Now or Never Philosophy

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

Living with a physical disability involves a lot of pain, lack of mobility & extreme fatigue a lot of the time. With that in mind the sensible approach to life would be to pace all activities, listen to your body and lower all expectations.

Generally I’m ok with that. The problem is that my mind seems to disconnect from my body. In my mind I can just hop out of the chair & clean up the kitchen, dust the shutters, wipe down the bathroom tiles, make the bed, get dressed, do hair & makeup and look like “little Miss Perfect”

So, that’s what I attempted with a galant “It’s Now or Never” approach to living “stupidly” with a disability.

The result….my left foot has a fracture. It was the last little stretch onto my toes to reach something (with a crutch in hand I might add as I was trying to convince myself I was being good) that was the last straw that  broke…..well my foot, as opposed to the camels back.

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So, the morale of the story for those of us trying to live well with a chronic disability is that “Now or Never” usually ends up in “Never Again”. 😊

 

Life is Full of Surprises!

Surprise

 

It’s a cliché! Life is full of surprises. We all know that and we probably all like to think we are prepared for them. Sometimes though they come when we least expect it and they are not always good.

This week has been a really tough week. I was happily thinking I had 3 weeks up my sleeves before my major surgery on the 23rd Feb. Time to rest and get as much strength as possible. Time to clean ( I always go through a crazy nesting type process every time I have surgery coming up. It’s as if I will never be able to clean again and everything must be perfect and in order.) Anyway, I digress…so I was looking forward to the next 3 weeks and it was all nicely laid out.

Hmmm…. always expect the unexpected really has been my life motto, especially since my body started failing me. That motto should have been front and centre in my mind as I woke up on Monday morning unable to weight bear at all on my good leg. That leg has been my friend over the past 15 months. I’ve been counting on it to behave so you can imagine how unnerving it was when I had severe pain in the mid shaft femur in my good leg, very similar to how my bad leg behaved before it snapped in two.

I began the reasoning process. “May be the leg was just tired. Maybe I had done something I shouldn’t. I’m sure with some pain killers it will be better tomorrow!’

I woke up Tuesday morning to more pain in that leg and couldn’t get down the stairs without it feeling like a knife was slicing it in two. So began a week of surprises 😦

Peter and I sat in the lounge room having a cuppa contemplating what should we do. We decided to put a call into my Surgeon and let him make the decision. He wouldn’t be happy with me if I didn’t tell him before my upcoming surgery if I was having a change of symptoms as he has been worried about what my bone disease was doing. So I made the call and his secretary ( who is lovely I might add and also his wife) assured me that I had done the right thing to call and she would talk to my Surgeon as soon as he finished with his patient.

We were relieved. We just had to wait for that call back. That came so quickly and so did our first surprise. My Surgeon didn’t want to take any chances, he was admitting me to hospital that afternoon for review. Wasn’t expecting that! Was expecting to be sent for an xray or a bone scan at the most.

Once in the hospital I found out my Endocrinologist had been conferenced in and her team were there to greet me once I was on the ward. The concern was that I had a stress fracture in my good leg ( or it was a good leg). My blood pressure was through the roof because of my pain levels so first priority was getting the right pain relief. The next morning I spent 3 hours in the xray department having an MRI and numerous xrays. I was also being prepped for surgery as my Surgeon was convinced I had a stress fracture and he was going to put a pole in the good leg. Aaagh… next surprise.

Just before lunch my Surgeons Registrar came up to see me to say that the MRI was all clear. They couldn’t find a stress fracture, no surgery required just pain management. I was going to be kept in a little longer to get the pain under control. They thought it was probably neural compression from the demands being placed on my lower back etc due to the left broken femur. That made sense, I was relieved and happy to accept that diagnosis.

During that night, I tossed and turned in the uncomfortable hospital bed, as you do, waiting for the next nurse to come in and take my blood pressure. As I lay awake I was thinking through the events of the past 2 days and my pain levels and how they compared to the pain in my broken leg and I had an overwhelming sense that something wasn’t right. They had missed something. I know my Surgeon is thorough and I knew if there was something they had missed he would march into my room the next morning and tell me.

Next surprise!! My Surgeon did march into my room the next morning with a very sombre look on his face. The poor guy had been in theatre until late the night before so I knew that had something to do with his demeanour but he is not a man to mess around. Straight to the point he says ” No fracture but the MRI is not clear as we first thought. It actually shows that you have bone marrow inflammation in the good leg. You are in danger of it fracturing.” My heart sank but I also felt relieved to know that my concerns were validated and my medical team were on the ball and we now knew what we were dealing with. My bone disease is active, possibly rampant.

I was allowed home with strict instructions to remain “wrapped in cotton wool”. No slipping, tripping etc. My bones are too vulnerable. I don’t often cry, I’m fairly resolved that my life is going to be one of surprises and challenges but it is a horrible feeling to think that your bones are so diseased, nothing can be done except surgery when things break, surprises will always be imminent. We still don’t even have a name for this bone disease. Still the closest they can come to is a rare bone disease called Osteopetrosis (opposite to Osteoporosis) but it seems my version is even rarer than that.

I sat on the hospital bed and a lovely nurse came in. We looked at each other and smiled. She said, “You’re not ok are you?”  I really couldn’t answer her, the tears had begun to flow and we just sat there in silence. She understood.

I’m home now, waiting for my major surgery in 2 weeks time. Hoping not to have any surprises before then! I’m wrapped in cotton wool and being really good. I really don’t have a choice and I am scared that I’ll end up with 2 broken legs that won’t heal. Fear though is crippling and I don’t need to be afraid. I might be crippled physically but spiritually and mentally I have a choice to not let fear rule me but to replace it with trust and love. I trust that Gods hand is on my life, leading me and protecting me and there are so many moments over the past few days when I know that is so true and I am being well looked after. I trust my medical team. They care more for me than I could ever have expected. My Surgeon has even given me his private number to call next week if I need him as he will be on holidays.

Love, well that surrounds me. My husbands love and care and support lift me up and provide me with the comfort and security I so need. Friends and family are encouraging but mostly I love life! That is why I get up every morning and despite the obstacles find something within the day to enjoy. Something to laugh at, something even to cry about. Just to feel, just to breathe is such a gift and it is all of these things combined that make me feel that I can cope with what lies ahead and be at peace with the fact that “Life is full of surprises”

 

 

The day my femur broke!

My left femur broke spontaneously on October 6th 2014. It just snapped in two, no warning, apart from pain at the site for a few weeks, it just happened!!

From a medical perspective it is a pathological break and we now know I have a rare genetic bone disease.

It’s The Strongest Bone In Your Body….It Can’t Just Break

The break of the strongest bone in your body though, is much more than a medical episode…it is life changing. It is forever etched in your memory and for me it is still an ongoing nightmare as it remains broken over 4 years later.

The medical term is non-union. The personal story is one of ongoing pain and disability. The bone disease is spreading and I now have a stress fracture in my right femur which has needed a rod placed in it as a preventative measure. It too was about to snap and neither me nor my Orthopaedic Surgeon wanted to relive that particular nightmare. I also have constant foot fractures and other bones throughout my body are showing signs of disease.

Every now and again I allow my mind to return to that day. To remember, to ponder about the circumstances surrounding that moment. It has its own story and it’s about time I wrote it!

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It Was Anything But An Ordinary Day

A story like this should start something like…

It was an ordinary day…..

The day my femur broke was anything but ordinary. It was supposed to be a day of celebration and excitement and it certainly was heading in the right direction.

My Aunty and Cousin had been planning a trip to Australia from the UK for over 2 years. We had emailed so many times discussing the details, getting excited about being re-united after 30 years and it was going to be the trip of a lifetime.

My cousin was only a new-born when I had first met him on a trip to the UK when I was 18. My Aunty and I had been enjoying getting to know each other online and were so excited about actually spending time together.

Anticipation was high. Their arrival date was all booked, October 6th 2014.

We were to pick them up from the airport at 1.30am. It was going to be a struggle for me at that time of the day with my stoma and Rheumatoid Arthritis. I also had a very sore leg which had just been diagnosed as muscular pain, as an xray taken the week before was supposedly clear.

I was determined to get there to greet them. I was using a walking stick as I had, a few weeks prior, been diagnosed with a stress fracture in my left foot but I had no idea what was to eventuate in the coming hours.

We made it to the airport and the reunion was wonderful as we greeted each other in the arrival lounge of the Brisbane International terminal. We’d had the perfect trip in at that time of the night so we were able to quickly return home as well.

I had prepared a light supper so we sat around the table eating and talking. So much to talk about, so much to share. Conversation flowed easily.  They were family and both my husband and I felt like we had always known them and always been a part of their lives.

Before we knew it the clock chimed 4am and we decided it was probably best if we all tried to get a few hours sleep.

It Was As If The Birds Could Sense Something Wasn’t Right

Oh, how nice to climb into bed. My leg was really hurting even as I lay there but it was muscular pain, so I was told, so I just hoped the pain killers would kick in and some sleep would help restore some energy.

We had been up for 20 hours! Way too long for someone with a chronic disease. I was so proud of myself for managing to hold it all together and for meeting them at the airport.

I closed my eyes to see if sleep would come but the birds outside were so loud. I can still hear them now as I think back. It was quite an unnerving sound and I couldn’t put my finger on why that would be. I hear them every morning and their song is usually beautiful. It was almost as if they could sense something wasn’t quite right.

9am…..I could hear some rustling downstairs and thought it might be my Aunty.  We all expected my Cousin to sleep late! My husband and I went downstairs and joined my Aunty for breakfast on the back deck.

It was a beautiful morning and we chatted away about the week ahead and what they might like to do. The excitement continued to build, despite our tiredness.

About 10am my Cousin joined us much to our surprise. Poor guy looked so jet lagged!! Coffee needed, lots of it!

The Longest Monday Ever

My Aunty and I decided that we should get out of our PJ’s and get dressed for the day. No point trying to get anymore sleep at this stage. I remember my Aunty saying;

” This is going to be the longest Monday ever”.

If only we had known how true those words were going to be.

I walked upstairs and was just about to open my bedroom door when I felt a snap! My leg was like jelly and I don’t know how I knew but I knew my leg had broken. I can’t recall pain at that point. I remained standing on my right leg with my left leg off the floor. I called out, rather loudly and definitely, for my husband. My specific words were;

” My leg has broken”

My husband came running up the stairs in a flash. My Aunty shot out of her bedroom and was right behind him. He said later he knew by the tone of my voice that I was definitely in trouble.

Would you believe my Aunty was a registered nurse in the UK and had just retired. What a blessing to have her there, just at that moment, for such a time as this! She talked my husband through what to do. They somehow managed to lay me on my side on the bedroom floor, placed a pillow between my legs and under my head.

You know I can’t remember feeling any pain at that point. The shock must have just taken over. I didn’t feel sick, I didn’t faint…I just organised!! That is so me.

I was crying but not for me, I was crying because I felt like I was ruining my Aunty and Cousins holiday. I just kept saying;

“I am so sorry, I am so sorry!”

Everyone was telling me, it’s alright, it’s not your fault but I felt so bad for them.

I could hear my husband downstairs arguing with the ambulance 000 operator. He was trying to get them to understand I had actually broken my leg and no there hadn’t been a trauma to cause it, it had just happened.

We now know it is such a rare occurrence, the operator hadn’t heard of it happening. Even the first set of  paramedics who attended me couldn’t believe it was possible. They thought it might be a ruptured tendon. I was seriously hoping it was only a ruptured tendon at that stage!!

I remember the paramedics trying to work out how to get me past a piece of furniture on our landing. They were discussing dragging me past it. Aargh. I quickly yelled out to my husband and cousin, to please move the cabinet!  There was no way anyone was going to try to drag me passed anything with a broken leg.

I can’t believe I was still able to organise… up until that point anyway. Soon after the pain killers started knocking me out.

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The Femur Break – Snapped in Two!

A Blood Curdling Scream

They eventually got me downstairs and outside using a chair stretcher ( I can’t remember that bit). As they tried to move me, onto the ambulance stretcher, they saw the bone slide outwards….there was no doubt my femur had snapped in two.

I let out a blood curdling scream…this was pain and I remember it like it was yesterday! The first set of paramedics panicked and called a trauma ambulance. We had 2 ambulances in our driveway at this stage, all providing a wonderful show for our neighbours, now lining the street wondering who had been murdered!!

My Stoma Eruption

I must just fill in one part of the story. While my husband was sorting out getting an ambulance, my stoma decided to erupt. Probably the shock setting in but all I could think of was I needed to have a clean stoma bag before the ambulance arrived.

Here’s where my beautiful Aunty stepped in with her nursing hat on and she jumped into action. I was able to tell her where all my supplies were and she gathered everything we needed. Together, with me lying on the bedroom floor, we changed my stoma appliance.

What an amazing Aunty! What a bond we had made. A bond so special, it would become even stronger over the years to come, because of this extraordinary day.

How thankful and sure I was God had provided for me, in this extreme time of need, with someone by my side who knew exactly what to do!

Back To The Main Event

So, once the paramedics decided that I could be stabilised, with my legs bound together, we finally set off for hospital in the ambulance. My Aunty got to ride in the front seat and the ambulance driver gave her a sight-seeing tour along the way. Not quite what we had planned but it was certainly an adventure which she shared with family and friends in postcards over the coming days.

The rest of the day was spent in ER and the x-ray department. I remember being in a world of pain as I was moved in directions that my leg just couldn’t cope with to get the right x-ray image.

The young radiologist couldn’t find anything to begin with. She was so lovely and being so careful with my leg. She was focusing the images on the femoral neck as this was the usual place for a non trauma femur fracture.

I could tell she was getting concerned as xray after xray wasn’t showing anything. She eventually asked me where the pain was most intense. With so many pain killers on board my memory of the intense pain was waning already. I remember explaining it was the middle of my thigh and my knee was hurting.

That was the key!

She positioned me for the next x-ray image and ran to take the shot.

Within seconds she returned to my bedside and I’ll always remember her words;

You are definitely in the right place. We will look after you. I’m so glad you told me about the knee pain”

I was so relieved. I quickly asked had she found the break? She replied with a mixed look of relief, horror and sadness, she had indeed found it.

Finally I got to my ward room at 7.30pm.

The worst was yet to come!

Five nurses were organised to move me from the ER bed to my room bed. Oh the pain! They shut the door of my room and gave me a pillow to put over my face to try to dull down the sound of my scream. It was not a scream you could control. It was so awful.

They finally managed to get my leg in traction, where I stayed for 24 hours before surgery the following evening. While it was horrific getting it into traction, the relief was fantastic once my leg was in it.

The nurses felt so sick. They had seen the bone move sideways and push against my skin as they were moving me. They were so lovely, so concerned.

The first thing I asked for was a cup of tea…….what else!! I’m an Aussie but I was born in the UK and we all know tea fixes everything!

Tea Makes Everything Better

It was the best cuppa ever. I was finally alone in my room. I had time to reflect. What a day. So many disappointments but so many blessings.

We don’t know how we would have coped that day had my Aunty not been with us. Such a long way to come to be there to help her niece in her hour of need, but we all felt that sense of us  being in the right place at the right time.

I was so grateful my leg broke at home and not at the airport. So grateful for my loving husband. So grateful for the hospital staff, who knew me well from previous stays and made me feel like I was in good hands.

I didn’t know what the future would hold but I felt a sense of peace that God had looked after me that day and He would take care of me in the coming days, weeks, months, years as well.

I was so aware my life was changing. So aware I had an unknown journey ahead of me but at that moment, alone in my room, I closed my eyes.

I was so relieved the 6th October 2014, the day my femur broke, was about to end.

 

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

This post was shared at the Salt and Light Linkup Group

It’s A Rare Genetic Bone Disease

It’s 11 weeks post my left femur break and surgery to insert a titanium rod from my hip to my knee.

I am still on 2 crutches and will be for another 3 months, at least. My Surgeon is pleased with my progress but keeps warning me this is a long slow process with healing expected to take 18 months.

The Break x-ray (Ouch!)

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Possibly Osteopetrosis

In terms of diagnosis and investigation as to why my femur broke spontaneously (remember this is the longest, strongest bone in your body and it doesn’t just break as a rule), the Specialists are leaning towards a rare genetic bone disease called Osteopetrosis.

With Osteopetrosis there is a malignant infant version which is horrific and most babies don’t survive. Then there is an adult version which is milder and life expectancy is normal. With this disease the bone mass density is extremely high (mine is) and the bones then become brittle. As a result they either break or develop severe Osteoarthritis.

I’ve had Osteoarthritis in numerous joints and my spine since my mid 20’s so that fits.  Scoliosis of the spine is also part of the disease and again I tick that box. My Specialists think I have been blessed that my first break has only just happened at 49 and I agree.

They can’t rule out more breaks though but we are hoping and praying this is my one and only.

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Yes I Can Swim…Why Do You Ask?

The only reason for not being diagnosed with Osteopetrosis officially at this stage is because I can swim (or at least I could last time I tried a few years ago now!)

According to my Endocrinologist people with Osteopetrosis are unable to swim, due to the dense bones causing them to sink.

My Surgeon is not so sure about that theory so diagnosis is pending…

Anyway, if nothing else it’s interesting to know some answers to some questions may be forthcoming…watch this space!

Update: March 2018……

My left femur remains broken. It’s known as a non union break. Despite numerous surgeries to try and encourage bone growth, my bone disease continues to attack the bone, preventing healing. It even dissolved a bone graft. My Specialists have never seen anything like it. 

In 2016, my right femur developed a mid shaft stress fracture. My Surgeon consulted Orthopeadic and Radiology colleagues as he was concerned a full break was imminent. It was decided the best thing to do was insert an intramedullary rod in my right femur to prevent a repeat of my left femur medical emergency.

Since 2016 I have also had numerous non-healing metatarsal fractures and other complications.

My diagnosis remains as a rare genetic bone disease

My Story

In 2010 I was in my mid 40’s, at the height of my career as an Executive Manager in a major bank.

In April of that year I was getting ready to take 6 weeks long service leave to spend some quality time with my beautiful husband. We were going on a road trip through South East Queensland down to the Hunter Valley in Northern NSW and I was so looking forward to having a break.

On the way home I started feeling really unwell and I just couldn’t shake off an extreme tiredness, joint pain like I had never experienced and abdominal pain. My hands were so sore that even the slightest touch was excruciating. I couldn’t hold my husband’s hand or pick anything up. My hips were so painful that walking normally was becoming difficult unless my husband supported me. We knew something was not right.

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A Long Road Ahead

As soon as we got home we headed for my GP and a whole list of Specialist appointments followed. Long story short, 2 months later I was diagnosed with Rheumatoid Arthritis (RA) after being first diagnosed with Q fever, Ross River Virus and a list of other false positive diagnoses.

My body was not behaving normally and my Doctors and I were to discover over the next 6 years just how abnormal it actually was. I had no idea what lay ahead.

With RA medication on board, I continued to work for another 12 months before my body began to basically break down bit by bit. My last day in the office was Melbourne Cup Day 2011. I was trying to push through the day and getting ready to judge my Departments “Fashion on the Fields” when my Personal Assistant found me in agony in the ladies bathroom and rang my husband to come and pick me up.

From that day my life was never to be the same again.

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In 2011, I was diagnosed with a prolapsed bowel which refused to mend despite 3 attempts at conservative surgery. By mid-2013 we knew we had no choice but to accept that I needed a permanent stoma.

In November 2013 I medically retired and became the “proud” owner of a permanent colostomy. It has been quite a journey with my medical team including a Clinical Immunologist, Colorectal Surgeon, Endocrinologist, Orthopaedic Surgeon, Gynaecologist, Ear Nose and Throat Specialist, Infectious Disease Specialist, Neurologist and Dermatologist, all trying to work out what is causing my health issues.

I have been called “special”, “unique”, “one of a kind” but really they all believe overall, aside from Rheumatoid Arthritis, I have a rare idiopathic disease (a disease of its own kind).

I have lost count of the number of times I have been hospitalised over the past 8 years. I have had 14 surgeries since October 2010, with the prospect of more ahead.

I thought Rheumatoid Arthritis and a permanent colostomy would be an end to what my body was going to challenge me with. I hoped I could settle comfortably into medical retirement with my husband but I soon came to realise that my life was going to be an ongoing medical adventure.

An Unexpected Surprise

In October 2014 my left femur (thigh bone) broke spontaneously. Yes, all on its own, I didn’t fall from a great height or have a major car crash, which is apparently the type of accident I should have been involved in to have the strongest bone in my body break. Mine just broke as I was opening my bedroom door!

It is called a pathological break and my Specialists believe I have a rare genetic bone disease. My bones are extremely dense and marble like and my bone turnover is almost non-existent. We also now know that my bones are dying and much of the soft tissue around my bones is also dead tissue.

12 months after my leg broke, my right femur was also showing signs of disease on MRI with bone marrow involvement so a rod had to be placed in that to prevent an imminent break and repeat medical emergency like we had with my femur break in 2014.

I am constantly dealing with multiple foot fractures and none of my broken bones in my legs or feet will heal. My bone pain is excruciating on a daily basis. My left femur which snapped in two is still broken nearly 4 years later and has been diagnosed as a non-union break. I have been on two crutches since the femur broke and also have a mobility scooter.

The Break

My Left Femur Break – 6th October 2014

Finding Ways to Live with the Unknown

I have a long and unknown journey ahead and surgery after surgery keeps me in a constant recovery state. My bone disease is also attacking my spine and causing severe stenosis and nerve compression.

I still remain hopeful that we will eventually arrive at a more settled way of life even if my prognosis is unknown.

I have been approved for the highest level Home Care Package which includes life long approval for Permanent Residential Care whenever I need it. I am so grateful for this provision and the peace of mind it brings.

In 2015, I decided to start blogging to reach out to others who have found themselves suddenly physically disabled and medically retired from a normal way of life.

Despite my health issues I still choose to have a happy fulfilled life, different yes, but fulfilled all the same. Three year ago I would have thought a stoma was the end of the world. Today I am so relieved to have a functioning bowel.

Five years ago I was facing the fact that Rheumatoid Arthritis was causing radical changes to my life, the biggest being saying goodbye to my Executive Management career and the team I led and loved. My company were so fantastic to me throughout the whole medical retirement process which was such a blessing and I remain forever grateful for their support.

Today I am medically retired and on a permanent disability pension and my husband is my full time carer. My original plan was a healthy retirement full of travel and volunteering and fulfilling a lifelong goal of writing a book. I may not be able to have such an energetic retirement and my leg break and subsequent bone disease diagnosis has brought the travel idea to an end for the moment but I am blessed that I can still write.

I’ll have difficult days like we all do and days when plans and dreams are restricted by health but one thing I know is that if I can focus on counting my blessings on those days, the clouds pass much more quickly.

My biggest blessing is my amazing husband who has walked this journey with me and stands side by side with me today. We have laughed and we have cried over the past six years as each health episode has thrown up new challenges.

We have even managed to laugh at the unpredictability of my health. We can laugh though because we know life can be and is good, even if it is learning to live at a different pace and in a very different way from what is considered “normal”.

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Chronically Content

Despite all that my body has thrown at me, I still have an overarching feeling of being “Chronically Content”

So, how on earth can I feel content, even happy, in the midst of all this?

What’s my secret?

The simple answer is I love my life. My health is just one part of it and my chronic diseases have actually brought chronic contentment in multiple areas of my life.

Let me share some of them with you:

  1.  I spend quality time chatting and laughing with my husband every day,
  2.  I spend quality time writing, something I love to do. I have a blog called “My Medical Musings” and I write articles for “The Mighty”
  3.  I spend the majority of my day reaching out to others through my online Facebook forum, Medical Musings with Friends. Connection with people is so important for my overall well-being and Medical Musings with Friends forum gives as much to me as I give to its beautiful members,
  4.  I get excited about any achievement in my life no matter how small. Making the bed each day and making it look pretty brings me joy….even if I mess it up an hour later as I have to collapse onto it in sheer exhaustion. I still did it and that counts for a lot in my book.
  5.  I don’t dwell on what I can’t do, I dwell on what I can do
  6.  I have a strong faith in God. I see His hand on my life in so many remarkable ways…the main one being that I’m “Chronically Content” despite my crazy health. My faith brings me a sense of peace in my darkest hour that really does pass all understanding!

Whatever your chronic disease or grief circumstances, don’t let your happiness be defined by what has been taken away from you. Think upon the things that make you smile. Grab hold of those happy thoughts and ponder upon them until ideas form that you can realistically put into action.

You may love travel but health prevents it. Get travel DVDs or look at travel books or brochures and dream you’re there. It saves the effort of packing and unpacking so there’s an immediate bonus from my perspective.

You may love to eat out but find cafes difficult to access. Take a drive in the car and park in a beautiful spot to have a picnic with your loved one or friend. I’ve done this with my husband many times and it’s been just a perfect date.

Above all try not to worry about things that may never happen. Life is too short to go there and when chronically ill, finding ways to be chronically content is a much better way to use your energy.

I hope and pray that my story encourages others who are facing an uncertain future and change in life’s direction.

I hope it helps you to find the courage to not give up, but over time learn to accept a new way of life and be brave enough to share your own experiences.

I would love to hear others stories as they are all so precious and we can learn so much from each other so feel free to drop me a line anytime. 💗

Take care, Sam xx

“Don’t let your happiness depend on something you may lose”  CS Lewis

 

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

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

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WEGO Health Award 2018 Nominee