and find a place of peace. That helps sleep to eventually return.

Some of my other tips for those disturbed nights (remembering that they are not your fault) include:

  • Get up when pain is overwhelming. Breaking the tossing and turning cycle really helps;
  • Make a hot drink and if you can, take some break through pain medication (speak to your Dr about this);
  • Don’t put a time limit on when you should return to bed. Listen to your body. When you start to feel relaxed and your eyes want to close, it’s time to try again.
  • If you go back to bed and you still can’t sleep, just enjoy resting there if your pain is manageable. If your pain is too distracting, get up again and relax in your favourite chair. You might nod off there and that’s fine so long as you are in a position that supports your body correctly.
  • When my pain is really bad at night I have to distract myself, so I’ll pick up my phone and write a blog post. Or I’ll reach out to someone on my Facebook forum.
  • Online support groups are excellent in the middle of the night if you need to debrief with someone who really understands. My forum Medical Musings with Friends , is an international group so there is always someone around to chat with.
  • The next day try and maintain your normal routine.
  • Make sure you stick to your daily rest schedule but don’t try and catchup on sleep. In my experience I usually sleep like a baby the following night due to exhaustion. It also always seems to be a restorative sleep.

So Is Sleep and Chronic Pain/Illness Possible?

Yes, I think so but there will be nights, even seasons of nights, when sleep will be disturbed. Try not to stress when the sleepless night arrives.

With some solid strategies, a settled mind and peaceful heart (helped along with meds and a hot drink) will eventuate. Pain will begin to subside enough to allow that place of slumber to return.

On those occasions when it doesn’t…..we might just find ourselves chatting online.

Sleep well

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 Good….My Body, Not So Much

As a little girl, around the age of 5 or 6, my parents taught me how to answer our home phone.

I can still remember my answering script to this day. I would eagerly rush to the ringing phone and in my brightest, best grown up voice possible,  I would say:

” Hello, 1234567, can I help you?”

The caller inevitably asked:

” Is your Mum or Dad there?

My scripted response was:

” Yes, I’ll just get them, can I please ask who’s calling?”

My decorum and professionalism, at that young age, then departed as I ran excitedly through the house shouting:

” Mum, Dad, phone call…Mr/Mrs xx is on the phone”

Oh well, I’m sure the caller had a good chuckle.

The Professional Approach

That phone answering training as a little girl, really paved the way for how I would communicate in adult life.

In my business career the emphasis on professionalism and excellent customer service, further instilled that need to present oneself in an upbeat, positive manner.

Add in my own natural positive disposition and my default mode, no matter my circumstances, is to sound bright, upbeat and happy.

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The Real Picture

The other day my Home Care Liaison Manager phoned me to book some allied service home visits…Physio, OT, Podiatrist etc

I was lying on the bed as the phone was ringing, writhing in pain. My rare disease was doing its best to break me. New stress fractures in my pelvis, ankle and feet, on top of my existing non-union femur break and Rheumatoid Arthritis were all working against me.

On a good day my pain level is 5/10. When I’m waiting for my pain meds to kick in, the pain level is around 9//10.

I had only just swallowed my afternoon medication as the phone began to ring.

Thankfully it was right next to me on the bed. It’s really like an additional limb, a lifeline that I’m never without.

I was pale and feeling distressed with my pain levels, yet this is how I answered the phone:

” Sam Moss, Can I Help you?”…. (Insert smiling face and cheerful voice)

” Hi Sam, It’s Mandy, how are you?”

Hi Mandy, I’m good, how are you?”

I’m Good, How Are You?

There we have it! I could hear these words spouting out of my mouth.

” I’m good”

I could feel myself screaming internally……”No, you’re not good. You’re far from good. You can hardly breath from the pain and you can’t move”

The really stupid thing is that my caller knows that. There was no need for me to put on a brave front. No need to pretend that all was perfect.

So Why Did I Say ” I’m Good”?

I didn’t sleep well last night because of my pain and in the early hours of the morning I began asking myself this question.

My answer is two-fold:

  1. Conditioning – I’ve been trained from an early age to answer the phone in a professional manner and my career endorsed that model.
  2. Desire – I want to be that healthy person and in many regards I still see myself like that. Mentally, I’m good. Physically….not so much!

Body and Soul

There is a beautiful old hymn called ” It is well with my Soul”.

The first verse sums up exactly what I mean when I say “I’m Good…my body, not so much”.

When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to know
It is well, it is well, with my soul.

As a Christian, my faith helps me experience that sense of peace and it is well with my soul….no matter my circumstances.

My faith also convicts me that I need to be more honest and precise when talking to people about how I am. To say “I’m good”, is far from true.

If I said “It is well with my soul”, while accurate, it would sound pious and a bit ambiguous. Not really helpful for me or the caller.

So What Can I Say On The Phone?

When I’m talking to someone face to face it’s pretty obvious that I’m in pain. My eyes give it away. I’m constantly wriggling to try to get comfortable. My crutches are my constant companions and when I do walk I am clearly crippled.

The phone is so different though. Those visual signs just aren’t there.

So, I’ve decided the best approach for me, when asked how I am on the phone, is to simply say;

” I’m good….my body , not so much”

It’s honest, precise and if I need to expand then it opens an opportunity to do that.

Chronic Illness is difficult enough without us making it more complicated.

Keeping our responses to simple questions, short, sweet and honest, not only helps us manage our diseases better, it ultimately helps those who live and work with us and who care for us.

It helps others better understand our needs and situation.

So today if you ask me how I am, I can pretty much guarantee my response will be;

” I’m good….my body, not so much”

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.

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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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