Shining a Light on Living with Chronic Pain

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

 

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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

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Finding Your Way Through A Chronic Illness Conundrum

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

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

Trying To Fit The Pieces Of The Puzzle Together

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

Good progress is made. The puzzle pieces start to fit together. Treatment plans are made. Great anticipation builds in the hope that symptoms may reduce, even if a cure is out of reach.

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

Nothing except a missing piece of the puzzle.

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A chronic illness conundrum.

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

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

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

The Gift That Keeps On Giving

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

I recently had a worsening of symptoms and new symptoms. My conundrum was, do I “watch and wait”? Do I make an appointment to see my GP or one of my Specialists? Do I go to the ER?

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

We don’t want to face conundrums, neither do we want to be a conundrum to our Dr or our family and friends.

We would love to focus on something other than our chronic health but when it’s all encompassing and ever giving, we can’t escape.

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

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

Finding A Way Out Of The Conundrum

Finding a way through my new chronic conundrum will restore peace and instil a sense of hope. That’s my goal. Staying peaceful and organised is one of my major pain management tools. It’s critically important!

So, as I do, I made a plan and took action to deal with the latest puzzle my body threw at me. With my recent conundrum, I assessed that going to ER would be too much of an ordeal, I determined to let my Specialist team decide what’s best.

Here’s what my very simple but effective plan looked like:

  1. Stay calm – I did this by writing and planning. Works for me! (Find what works for you. You can’t plan effectively without calming yourself a little first.)
  2. Make an appointment with my GP to deal with some minor general health symptoms;
  3. Email my Orthopaedic Surgeon explaining my new worrying bone disease symptoms and worsening existing symptoms;
  4. Send a copy of the email to my Endocrinologist;
  5. Don’t change anything to my current treatment plan until I’ve spoken to my medical team;
  6. Prioritise all necessary tasks, cancel all unnecessary tasks, appointments etc;
  7. Rest….Do something relaxing, knowing that while I haven’t solved the conundrum, I’m back on track and heading in the right direction.

Within a day my plan began to produce a positive outcome. An urgent MRI was ordered. It was assessed quickly and I was advised I do indeed have a worsening of my bone disease. My spine issues required a Spinal Surgeon/Specialist to be added to my medical team. A referral and appointment time were quickly arranged.

A Light At The End Of The Tunnel

While my planning didn’t provide an immediate solution to my new conundrum, it produced an outcome and a new action plan evolved.

There was progress and that felt so good.

Having an effective plan doesn’t mean the outcome will be good news, but it does mean I’m going to find out what’s going on with my crazy body.

It does mean I feel less alone in battling through a whole new level of excruciating pain. I have new people, the right people, on my team now working with me to find that elusive piece of my current puzzle.

I can see a little light at the end of the tunnel.

Maybe, just maybe, the missing piece of this jigsaw will be found.

Until the next chronic illness conundrum, when I will start this process all over again.

Take care

Sam xx

“But as for you, be strong and do not give up, for your work will be rewarded.” 2 Chronicles 15 v 7 (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 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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“Where There’s A Will There’s A Way”….Is It Really That Easy?

I was loading my dishwasher this morning and fighting with a plate that refused to fit in.

It wasn’t really the plates fault. I was in severe pain and trying to get the task over as quickly as possible. I was also trying to fit way too much into this particular load…..as you do!!

So as I continued to engage in one to one combat with my dishwasher, I loudly exclaimed, “Come on, where there’s a will there’s a way”.

My renewed determination actually worked and with a quick reshuffle of a few bowls, my plate finally found its resting place. Phew! Door closed, button pushed, all done.

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Is It Really That Easy?

As I returned to my armchair to rest and recover from my efforts, I began thinking about the old English proverb I’d just used to spur myself on to success.

“Where There’s A Will There’s A Way”

It just rolls off the tongue so easily doesn’t it. I have always lived my life with a “mind over matter” type approach. I’ve always believed that if I was determined to achieve a particular goal, I could find a way to do it.

Generally I could. Not anymore. Not like I used to. Life isn’t as easy now.

Chronic Illness changes everything. No amount of mind over matter or old English Proverbs, cheering me on to achieve absolutely anything, is going to cut it.

Does That Mean I Should Give Up Trying?

Chronic Illness does significantly impact most areas of our lives, there is no denying that.

So should we just give up trying to set goals? Should we put up an “out-of-order” sign and let life pass us by?

No, I don’t think we should. I do think we need to be realistic though about our new capabilities.

I could set a goal of running up a mountain but that would be ridiculous. I’d be setting myself up for failure. My non-union broken femurs are obstacles to that goal that won’t be removed by simply spouting, “where there’s a will there’s a way”.

Even if I searched for a way by perhaps being pushed up the hill in a wheelchair, I would still be setting myself up for failure. I can barely sit in a motorised wheelchair for more than 10 mins on a smooth surface.

Inflammation quickly builds around my broken bones and pain sears as bone on bone begins to rub. My feet fracture just looking at them and I’m not exaggerating.

No, that is not a goal I can achieve no matter how many times I stoically shout “where there’s a will there’s a way”!

So What Is Achievable?

Realistic goals are achievable. There may even be goals that require us to stretch our limits a little and that’s ok.

Let me give you an example. I had a goal today to write a blog post. I am absolutely exhausted, pain is soaring (the dishwasher incident didn’t help) and I have a new foot fracture. I’ve just been diagnosed with a compressed spinal cord at L4 as a result of my rare bone disease progressing.

The compression is on the right side and is a result of a central canal stenosis and a lesion on the right side facet joint. The pain is excruciating and I have a whole new journey to travel in relation to this diagnosis.

So, you get the picture. It’s a tough day. No one is going to care if I don’t write my blog post. I could leave it until next week. It doesn’t really matter.

It does matter though. It matters to me and that’s the key.

When we set goals they need to be achievable but they also need to be something we are passionate about. Something that drives us to want to achieve them.

Those who know me well and follow my blog, know I’m passionate about writing. It’s what I do now. It’s how I connect with others. It’s one of the major activities I use to keep the one part of me that still works active…my brain.

Finding A Way

To achieve my goal of writing this blog, I had to find a way.

Firstly, I had to mentally commit. To do that required me to push aside my first thoughts that crowded my mind. Those were the thoughts that were telling me to just leave it until next week.

I did consider that option. It was a valid option but as I thought about next week, I knew I had other goals I needed to achieve, so it soon became a non-option. That was a positive thought process as it forced me to think about strategies to achieve my goal today.

I determined I did need to find a way to achieve this goal as I knew, aside from any other reasons, it would be a great distraction from my pain.

So I made a 4 step plan:

  1. Take my afternoon pain meds;
  2. Wait for an hour so they kick in;
  3. Write while lying down on my bed, using my phone. (I’ve taught myself to blog on my phone rather than using my tablet or PC. It has removed so many of my writing obstacles).
  4. Take my time and enjoy the process.

Maybe Where There’s A Will, There Is A Way Afterall

If you’re reading this you’ll know I did it! I achieved my goal. My determination, commitment and planning, was rewarded as I persevered and was able to hit the publish button.

So maybe the old English proverb does have some truth to it.

When it comes to chronic illness we definitely need to ensure we are not setting ourselves up for disappointment. Our diseases cause us enough stress and sorrow without us deliberately adding to it by trying to achieve things which are definitely out of our reach.

Don’t let that put you off setting goals though. It’s so important that we feel that sense of achievement. We might be chronically ill but life needn’t completely pass us by.

Find something you are passionate about and set a realistic goal. Or maybe it’s something that needs doing, you have the ability to do, but you’re  dreading it. The same principles apply.

Using the word “Simple”, I’ve created an easy to remember planning outline. I hope it will help you achieve goals that might seem out of reach right now.

S.I.M.P.L.E

S – Set a timeframe

I – Improvise where necessary

M- Modify your plan if you meet a roadblock 

P – Picture the final outcome as you work

L – Listen to your body if you need a rest

E – Enjoy the process.

Keep your goal simple, keep it relevant to your abilities. Before long you could be discovering, despite chronic illness, where there’s a will, there might be a way.

Take care

Sam xx

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

I’m a regular 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

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A Cheerful Approach To A Chronic Situation

 

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

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

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

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

Sometimes You Just Have To Laugh

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

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

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

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

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

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

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

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Letting A Cheerful Heart Emerge

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

It’s not easy.

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

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

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

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

A Chronic Situation

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

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

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

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

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

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

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

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

The Best Medicine

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Take care

Sam x

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

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

I also write @ Blogs by Christian Women

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

Please click here to read our Privacy Policy

This post was shared at the Salt and Light Linkup Group

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

How often do you tell yourself ” I should be doing such and such” or ” I’d better do this or that” ?

We all do it. It’s like we are programmed from birth to constantly have a catalogue of “should do, must do, better do”, all filed in the front of our minds for easy reach.

I’m as guilty as the next person. Even though my body can hardly do anything, I still give myself those messages. It’s ludicrous!!

Chronic Illness Comes With Chronic Restrictions

If diagnosed with a “Chronic illness” it means you have something that is ongoing. It’s life changing. It may be life changing to varying degrees for each of us but you can guarantee, in the majority of cases, how you used to live is no longer going to be possible.

Yet, despite this knowledge, we still allow ourselves to be drawn into a conversation with our healthy alter ego that goes something like this;

I’ll just do that extra load of washing today, come on, just push through”.

Oh I can easily have my friends visit for morning tea and squeeze in my blood tests in the afternoon. No worries at all”

When we were able-bodied and healthy, tiredness was probably the worst we had to contend with. That’s not the case anymore.

Chronic Illness comes with chronic restrictions. It’s as simple as that.

In the written form, that sentence sounds so logical and simple, but to change a life long behaviour of pushing through is incredibly difficult.

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Why Don’t We Just Listen To Our Bodies?

Listening to our bodies when chronically ill, means we need to accept we are not capable of doing what we used to do. No one wants to admit defeat. We all want to feel empowered, successful and free.

Ironically if we do accept our disease and the restraints it places on us, we will eventually feel that sense of control we are seeking.

While we continually give ourselves denial messages of ” just push through, I’ll be fine”, we are increasing the restraints our disease is trying to inflict. We are crippling our bodies more than necessary. Now that really doesn’t make much sense if you stop and think about it.

We end up in a vicious cycle of more pain, tiredness and other worsening symptoms. All of which remove more and more control over our daily lives.

So how can we help ourselves?

Our Bodies Key Messages

Our bodies give us key messages every day. Pain and fatigue are the two key indicators, in my opinion, we need to watch out for. When they present and begin to increase, it’s time to listen, stop, review and adjust.

Let’s look at each of those categories a little closer.

Listen

My pain is constant but it does have varying levels. I have base pain, intermediate pain and severe pain.

At my base level, I can function around the home doing a little cleaning, making cups of tea, doing admin work, writing and managing my forum. I can also go out for an hour for a coffee with my husband once during the week and I can more easily get to medical appointments etc. At this level I must have morning and afternoon lying flat on the bed sessions and I can’t be on my legs for longer than 30 mins at a time.

At my intermediate level, I need to reduce my cleaning tasks, avoid sitting at my computer to do admin tasks and increase my laying down sessions from 30 mins to 60 mins. I can still manage my forum and write while resting. I can only be on my legs for 10 mins at a time

At my severe pain level, I need to rest for the majority of the day. I can look after my basic hygiene, I might be able to write a little while resting but interacting and managing my forum is more difficult.

I have learned (the hard way) to listen to my body when it gives me the warning signs I’ve moved from basic, to intermediate, to my severe pain/disease activity level.

Stop

I’m sure most of us with Chronic Illness do listen to our bodies, but listening without taking some kind of action isn’t going to help us take control.

Stopping is the first action required. What I mean by stopping is just taking a little time to sit, so you can work out what’s going on and what you need to do about it.

A good stopping action is to put the kettle on and make a cup of tea or coffee.  Take a much needed breather.

Review

Once you’ve stopped for a moment and are sitting down sipping that relaxing cuppa, it’s time to review.

Ask yourself some key questions at this point.

  1. What just happened to make you stop?
  2. How did/do you feel?
  3. Are you overdoing it?
  4. Can you re-schedule your day?
  5. Is what you were doing really necessary? (Be very honest here)
  6. If you take a longer rest period will that help you recover quicker?
  7. Are your increase in symptoms due to overdoing it or do you need to seek medical advice?
  8. Are you telling yourself “I should be doing….”?
  9. Can you tell yourself “No, I shouldn’t” ?
  10. Do you want to feel more in control of your disease?

Adjust

We can listen, stop and review as much as we like but unless we adjust our activities nothing will change.

Once you’ve gone through the review process take action straight away based on your answers to the key questions.

I can almost guarantee, if you do you will feel immediate relief in terms of well-being. You will feel like you are back in the driver’s seat. Yes your disease has placed restrictions on you. Yes you are in pain or dealing with other kinds of symptoms but you have taken control.

By listening, stopping, reviewing and adjusting, you have improved your situation. In fact you have probably ensured that activities you want or need to do, later in the week, will actually have a good chance of happening.

Should You?…No, You Shouldn’t!

So next time you find yourself talking to your healthy alter ego and you hear the words, ” I Should, I Better, I Have to do it”, remember there is only one response.

It’s the response that puts you back in control. The response that is full of wisdom and will empower you. It’s the response that will ensure you will be successful in living well with your chronic illness.

The response to “I Have To Do…..” is simply, “No I Really Don’t”

Take care

Sam 💞

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 regular 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

 

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

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