Pain

Shining a Light on Living with Chronic Pain

~ Sam ~ 5 Comments

Unrelenting levels of pain, excruciating pain, day in day out is isolating, exhausting. It’s so hard to describe to others who have not experienced this kind of life altering agony.

I know there are so many people who suffer enormous pain each and every day, who perhaps can’t find their voice to explain it or to describe the impact on their lives. This is my attempt at being their voice.

Surgeon’s Warning

My Surgeon warned me that my non union femur would continue to become more painful the longer it stayed broken. Every surgery to try to encourage healing has failed due to my rare bone disease working against the healing process. It’s now caused bone to grow in my muscles and I have constant muscle bleeds into my femur.

It’s been 4 years with no significant healing. My Surgeon has tried every possible surgical intervention to encourage healing. All have failed. The first attempt at bone grafting just saw my bone disease dissolve the graft. My Medical team couldn’t believe it.

My bone disease is now attacking my spine. I have severe spinal stenosis with spinal cord compression at L4/L5 and degeneration and sclerosis of the spine  from C2 to S1. It’s a mess, despite surgical intervention. My feet continue to constantly fracture along with hairline stress fractures in my pelvis, collar bone and ribs. The pain from all off this combined is unbelievable.

How Can You Be Cheerful?

I am often asked how do I manage my pain? How do I sound so cheerful? Of course there is always the comment, “You don’t look sick, no one would ever know”

Hmmmm…. I think maybe they would know if they could see me in the privacy of my home! It’s not until the afternoon I resemble anything that would be considered “normal”.

So how am I managing my pain at the moment? Truthfully, not very well. It is the worst it’s ever been as the non union femur and spinal stenosis keep me at extreme levels of pain.

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A Peek Through My Window

I thought I’d share a look through my window, into my average day in the hope that others, battling chronic pain and disease, may feel less alone:

  1. Wake up around 6.30am, from a generally broken nights sleep;
  2. Take pills before I try to get out of bed.
    Crutches await my descent from my bed….the first effort to get out always fails. I just can’t weight bear until the pills help a little. My back often paralyses my right leg and I simply can’t move until anti inflammatories help take the pressure off my spine. When I first get up I only get as far as the ensuite and then straight back to bed;
  3. I have a stair lift to eventually get me downstairs but my husband often brings our breakfast upstairs on a tray if I can’t make it.  We watch the morning news and chat together. I also check in on my online support forum, emails and messages;
  4. I take my second set of morning pills with food. These help but they fatigue me for the first 2 hours of the day making it even harder to coordinate movement;
  5. I rarely cry. I don’t feel sorry for myself. I’ve become used to my circumstances, although I still make plans in my head of all I’d like to do during the day, knowing that I’ll be eliminating items from that list constantly. Staying perfectly still the leg hurts but it’s a duller pain. The slightest movement and it’s like I’ve broken it all over again. Fractured feet and stress fractures in the opposite leg add to my overall disability. The stenosis is by far the most crippling. Only lying down brings any kind of comfortable relief;
  6. I’m determined, so I eventually slowly slide out of bed and I negotiate each step carefully down the long passageway to my stair lift. Every step is like a stake going through my non union leg.
  7. I make it downstairs, make it to my armchair and need coffee. I love my morning coffee. I savour it and I celebrate each morning the fact that I actually made it downstairs.
  8. I come down in my dressing gown as I have no energy to get dressed just yet. I will eventually return upstairs later to get ready for the day. I leave showering until the evening before bed.
  9. I want to run around and stack the dishwasher, dust the furniture, get dressed and do my hair and makeup all before 7.30am. I used to move at such a fast pace. I miss that. Not now. I will do all those things but it will take me 3 or 4 hours.
  10. I get told others should do those tasks for me but it is so important for my well being that I keep as much independence as I possibly can. My husband does all the washing and cooking as that is outside of my capabilities.
  11. I still have goals to get better and resume those activities, even though I know it’s unlikely. There is no cure for my disease, it’s progressive and my prognosis is unknown.
  12. After lunch the fatigue from battling the pain is beyond belief so I need to lie on the bed for at least an hour. I’m not a day time sleeper so I just relax as best I can, reading, watching TV and administrating the online forum I love and manage.
  13. I come back downstairs for dinner and my evening pills and am back in bed by 8pm. My husband joins me upstairs and we watch TV together. We love our evenings.
  14. I rarely leave the house aside from medical appointments but I still have goals to get out a little more.

All of the above is my normal routine unless my stoma becomes over active. I then have to manage changing my stoma appliance, putting all best laid plans out to pasture.

( I have a permanent colostomy due to a severe rectal prolapse. A ‘colostomy’ is a stoma formed by bringing part of your colon (large bowel) out on to the surface of your abdomen).

I do actually love my stoma, which I’ve had for 5 years on the 11th November. The pain and disability from having a severe rectal prolapse was horrific. My stoma restored some quality of life and I’m so grateful for it.

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The Importance of Staying Positive

It can all feel relentless and never ending for anyone in severe pain. I still believe staying as positive as possible is so important to managing it, rather than it completely managing you.

It’s not easy, even for a long time Pollyanna, so don’t be discouraged if there are days when the tears just flow. Tomorrow is a new day. I love that about every morning.

The LORD’S loving kindnesses indeed never cease, For His compassions never fail. They are new every morning; Great is Your faithfulness. The LORD is my portion,” says my soul, “Therefore I have hope in Him.”… Lamentations 3 v 23

Some Simple Coping Tips

My few very simple tips to help cope on some level, with the unrelenting daily grind of disabling pain are:

  1. Set goals that you can achieve. It’s so important. For me it can be as simple as writing a blog article in the day, dusting one room in my home or doing my fortnightly online food shopping. All of these things may sound so mundane and no brainers but for someone dealing with debilitating pain and resulting disability, they are like climbing mountains.
  2. Celebrate the achievement of those goals. That might be making your favourite hot drink, watching a favourite TV show, chatting with a friend if you have the energy. Having a cheeky chocolate. Whatever reward works, take it. A goal achieved feels good!
  3. Ask for help when you really can’t cope. I receive care support for Podiatry, Physiotherapy, Occupational Therapy  and I’m about to get ongoing domestic care. I am comfortable doing that because I really need the help and so does my husband. I am also only asking for help in areas that I simply can’t help myself. I’m  making sure I still keep tasks that I can do. It’s so important for my well being to retain as much independence as possible.
  4. Take time to be quiet, prayerful and listen to music. It feeds my soul and really helps to soothe my pain.

My pain journey is far from over. This broken leg and bone disease is far from ceasing to cause me issues.

Writing gives me an avenue to express my joy and my pain through my health journey. That is healing and comforting for me but I also hope it helps others in pain to know they are not alone.

For those who read this, who don’t suffer excruciating pain, my hope and prayer is that it may help you understand the impact it has on others, who are trying to explain what living with pain is like.

My pain may be my constant companion but I’ll keep on fighting it and hoping that each morning when I open my eyes, it might just be a better day than the day before.

Sam x

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

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

 

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Suddenly So Surreal

~ Sam ~ 18 Comments

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

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

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

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

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

Something that will force you to find another new norm.

Surreal and Scary

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

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

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

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

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

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

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

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

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Big Decisions At Every Turn

Big decisions are confronting me at every turn.

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

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

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

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

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

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

Shake It Off

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

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

So here’s my plan:

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

Feeling A Little Better

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

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

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

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

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

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

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

With that thought, peace and hope returns.

Life will be ok. Different but ok.

I’ll be ok!

Sam xx

Will your anchor hold in the storms of life

Author: Priscilla J. Owens

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

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

 

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

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

I also write @ Blogs by Christian Women

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

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

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Clinging To Hope….Maybe Tomorrow Will Be Better

~ Sam ~ 10 Comments

Every morning I wake up thinking, “Today will be a better day”

Everyday, for more years than I care to count, I finish the day feeling battle weary.

Every night I close my eyes to sleep, clinging to the hope that sleep will be renewing and I will wake up feeling refreshed.

Every night I say to myself, “Maybe tomorrow will be better”.

Every once in a while, not often, I allow myself to fall in a heap and cry and exclaim;

“I can’t do this anymore, I can’t take the pain. I can’t take my body constantly attacking me, beating me, crippling me, attempting to break me”

It’s Just Plain Exhausting

I am so tired. The rollercoaster of surgeries, disease flares, constant fevers and flu like symptoms everyday, broken legs, toxic medication and little evidence of any signs of improvement, or even any hope of improvement, is just plain exhausting.

My situation exhausts my medical team too. They want to fix it. It’s what they do, it’s why they became Doctors. When they come across someone in my situation it breaks them as much as it breaks me.

I think I admire and respect them for that more than anything else they have done for me.

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I often think during my  daily rest periods, “It’s got to get better, hasn’t it?”

I allow myself to look back on my active days. I enjoy recalling those days, although the stark difference to how I am today can sometimes cause the tears to flow.

Hope For The Future

Some days I dare to dream and think about what life would be like with healed legs. I dream of my Bone Disease, Rheumatoid Arthritis, Gastroparesis and all their friends being under control or a distant memory.

I wriggle a little to try and get comfortable and reality hits.

I soon cease dreaming.

My ever present pain causes me to think of what the future holds as my disease and disabilities progress. What further changes might be needed in terms of day to day living. I worry about what will happen to me if anything happens to my husband.

Hope Returns – No Matter What The Future Holds

That thought actually makes me count my blessings. Right here, right now, we have each other. We have high level plans in place to deal with my care should I worsen.

My faith in God assures me that “He will never leave me or forsake me” (Deuteronomy 31:6)

With that thought, I begin to dwell on all the things I can still do, in the here and now, with the wonderful support I have from a caring and loving husband.

Hope returns.

I hear a still small voice saying;

“Maybe tomorrow will be better”

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.

This post was shared at the Salt and Light Linkup Group

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

WEGO Health Award 2018 Nominee

 

A Carousel of Memories and Moments

~ Sam ~ 17 Comments

One of my earliest childhood memories is being on the passenger ship “Aurelia”.

I was 3 years of age and embarking on a journey that would change the entire course of my life. I was migrating from the United Kingdom (London) to Fremantle, Western Australia with my parents and my older brother.

Fuzzy and Special Memories

My memories, of that long 6 week journey at sea, are a little fuzzy given I was so young but some stand out.

I remember the only food available was Italian cuisine. Not something an English 3 year old could adjust easily to, especially when dealing with sea sickness. I was given the only alternative for 6 weeks…canned baby food!

Another clear memory is of our little cabin. It contained 4 bunk beds, a basin and a small porthole. I also remember the intensity of sea sickness as our cabin was below deck and the journey was incredibly rough.

Fresh air on the top deck was a relief and it’s there that my clearest, most special memory lies.

I remember, while seeking comfort and relief from sickness in the fresh air, being on a small carousel or roundabout ride. My Dad was standing at the side. I can see in my mind’s eye his big smile and protective stance. I felt loved, safe and secure in his care. That first clear memory of my Dad epitomizes the wonderful relationship we have shared over the years.

Every time I see a carousel I am transported back to that memory. It’s a positive symbol of love and a happy moment.

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Which Horse Will We Be Riding Today?

I was chatting to my husband today about my health. With tears streaming down my face due to exhaustion from pain, I told him I don’t think I can go on like this. It’s just too hard physically.

Everyday my symptoms are escalating. Everyday another bone breaks or re-breaks. I am literally consumed by pain. Short of filling me with so much medication that I would be in a comatose state or violently ill, there is no solution. No miracle drug, no easy answer.

I feel like my body is trying to kill me without knowing how to do it. It just tortures me.

I found myself trying to explain the unexplainable to my husband but what came out of my mouth stopped me in my tracks;

” I feel my health is like a carousel and each horse represents a different disease. Each day my body selects which horse to ride and takes me on a journey of a selection of symptoms. It’s a perpetual ride that goes around and around. It never stops”

It was the use of the word “carousel” that really hit me.

My beautiful childhood memory had suddenly moved into my adulthood in a way that was no longer sweet and innocent but torturous.

The analogy was so apt though. My husband said he wished he’d recorded what I’d said as he would love to play it to my medical team. Not that they don’t believe me, they do and they care deeply but he felt it described so well the agony of complex and multiple diseases.

He felt every inch of my pain. He cried with me.

Another Special Carousel Moment

In a strange way the carousel from my childhood and the connection with my Dad, now has a deep and tender connection with my husband.

As I used the carousel of symptoms as an analogy to explain my chronic disease ride, he could visualize exactly what I meant. He felt it as much as I did.

Somehow that helped. It didn’t relieve my pain but it relieved the emotional pressure of carrying the effects of my pain. It was shared. Truly shared in an intimate moment of complete understanding.

On this perpetual journey, my husband stands by my side with a tender smile and protective stance and despite my pain, I feel loved, safe and secure in his care…..just like I did with my Dad all those years ago on that carousel ride.

The saying “swings and roundabouts” feels very apt.

I will continue to ride on. I will always ride on but when I have those moments where it all feels too much, I’ll have the carousel memories and moments to muse upon.

Those moments that remind me, not of sea sickness or pain and disease, but of love.

Sam 💞

Love is patient, love is kind…..
It always protects, always trusts, always hopes, always perseveres. 
Love never fails. 
1 Corinthians 13 v 4, 7 & 8 (NIV)

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.

This post was shared at the Salt and Light Linkup Group

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

 

A Paced “Chronic Illness Life”, Sometimes Requires Extra Pacing

~ Sam ~ 7 Comments

I’m a huge fan of pacing. It’s number one on my list of key chronic illness/ pain management strategies.

Pacing doesn’t remove symptoms or take all my pain away. It does help to reduce some discomfort and reduces the risk of me causing an escalation of more crippling issues.

Well, usually it does that!!

My Normal Daily Pacing Routine

Being permanently disabled and medically retired, I have a very set and very strict daily pacing routine. If I try to change it, even slightly, there is always consequences.

So without boring you with every detail the high level overview of my plan looks like this:

  1. Wake up and take pills;
  2. Have breakfast in bed (thanks hubby) and check my forum, emails etc;
  3. Go downstairs and do some chores (eg: light dusting, load dishwasher) 1 hour max;
  4. Make hubby and I morning coffee…..sit and chat for 30 mins;
  5. Clean up coffee cups etc;
  6. Go back upstairs and lie down for an hour;
  7. Get up, make bed and get dressed for the day (this is around 12pm);
  8. Go downstairs and unload dishwasher;
  9. Make cup of tea and sit in my lounge chair;
  10. Hubby makes us lunch and we’ll watch a favourite recorded TV show for an hour;
  11. Clean up after lunch;
  12. Go upstairs to my office and pay bills, check emails and forum etc (30 mins max as the pain is too much in this position);
  13. Go back downstairs for a cuppa with hubby. We’ll often sit in the courtyard;
  14. Go upstairs to lie down for an hour. I use this time to write;
  15. Come downstairs and sit in my armchair while hubby cooks dinner. I continue to write or work on my forum, scheduling segments or chatting with members or my admin team online;
  16. After dinner I shower and am in bed by 8pm. Hubby comes upstairs and we spend the evening watching TV or a DVD, chatting together and I’ve aways got one eye on my forum.
  17. Lights out around 11pm.

It really couldn’t be more paced. I’ve had to completely overhaul my need to achieve a week’s worth of activities in a day. That was my old life. This is my new life.

If I have a medical appointment or we want to attempt a pleasurable outing, I have to rejig the whole day to have any hope of making it happen……that’s a whole other story!

Any Slower I’d Stop Completely

There we have it. Truer words have never been spoken.

There are some days when even my paced approach to living isn’t enough.

There are some days when I simply can’t push through the small active periods of my day.

I have to admit I really do hate those days. It’s like my body digs its heels in and says, ” Where do you think you’re going? I don’t think that’s going to happen today. I hope you have another plan!”

How can I possibly come up with another plan, when I pretty much live at a snail’s pace in four walls in an “upmarket hospital ward”…(aka my home)?

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Pacing The Pacing

There is only one possible plan…pace even more.

Is that possible?

Well, yes apparently it is. I seem to be able to do it when I literally don’t have a choice.

It’s not fun but it’s essential. So, in stark contrast to my normal “active and adventurous” life, ( yes, sorry that was a hint of sarcasm), here is my “pacing the pacing” routine:

  1. Wake up and take pills.
  2. Have breakfast in bed (thanks hubby) and check my forum, emails etc;
  3. Attempt to go downstairs. It’s at this point reality kicks in;
  4. Get downstairs and collapse in my lounge chair;
  5. Try to get up to make morning coffee…fail miserably;
  6. Realise it’s just not going to happen today;
  7. Feel disappointed but very quickly decide it’s a full on writing and resting day. Could be worse;
  8. I’ll throw comfy day clothes on ( throw is obviously a massive exaggeration!);
  9. I’ll rotate between resting downstairs and upstairs but I’ll need to spend most of the day on the bed;
  10. I’ll shower around 4pm, get into bed properly and spend the rest of my day/night there (including all meals).

Take a Sick Day

Despite being a little “tongue in cheek” my important message is that there are days, when living with chronic illness, you have to accept you need a full on “sick day”.

If you were healthy and working you would take the occasional sick leave day. You’d have no choice.

This is no different. There will be days when we can’t function at our “normal” chronic illness pace. Days when we need to take a “sick day” from our chores or other commitments.

I’ve even had days when I’ve had to call in sick to my Doctor. Sounds bizarre doesn’t it but it’s true. That conversation goes something like;

“I’m too sick to see Dr xx today, sorry I’ll have to try another day!!

Don’t feel like a failure if you have to pace your pacing. It’s just a blimp, a glitch. You may get away with only taking one sick day or it might be a case of needing a week of them.

The important point is, the sooner you start “pacing the pacing”, when your body gives you the knowing signal that all is not well, the sooner you will get back to your normal level of paced activities.

I’m trying to convince myself of this, as much as I am anyone else. I know it’s not easy but it’s essential if we want to navigate this chronic illness life in the best state possible.

Take care

Sam xx

Bible Verse

“Come to me, all you who are weary and burdened, and I will give you rest.”

Matthew 11 v 28 (NIV)

 

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

 

 

 

When All Else Fails….Just Cancel The Day

~ Sam ~ 12 Comments

I love life’s little challenges. I love problem solving and turning obstacles into opportunities.

I love putting positive spins on what would otherwise be a very negative situation. I’ve done that all my life, both in my personal life and my working life.

So, chronic disease really wasn’t going to change that about me. It’s just another of life’s challenges. Right?

Well sort of right! It’s probably one of the more difficult challenges that life has thrown at me and it often requires strategies that I wouldn’t normally employ.

One Thing After Another

When I can stick to what I call my Chronic Disease Management Plan, life has a stable flow, despite the unpredictable nature of my disease.

The flow consists of routine daily activities, rest, activities, rest. Pretty simple. It works for me. It’s very limited physically and it’s a home bound routine but as I’ve written about many times, I’m at peace with it and I’ve accepted this new way of life.

Sometimes it doesn’t matter how much we try and pace activity and rest, there will be periods of time when circumstances are outside of our control.

I’ve had a fortnight of one thing after another coming my way. These things weren’t  planned and couldn’t be avoided.

It was like looking at an avalanche moving with full force towards me, knowing I needed to run in the opposite direction but being stuck with legs that wouldn’t move fast enough.

Facing The Avalanche

So when things are really outside of your control you simply have to deal with them as best you can. You have to face it and try to move through it while constantly hoping and praying that a crisis doesn’t eventuate. A crisis that could quite likely land you in hospital.

My avalanche included extra necessary medical appointments which resulted in extra tests and scans over a number of days. All were taxing on me physically and all greatly impacted my “normal” daily schedule that I need to follow to cope with my pain levels and disease symptoms.

The problem with chronic disease is that you can’t just catchup after a glitch in your routine. Believe me I’ve tried. I’ve often thought that one day of complete rest will make all the difference.

One day of rest when chronically ill doesn’t really do much at all.

Drawing A Line In The Sand

At some point, once the avalanche of unplanned and unavoidable activities are over, you have to fully assess the damage.

I’m my own worst enemy when it comes to doing this. I’ve accepted my daily rest periods are now part of my life but I hate having to stop completely.

So my initial plan was to reinstate my “Chronic Disease Management Plan” and return to my normal daily routine.

Ha…well that clearly wasn’t going to work.

So my next step was to try increasing the length of my rest periods for a couple of days.

No, that didn’t work either.

It was time to draw the line in the sand. Time to wave the white flag and retreat…literally!

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I’m Sorry, Today Is Cancelled

I had some other appointments looming as a new week approached and I could feel my avalanche crisis beginning to gain further momentum.

I began juggling my daily schedule to wake up later, go to bed earlier, increase pain medication, put all household tasks on hold.

All were bandaid solutions and not the strategy I needed to employ to rectify my situation and get back to my base disease level of operandi.

Out of the blue I received two phone calls advising that appointments needed to be re-scheduled for various reasons.

What a relief. I’m sure I sounded way too happy on the phone when one caller told me she needed to cancel due to a migraine. I felt so bad about that afterwards. Oops!

As I sat in my armchair, letting the fact that I now had the gift of time waft over me, it became clear what I needed to do.

I needed to cancel the day. Do nothing, plan nothing, just withdraw.

There is always the temptation, when appointments are cancelled, to fill the time with other tasks. I couldn’t afford to do that even though my head was full of  great ideas. My body was screaming at me. I had to listen to it.

Once I committed to cancelling the day and resting, really resting, I realized this was going to be a longer term strategy. I needed more than one day. Two weeks of damage could not be undone in one day.

I had 4 days ahead with no medical appointments. My window of opportunity was there. I could ignore it or be sensible.

I chose to be sensible. Well, I like to think I chose but in actual fact I really had no choice.

Chronic Disease has one non negotiable rule……look after yourself. To do otherwise is pure folly.

So if life has got too crazy, too busy and your disease is flaring out of control, it’s really simple….

When all else fails, cancel the day. Cancel a few days. Take the time you need to recover and get back on track.

Most importantly, please don’t feel guilty about cancelling the day. It’s not your fault. You are absolutely doing the right thing.

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

 

 

 

A Spoonful of Strength

~ Sam ~ 8 Comments

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.

5 Yes, my soul, find rest in God;
    my hope comes from him.
6 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

This post was shared at the Salt and Light Linkup Group

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