Pushing And Pacing With A Progressive Chronic Disease….Courageous Or Stupid?

I have a “Now or Never” philopsophy to life that sometimes gets me into trouble.

Well, let’s face it….always gets me into trouble!

Living with a physical progressive disability involves a lot of pain, lack of mobility and extreme fatigue every day. This kind of disease is constant. It doesn’t ebb and flow with flares. It’s there all the time, slowly worsening.

The sensible approach to this kind of chronic illness life is to pace all activities, listen to your body and lower all expectations.

Generally I do. I advocate pacing, live and breathe it actually. Partly as I don’t have a choice, plus I know it helps enormously with pain management.

The problem is, despite living with a severe disability for 5 years, my mind still seems to disconnect from my body on occasion. I can still visualize myself jumping out of my chair and cleaning up the kitchen, dusting the shutters, wiping down the bathroom tiles, making the bed, getting dressed, doing hair and makeup and looking like “little Miss Perfect” with all the ease of a healthy 18 year old.

Jump Right In – Taking The Stupid Approach

With a galant “It’s Now or Never” approach, I have from time to time, decided I was capable of doing some extra household chores or going out when I really wasn’t up to it.

I have a set pottering routine each day that I follow to keep my body moving and my home clean, but every now and again a “spring cleaning” task taunts me.

Recently it was signs of a little mould on the bathroom tiles. It clearly needed removing in my mind right now!! I managed to ignore it for a few days reminding myself I’m only 9 weeks post spinal surgery. Plus my left foot had been more painful than normal so not a great idea to spend excess time standing on tiles.

Yet the taunting continued. “You can do it. 10 minutes and it will all be done. A simple spray of some mould remover and rinse. You can even spray and leave for 20mins and use that time to lie down and rest”

And so the scene had been set. It all made sense in the moment. I even had rest built into the scheme. I had it all worked out!

Ha….and there the problem was. I had completely deceived myself into believing something impossible was possible. Sometimes in life that’s a great philosophy but not when you are talking about physical tasks on the “possibly not wise to attempt” list.

The result….my pain levels skyrocketed of course. My left foot was already playing up with a known fracture but this galant attempt at being “normal” (with a crutch in hand I might add as I was trying to convince myself I was being good) was the last straw that broke…..well my foot, as opposed to the camels back.

(Note: The foot would have broken further even without this activity as that’s the nature of my disease, but the activity did aggravate the pain.)

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So Why Do We Do These Things?

I ask myself that question at the end of every day. I always review my day when I lie in bed at night and wonder if I could have approached it differently.

Undoubtedly I could always say I’m not able to do anything and throw in the towel. I discussed this with my Client Liaison Manager this week who coordinates my care services.

I told her I wanted to hang on to many of the tasks I do around the home as it gives me a sense of independence. She completely understood and endorsed this approach but she also, very wisely, leaned towards me and said;

It might soon be time to stop doing some things you love doing. You might find you are at the point of pushing through too much”

She’s right. I know she is. I don’t like it. Who would? No one wants to live in a body that progressively loses it’s functionality.

She was very impressed with the ways I found to do certain tasks….a wooden spoon, for example, helps me make the bed. It’s great for tucking sheets into the side of the wooden bed frame. My crutch is a great mop when it’s placed on a wet flannel to clean the bathroom floor.

I have long handled dusters and grabbers placed put in cupboards all throughout my home. Cleaning products in my toilets, bathrooms, kitchen and laundry cupboard so they are all within easy reach.

I know I’ll always push the boundaries. I did when I was healthy so it’s unlikely I’ll stop now. I’m still the same person and it’s those qualities, combining courage and determination, that help me deal with living with my disease.

However, even pushing boundaries can be done in a way conducive to caring for our bodies and respecting our diseases.

Learning to live well with chronic illness is an ongoing education process.

I clearly don’t have all the answers. I trip up all the time.

A Push And Pace Approach

I do know this…..we can’t keep pushing, neither can we give up altogether. I know my medical team endorse my approach of trying things out and listening to my body.

We only get one life and progressive chronic disease will take things from you bit by bit. There will be activities you simply won’t be able to ever do again as symptoms worsen.

When that’s the case it’s really important to push just a little while you can, but ensure you have a number of task free days following. Days when you can completely rest and recuperate. I like to call it a push and pace approach.

So, what’s the morale of the story, for those of us trying to live well with a progressive chronic disability? We don’t have the luxury of waiting for a “non flare” period.

Being chronically courageous under these circumstances is not stupid. It’s a survival technique. A way to feel alive, even for a moment. So long as we are sensible, and by that I mean discuss  with your medical team the type of physical activity you are planning on undertaking, then go for it.

Remember to build in rest time and plenty of pacing days to follow so you can recover.

Oh, and while you’re recovering, feel pleased with your achievements. Enjoy resting knowing there’s still life in this chronically ill body yet!!

I am loving my mould free shower.

Happy pushing and pacing!

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.

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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 those questions I realised the answer to both, 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 now as I was when I was actively employed and 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 delusional 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

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The Spinal Surgery Recovery Road

I’m a week post L4/L5 laminectomy and decompression surgery. I’ve been home from hospital for 5 days and the road to recovery has begun. Well sort of. I really feel like I’m still in survival mode.

My Surgeon tells me we did the right thing proceeding with this surgery. My spinal cord was severely compressed and my legs are already feeling stronger and more stable than they were when standing and walking with aids.

A good early sign. The pain in my lumbar surgical site is quite another story. The pain is excruciating and I’m in for a long 3 months of healing, hopefully with no complications.

It’s still a little too early to say if the surgery has been a complete success. My Surgeon is being cautious and so am I. My body has a habit of behaving badly or surprising us with the most unexpected reactions, so we are right to be cautious.

Recovery Is A Process

One thing I have learned over the years is that recoveries can’t be hurried.  They need to respected. Time needs to be given and all precautions and post surgical instructions must be adhered to.

So from a medical theory perspective, a recovery sounds straight forward and very practical.

There is another side to the medical recovery process. It’s the personal effect major surgery has on your life, especially when you’ve had multiple surgeries over a short space of time.

The fatigue of constant pain from recoveries and often complications, seems never ending. I’m again struggling through the effects of waning General Anaesthetic and strong pain killers. Stomach pain, colostomy complications, lack of sleep plus sitting, standing, walking, bending and daily task restrictions, can really make the recovery process ahead a cumbersome time.

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Reflecting Through Recovery

Surgical recovery restrictions can give us the gift of time. We can choose to be frustrated and bitter about facing yet another recovery period, or we can choose to use the time wisely.

I’m choosing to take time to reflect, in the hope of discovering what my path for the best future possible will look like.

Reflection allows me to grieve the loss of my ability to run, to even walk normally, to shop, to go to church, to participate in life with the energy and passion I have always enjoyed.

I don’t ask why me, I don’t feel sorry for myself.

I’m tired of being in pain but I know I’m not alone in feeling this way. I know others face similar or worse battles. Others journey with me.

Strength In Sharing

The strength of my online support forum members, coming together and openly sharing their stories, clinging to the fact that they are not alone, is heart warming.

I also administer an online forum for parents who have children with Juvenile Idiopathic Arthritis. The courage of these parents struggling with the decision to either medicate their young children with toxic chemotherapy drugs, or take the risk of them having such severe damage to their joints they will be crippled for life, is both inspiring and excruciating to read.

Underlying all the individual stories shared in these forums, is a determination and strength never to give up but to make the most of every day. To accept the pain for what it is while choosing to find joy in the simple things of life. To look at life as a new adventure. To fight for some kind of quality in each day.

All grieving what is lost while also looking forward to finding new ways to live, new activities to enjoy and embracing new friendships formed out of adversity.

The Next Three Months

My recovery road is going to feel long. I’m no doubt going to have moments of wondering was the surgery worth it. I had one of those today and I haven’t even left hospital yet! It’s normal to have those feelings and I know to deny them will hinder my recovery.

With Gods grace, I’m going to ensure I focus on respecting this recovery period so I have the best opportunity of living a full and precious life.

Taking time to reflect is so important and I believe it’s the most important part of the healing process. It renews strength, resolve, courage and new dreams and hopes never thought possible, can be forged.

Who knows what new adventures I may be inspired to pursue on my road to recovery.

Take care

Sam xx

Because of the Lord’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.

Lamentations 3:22-23 (NIV)

 

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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Surgery Can’t Come Soon Enough!

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

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

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

He grimaced and said;

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

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

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

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

Nothing Like Getting Straight To The Point

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

Apparently not!

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

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

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

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

So why are we even contemplating going ahead?

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We Have No Choice

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

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

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

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

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

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

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

Proverbs 3 v 5

Taking The Risk

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

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

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

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

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

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

Accepting The Inevitable

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

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

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

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

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

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

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

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

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

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

Sam xx

I can do all things through him who strengthens me.

Philippians 4 v 13

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

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

I also write @ Blogs by Christian Women

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

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

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From A Spine Tingling Saga To A Cracking Crisis

Sometimes the chronic illness road has twists and turns. Sometimes it has major cracks and potholes.

My latest bone disease adventure has created a new chronic illness road cliché.

I’ve found myself in the midst of what I’m calling,  a “cracking chronic fault line”

Think earthquake and you’ll get the idea.

I recently wrote about my Spine Tingling Saga.

It’s a saga which took a direction I didn’t see coming and my Specialist certainly wasn’t expecting.

Oops…That Can’t Be Good

I woke up Tuesday morning with the same horrific low back pain I’d been dealing with for 5 weeks. It wasn’t improving but I was now under the care of a Spinal Specialist and I felt comfortable with the diagnostic approach he was taking.

The L5 nerve block I had 10 days prior didn’t work. I wasn’t upset, it just meant we knew something else was the instigator of this debilitating pain. In essence this was still progress towards an answer.

By midday each day this new back pain settled enough to help me move a little. I was finding the exhaustion, from pain that was not responding to medication, so overwhelming. I just figured it was par for the course.

I had no idea what was going to happen next.

I had a much needed dentist appointment at 3pm to review my salivary gland blockage. You really can’t have enough issues all at once….don’t you think?

Anyway, I went upstairs to change my stoma bag before going out. I very carefully bent forward to open a cabinet drawer to get out my supplies.

I had only slightly bent forward when I heard and felt an enormous crack across my lower back. I can’t begin to explain the pain but all I could think was;

” Oh No, that can’t be good”

I automatically tried to stand straight, pushing through, what can only be described as a “cracking chronic fault line”

There was no doubt my body was once again having its own shattering earthquake.

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The Ambulance Debate

I called my husband, in what he said was my “Honey, my femur broke voice”.

Whatever that tone is, he knew it and knew I was in trouble.

I couldn’t lift my legs off the ground without wanting to pass out from the pain. In true form my stoma went into overdrive as it does if a major bone disease incident occurs.

I needed to change my stoma bag desperately but we also knew we needed an ambulance.

I didn’t want to call one as I inevitably knew I’d be admitted. I do love my hospital but I love my home more.

So we had a short debate of “should we, shouldn’t we” and after 10 mins of no improvement we made the 000 call.

We somehow even managed to remember to call the dentist to cancel my appointment. They were obviously very understanding under the circumstances.

You’ve Made The Right Decision

The paramedics were there within 5 minutes. I couldn’t sit at all. I was standing on very sore broken femurs, leaning on two crutches.

I’ve never had a canulla inserted before while standing but I did on this day.

They quickly heard my story of my rare bone disease and what they said in response was so beautiful;

“We do this job to help people like you, who have serious conditions. Never hesitate to call us, even if you just need us to give you extra pain meds”.

I knew we’d done the right thing to call and that I was in good hands. Their genuine care and concern caused me to cry with tears of gratitude and relief.

The reality of “here we go again” was hitting home.

A Special Reunion

I was only in ER for 30 mins when I was told I was being admitted.

As I was being transported to my hospital room, I realised this was the ward I was in when my femur broke.

The nurse entered my room to “check me in” but this wasn’t just any nurse. This was the nurse who cared for me so beautifully 4 years ago when I was brought in with a major pathological femur break. This was the nurse who put my leg in traction that day and then ran to get me the best cup of tea ever.

As she walked into my room our eyes locked and we both exclaimed;

“Oh my goodness it’s you!!”

We couldn’t believe it. We also couldn’t believe that it was 4 years ago, this very week, we were going through the broken femur saga.

Here we were again….4 years later!

I knew whatever was happening to me now, I was again in good hands. More and more staff came into the room who remembered my story and were full of care and concern for this next episode.

It was such a special reunion in the midst of yet another bone disease crisis.

So What’s Going On This Time?

Oh that we knew the answer to that!!

The jury is out. The pending verdict includes;

1. Avascular Necrosis of the right hip causing instability and impacting my lumbar spinal stenosis further.

2. A stress fracture (not yet showing on current scans)

3. The Lumbar lateral recess and central stenosis at L4/L5 , which is compressing the spinal cord, may be causing all the issues. This is the most likely scenario.

Next Steps

We do have a plan courtesy of bouncing ideas around with my Spinal Specialist.

1. A series of facet joint injections to try to settle the spinal cord compression.

2. If I get even a minor decrease in pain with the facet joints injected, my Surgeon wants me to undergo radiofrequency neurotomy from L4 to S1.

3. If all else fails, unfortunately we can’t avoid L4/L5 decompression surgery.

So at least we have a plan and you all know I absolutely love a plan.

Jeremiah 29 v 11

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Staying Stress Free

It’s a known fact chronic illness is stressful. Even the most upbeat, positive person still has moments of worry and concern.

We don’t know if this latest issue can be fixed or if I am facing this intense crippling pain for the rest of my life.

What I do know is I need to be doing all I can to work out what we’re dealing with. Definitely ticking that box.

I also need to know that my husband and I are thinking about what further life changes are required if this new pain and disability is permanent. We are working on this.

Focusing on both current and future needs, while confronting, is important to staying as stress free as possible.

Hmmm….maybe the boy scouts really did have something with their motto of “Be Prepared”.

I can’t stop a “cracking chronic fault line” in my chronic illness journey, but I can work on being as prepared as possible for them.

This spine saga is far from over so stay tuned for more in my, “Chronicles of a Spine Tingling Saga” series.

There is sure to be a few chapters ahead full of twists and turns. I’m just hoping to avoid any cracks!!

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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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