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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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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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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Taking A “One Day At A Time” Philosophy With Chronic Illness

“Trigeminal Neuralgia…..what on earth is that?”

That was my reaction when I was hospitalised in May 2014 with the most severe right-sided face pain that I had ever experienced in my life. I had been trying to cope with it for 3 weeks with strong pain killers. I was thinking it was just another idiosyncrasy special to me and would soon pass.

Apparently it was here to stay!

I woke up at 4am on the morning I was taken to hospital by ambulance. The pain had got to such a high level, I was physically sick and running a fever as my body was trying to find a way to cope with it. The rigours had set in and all I could manage to say to my husband was “ambulance, call the ambulance”

I had no idea what was going on but I knew I needed help.

Once in Emergency at my hospital (which I must point out, I am now on first name basis with many of the nurses on the wards due to my frequent flyer status!) the doctor in ER came and listened to my story.

Within minutes he diagnosed Trigeminal Neuralgia, although that diagnosis did need to be confirmed by Specialists.

I was admitted to a ward within the hour.

A long stay lay ahead while my medical team struggled to get this first major Trigeminal Neuralgia attack under control. The first 4 days were pure hell until they found the right medication for my case. Often it’s a medication called Gabapentin that works well for TN. It unfortunately did absolutely nothing for me, despite the dose being constantly increased.

My Clinical Immunologist is the Specialist who looks after the majority of my medication and my Rheumatoid Arthritis. When he visited me on the ward the next day, he was very disappointed I had left the situation so long before coming to the hospital. He’s very hard to read at times but obviously he really does care!

How was I to know?

The Neurologist who saw me once I was admitted, was much more understanding as to why I had deferred seeking treatment. I asked him how on earth can I tell, with this idiopathic complex disease, if a symptom is one that will just go away on its own or one that is more serious?

I don’t want to be running to the Dr every 5 minutes saying that something hurts or doesn’t feel right. It’s one of the hardest parts of having such a difficult disease. He completely understood that I didn’t want to waste anyone’s time but all my Specialists re-iterated that my condition is serious and I am never to hesitate in getting treatment if a new symptom arises.

It’s all a juggling act and one I think I’m getting better at handling…until the next curve ball comes along of course.

So after an MRI, a Lumbar Puncture (which actually wasn’t as bad as I expected it would be) and 10 days in hospital, I was officially diagnosed with Trigeminal Neuralgia.

So, what on earth is that?

Trigeminal Neuralgia is inflammation of the trigeminal nerve, causing intense facial pain. It is also known as tic douloureax because the intense pain can cause you to contort your face and move your head to try to get away from the pain. That type of movement is known as a tic.

The pain of trigeminal neuralgia is intense. There is often no known cause but it can be linked to auto immune diseases, most commonly Lupus and Multiple Sclerosis.

Idiopathic trigeminal neuralgia is a clinical diagnosis and often no testing is required after your Dr has taken a history of the situation. In my case my Specialists wanted to rule out MS so that’s why I needed the MRI and Lumbar Puncture.

My Neurologist however still believed, despite my Lumbar Puncture results being ok, that I do in fact have an inflammatory nerve disease. My MRI was inconclusive for MS but falls into the “probable” category.

We decided to park all thoughts of probable MS as I had more than enough to contend with. In all reality my treatment at this point wouldn’t have changed anyway. The medication I was eventually given to treat the Trigeminal Neuralgia (Lyrica), worked and continues to work really well today.

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My Philosophy of “One Day At A Time”

As I was discharged from hospital in May 2014, with yet another diagnosis to pack in my suitcase, I had no idea what lay ahead.

Just 5 months later the strongest bone in my body (my femur) was about to have a major pathological break and I was to be diagnosed with a rare, debilitating and progressive bone disease.

It’s quite probable that my bone disease is the cause of my Trigeminal Neuralgia. My bones are so dense that they impact all kinds of nerves.

Some days, as I look back on my story, I am just so relieved that I didn’t know what lay ahead. I feel like I have been protected from being completely overwhelmed.

The philosophy of “one day at a time” is a really good one as far as I’m  concerned. I am a strong believer that we are only given in this life what we are able to cope with (even if we feel like it’s a lot to bear). So if that means complex diagnoses and health events will arrive unannounced in their own time, I’m ok with that.

Probably just as well I’m ok with that idea as they do seem to be in the habit of showing up when I least expect them!!

Take care

Sam xx

One day at a time sweet Jesus
That’s all I’m asking from you.
Just give me the strength
To do everyday what I have to do.
Yesterday’s gone sweet Jesus
And tomorrow may never be mine.
Lord help me today, show me the way
One day at a time.

One Day at a Time” is a popular Country and Western style Christian song written by Marijohn Wilkin and Kris Kristofferson

 

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

This post was shared at the Salt and Light Linkup Group

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

I also write @ Blogs by Christian Women

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

Please click here to read our Privacy Policy

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WEGO Health Award 2018 Nominee

 

Living A “Simply Special” Life

Living with chronic and disabling disease requires a complete change of lifestyle, a complete change of thinking.

Gone are the days of waking up in the morning and jumping out of bed to have a quick breakfast, get showered and dressed, head to work or some fun planned day full of anticipated activities.

Losses are real and at times incredibly hard to come to terms with. There is no denying that.

However, chronic illness and disability doesn’t have to be the end of the world.

Those old halcyon days can be replaced with a different kind of lifestyle. A more simpler, easier and less planned approach.

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A New Kind Of Special…Simply Special

A life with severe chronic disease can still be full of happy, special days and activities. They just need to be “Simply Special”

Over the past four years my life, on a physical level, has become more and more disabled. Even so my joy, my purpose and my love of life has actually increased as each year has passed.

A new life has gradually evolved and I honestly am at the point where I can’t imagine living any other way than how I do now.

I value everything. Every moment, every conversation and interaction is special.

Instead of fighting to hold onto my old life, I’m using my limited energy, my talents and anything I can muster, to carve a new manageable lifestyle. It’s unique to my needs but it’s perfectly formed.

My failing body can dictate a lot in terms of limiting physical activities but it doesn’t have to dictate my happiness.

I’m living, I’m alive and I count that as an enormous blessing. It’s a blessing I don’t want to squander in self-pity or in a state of permanent grief or denial.

Looking For The Light At The End Of The Tunnel

Don’t get me wrong…..chronic illness is hard work and it will seek to take as much as it possibly can as it relentlessly attacks. We can easily find ourselves in a black hole that has no light at the end of the tunnel.

There is a light though. As a Christian I have my faith and that helps enormously but it doesn’t exempt me from feeling despair. I have those moments. I’ve lived through horrible mental battles that have made me question how I can possibly face day after day with my disease.

The thought that has always got me through is;

“I’m still alive…there must be a reason for that”.

The day my femur broke I was told it was a miracle that my femoral artery wasn’t severed. Apparently the way it broke it was so close to the artery, I was so close to death. I had no idea….thankgoodness!

I can’t take this life for granted. It’s a gift, even if it is in a crippled state.

A simple life it may be but it’s a “Simply Special” life and I love it.

A Few Of My “Simply Special” Things

I enjoy pottering around my home and cleaning in a super paced way. It takes me all week to get through the weekly tasks but I feel a huge sense of achievement. Yes it hurts but the pain isn’t going to kill me. Not trying to move my crippled body might, so for as long as I possibly can I’m going to keep up my simple pottering.

I enjoy watching TV in an entirely different way. I really listen to the words spoken, I follow the plot and I analyse the script writing and the scenery. I love documentaries about nature. I never used to watch them in my past life. I love travel shows that are not about advertising holidays but about travel through countries with amazing culture and history through the eyes of adventurers. I soak it up.

I’ve always loved learning. Something will spark my attention and I now have time to research topics of interest and really learn about them in depth.

It’s no secret that I love writing. I’ve always written in a journal but now I can indulge in blogging and writing articles whenever I feel inspired. As a result of my blog and online support forum I have connected with people from all around the world.

I enjoy listening to music every day. I can play music while I’m getting dressed and can take as much time as I like (just as well as it’s a slow process). I have learned to savour this time everyday.

These are a few of my favourite things. There are more and they are all “Simply Special”

Where Did That Week Go?

My life is full and my days speed by in a blink of an eye. I’m never bored and mostly I feel like I need an extra day in the week.

So gone are my days of physically running around but those days are well and truly replaced with “Simply Special” things that I can manage lying on my bed or sitting in my lounge room. They can be done at 2pm in the afternoon or 8pm at night. It doesn’t matter. They are not agenda or time driven.

If you have found yourself severely disabled by your chronic illness and are still trying to live a semblance of your “healthy days” life……. STOP!!

Stop what you are doing and think about how you can find joy in “Simply Special” things.

They might be activities that are very different to mine but they will be unique to you. They need to be special to you.

I hope you can find joy and purpose in a “Simply Special” life. It might take time but it can happen despite chronic disease.

Don’t lose hope💗

Take care

Sam xx

“A pretentious, showy life is an empty life; a plain and simple life is a full life.”

Proverbs 13v7 (The MSG)

 

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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WEGO Health Award 2018 Nominee

 

 

A Spoonful of Strength

Sometimes, all I need is a spoonful of strength.

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

Chronic Illness Turbulence

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

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

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

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

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

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

The outlook is…..

More turbulence ahead is imminent!

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

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

(Priscilla J Owens)

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Calming the Storm

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

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

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

My certainties each and every day are:

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

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

A Spoonful of Strength

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

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

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

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

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

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

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

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

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

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

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

Take care

Sam xx

 

This article was first published on Blogs by Christian Women

This post was shared at the Salt and Light Linkup Group

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

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

 

Apparently Life Won’t Stand Still, Even If My Legs Won’t Work!

I recently saw one of my favourite Specialists. I always look forward to seeing this particular Specialist. We have become good friends and enjoy chatting about all things French. She is mad about France as am I. With me being born on Bastille Day and also loving French decor, the food and the language, well it was just inevitable that we quickly clicked after my first appointment 4 years ago.

An Academic Study

The discussion during this last appointment though was a little less frivolous and a lot more serious. We talked through my results and all that has been going on with my Rare Bone Disease.

All is progressing…..unfortunately in the wrong direction. We talked about coming to the point where I am now an academic study for my Specialist team.

They care, don’t get me wrong but I am a genetic anomaly. Rare, special, uncategorised and troublesome in terms of how to treat and manage my bone disease but of great interest to them medically.

My bone disease cannot be treated, it is permanent. My disability is permanent and progressive. This isn’t going away, short of a miracle. I believe in miracles so I am not discounting that possibility but I also have to, no need to, accept that my situation is permanent.

My legs and dead bones will remain dead. We don’t really know what to expect next. I will always walk with aids and require a wheelchair or scooter outside of the home, eventually inside too.

I can walk, aided by crutches, about 200 metres. While I can stand and move like that, I’m going to keep trying, despite the pain. My Medical team agree it’s a good idea.

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This Is Actually Happening to Me!

It was a little disconcerting when my Specialist was relieved that I have permanent residential care approval and the highest home care package approved. It made everything hit home.

This is real. This is happening to me. Not someone I know or care for but it’s me.

I think at that point in our conversation I had one of those out-of-body experiences. It was like I was in the room but not quite connected.

I’ve had many surreal experiences, as I’ve journeyed along this chronic illness path. One of those was when I was first told to prepare myself for needing a stoma. Again it’s not something you just go, “Ok, thanks, that’s great news…sign me up now.”

These things are life changing. They take time to digest and time to adjust to.

Hearing that my treatment is now palliative is very confronting.

It doesn’t mean I’m about to die in the immediate future.  It does though make me feel like I might be on an escalator, moving in that direction a little quicker than the average person.

Life Changing Decisions

More life changing decisions will need to be made over time in relation to my disability and with that thought, I realised that while my disability is permanent, life doesn’t stand still.

My legs might not move but life will soldier on.

The way I respond to the permanency of my disease will change over time. I will find better ways of doing things than the way I do them today.

I will find ways to use my situation to help others more, where I’m able. I will continue to grow with my disease.

I will learn things and experience things in life that I never would have without my disease. I will still set goals that are achievable for me. I will still live a full life in a very different way.

Choosing To Accept Life With My Disability

If I just focus on my disease being a permanent disability then I will struggle to move and live. I have to accept that it is permanent and without cure or treatment, otherwise I’ll be in denial and that won’t end well.

I choose to accept I have a permanent life changing disability and I can still embrace life. Wishing it would go away, wondering why it came in the first place, is a normal response but 4 years into this journey with my dead and dying bones, I am embracing that this is permanent.

It’s not going away but that doesn’t mean my life can’t have value and worth. I might have to dig a little deeper and look a little harder to find ways to enjoy my situation and that will always be a long term project.

What an exciting project though…discovering how to live life anew, embracing every change. Every new challenge presents an opportunity for me to learn and grow.

I need to continually remind myself that life isn’t over. It’s just different.

It’s actually a refreshing prospect! It can be life changing in a positive way.

Take care

Sam xx

You may be interested in another related recent blog post Is Acceptance Just Resignation?

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

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

I also write @ Blogs by Christian Women