Little Things Do Matter….Especially When Living With Chronic Illness

We often think of God’s plans for our life in terms of grandiose ideas. We may think the little things in our life are just not as important as the big-ticket items.

In my experience, little things do matter in the big scheme of things.

When I medically retired 4 years ago, despite being disabled, there were many things I could do then I can’t do now.

I retired early due to Rheumatoid Arthritis and a non-functioning bowel, which resulted in a permanent colostomy. At that stage I had no idea I had a rare bone disease simmering away, ready to launch an almighty attack.

My Story was going to become quite complex over the space of a very short time.

I’m actually glad I didn’t know. Sometimes I think it’s best to live in the moment with a dash of blissful ignorance about the future.

Thankfully God does know our future and I believe He always has a plan available for us at just the right moment. We simply need to be watching, waiting, believing and listening for it. We then need to be prepared to act on it.

Do Not Worry

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?

Matthew 6 v 25 -34 (New International Version)

Whether sick or healthy, none of us know what the future holds on a day to day basis. While planning is a good discipline to have, learning to appreciate life’s precious moments each and every day, is possibly even more important.

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Appreciating The Little Things

So let’s get back to what I could do when I first medically retired. I could:

  • Still, drive a car
  • Walk through a shopping center with a walking stick in one hand and my husband by my side
  • Go to cafes and restaurants and sit relatively comfortably for an hour
  • Attend church services at least fortnightly
  • Cook a meal or bake some goodies.
  • Potter in the garden
  • Go to a hairdresser salon and get my hair washed, cut and blow dried. Colouring was too much as it meant being there for over an hour.
  • We could go for short holidays not too far from home.

Basically, they were all the little things in life that can so often be taken for granted….until they are gone.

Adjusting to Losing Some of Life’s Little Things

Fast forward to today. These are the things I can no longer do:

  • Drive. Even being a passenger in a car causes excessive pain. We just make it to my hospital visits which are a 35 to 40 min car trip.
  • Walking is difficult. I can walk outside of the home using 2 crutches, or a walker but can’t walk further than 100 meters without severe pain. I need a mobility scooter for longer outings but I don’t have the energy for these because of constant broken bones that don’t heal and severe bone pain. The vibrations of the scooter aggravates the pain.
  • Leisurely cafe visits are no longer possible. I can’t sit for more than 20 mins because of the pressure seats place on my broken legs and the damage to my spine from the bone disease. I use cushions but they only allow me to get through the 20 mins. Without a cushion, I couldn’t do it at all.
  • I can’t go to church for all of the above reasons.
  •  A Hairdresser salon visit or a trip to a supermarket to quickly pick up a few things is out of the question.
  • We can’t go away on holiday.
  • Cooking meals or being in the kitchen for longer than the time it takes to make a cuppa, or get a small snack, isn’t possible.

So, I’ve had to adapt. It’s amazing how we can adapt and find ways to do things differently when we have to.

Finding Ways to Adapt

If life takes a turn in direction, as it does with chronic illness, it’s so important to keep doing the things that make us happy, that keep us contributing to life and give us a sense of accomplishment.

I’ve found ways to clean my home. I navigate my house holding onto furniture and I can dust. My crutch is an amazing mop. If I throw a wet flannel on the floor and place my crutch on it, I can walk around slowly, crutch in hand, washing the tiles.

I can do all our grocery, clothes and household goods shopping online. I love doing it like that and I’m not sure I’d change back if I could.

We have turned our outside patio area into our own little French Provincial cafe. When I’m not well enough to go out for coffee and cake, we simply have it in the midst of our beautiful pot plants.

My husband and I have church at home. We watch Songs of Praise and listen to a recording of the morning sermon from a wonderful preacher. We sing hymns and Christian songs. Our souls are fed.

Thankfully my husband is an amazing cook (one of God’s wonderful provisions given well in advance of my need).

God Cares Even About The Little Things

But even the very hairs of your head are all numbered. Fear not therefore: ye are of more value than many sparrows.

Luke 12 v 7 (King James Version)

So that brings me to my hairdressing needs, something very important in a girl’s life, although a small issue in the big scheme of things.

I’ve had 3 beautiful mobile hairdressers over the past 2 years. The first one decided to take a permanent salon job after 6 visits. She was lovely so I was disappointed but I quickly managed to find another one in our area.

She was wonderful and worked quickly which was perfect for my situation. At the second visit, she told me she was pregnant but would be working through until a month before her baby was born. That would give me time to try to find someone else. Or so I thought. There were, however, no more mobile hairdressers in my area.

On her last visit, I told her to cut my hair very short. I thought that way I could at least park the problem for a while. We had discussed that she might return to work in 6 months so I was happy to wait and see how things worked out.

She gave birth to a beautiful baby boy and let me know she wouldn’t be doing mobile hairdressing again. Completely understandable.

So, I was left with hair that hadn’t been cut for 6 months and while it was healthy enough, it was at that awkward stage where I couldn’t manage it. Not ideal when disabilities make grooming a challenge on the best of days.

I spent hours searching the Internet in the hope that a new mobile hairdresser had opened a business. There was no one else in my area offering this service so I was really at a loss as to what to do.

My husband even went to a local “Just Cuts” salon to try them out for speed, comfort and wait times. They were good and quick but there was no guarantee I wouldn’t be kept waiting when we arrived, so we had to rule that out.

I was almost ready to give up when I quietly prayed, “Lord, I don’t know what to do. I need your help”.

Within minutes of that short, heartfelt prayer, I had the thought “why not contact my original mobile hairdresser? Maybe she’s left the salon that head-hunted her and is doing mobile work again.”

I found her old website which was encouraging. So, on the wings of a prayer, I sent her an email.

Well, bless her, she rang me within an hour to say she’s not doing mobile work but a good hairdressing friend of her’s has just moved from New Zealand to Australia. Amazingly she lived close to my house.

Even more amazing, she was just starting up a mobile hairdressing business and looking for clients!!

My old hairdresser was as excited as I was. She explained to me that she never looks at the old email address that I had contacted her on but for some reason she just decided to. She saw my name and remembered me straight away so clicked on my email.

God was definitely caring about the hairs on my head that day.

She texted her friend asking her to look after me. Her friend messaged me later that day to set up an appointment for the following week.

Don’t you just love it when hope is restored in what looked like a hopeless situation?

Here We Go Again

Fast forward six months and my latest lovely hairdresser advised me that she had taken a teaching role and wouldn’t be able to continue with mobile hairdressing.

“Oh no, here we go again”, I thought.

I completely understood but I had no idea what I was going to do. I literally had exhausted my mobile hairdresser options.

What happened next was truly amazing.

Within 5 minutes of the text from my hairdresser, advising me she couldn’t continue, my phone beeped. The familiar sound indicating a new text was a welcome distraction from my disappointment. I was looking forward to a text chat with a friend of family member as I picked up my phone.

As I clicked on the text envelope I couldn’t believe what I was reading! The text was from my lovely hairdresser who had given birth to her little boy 6 months earlier. The same hairdresser who had decided not to take on mobile clients anymore. If I’m honest she was always my favourite hairdresser.

The text was short and sweet….oh so sweet to read!! She had just been thinking of me and wondered how I was. She wanted me to know that she was available to come and cut my hair again if I would like her to!!

Talk about timing. Talk about answered prayers, even before a prayer had left my lips.

I was so excited, by the magnitude of the timing of that text, I nearly forgot about my broken legs and tried to run to tell my husband. Not my finest moment but I didn’t care.

What provision. What a gift.

God definitely cares, even about the little things, of that I am sure!

Little things do matter.

Sam xx

A version of this article was written for  Blogs by Christian Women. It is an honour to be a regular contributor.

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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Healing Comes In Many Forms…..Even With A Broken Body

October 6th 2014. A day I will never forget.

It’s the day my femur broke.  (Click on the link to read about that extraordinary day)

It was a life changing day. A day that would start me on a journey with a rare bone disease, so rare that even Specialists would stand and scratch their heads at the craziness of it.

None of my medical team know why I have it, what caused it and none of us anticipated the aggressiveness of it.

All we know is my bones continue to get denser and my bone turnover is negligible. A combination that causes major bones, like my femurs, to snap in two as if I’d been in a major car crash. It causes my feet to fracture while doing nothing more than wiggling my toes in bed.

My spine is now affected with severe spinal lateral and central canal stenosis, compressing my spinal cord. My hips have avascular necrosis and both of these conditions have progressed from mild to severe in less than a year.

Other bones throughout my body throb with severe pain and cause functional disability.  I can’t keep having scans on every new threatening fracture or damage, so we wait until something breaks, or the pain from a new area severely impacts quality of life further.

Still Broken

Four years on and my left femur is still broken. It is official diagnosed as “non-union”. The bone disease will continue to prevent it from healing.

It’s almost become the least of my issues though as the disease has started to aggressively attack other areas of my body.

I’m used to my non-union femur. I know its pain, its restrictions, its abilities. It’s familiar. It’s become a part of me.

I’m the same with my foot fractures. They are familiar. I expect them. I know how to deal with them and I basically ignore them. If one becomes displaced I know to seek treatment but if they stay aligned, all is good. No one can do anything so there’s no point worrying.

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Healing Comes In Many Forms

When we think of healing, generally we think of getting better. We expect a person no longer has their disease.

Healing can absolutely come in that form and it’s something to be celebrated when it does.

What about diseases that have no cure and no treatment? As a Christian I believe God can heal and does completely heal some people of all kinds of diseases.

Why some and not others? I really don’t have the answer to that.

I do think healing can come in surprise packages. We sometimes miss out on seeing a miracle because we have an assumption as to what the miracle should look like.

Let me explain what I mean….hopefully I’ll make sense.

I’m not physically healed and I don’t think that I’m going to be. I do however believe that I have been given a very special gift of healing.

The ability or gift to accept my circumstances. I’m not weighed down by them. I’m happy, content and excited about the purpose I have in my life, despite my very limited physical abilities.

Isaiah 41:10 ESV “Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand”

A Perfect Peacefulness

I have a peace that allows me freedom from anxiety. It doesn’t mean I don’t worry about things from time to time but I don’t get distressed. I’d describe any worries I have as cautious concerns. They are healthy and necessary in order to make balanced life decisions.

To me this is the greatest gift of healing given my disease. Stress and anxiety worsen pain. My body screams with pain 24 hours a day. If I wasn’t able to be at peace with my condition and remain free from unnecessary anxiety, I honestly would be in major trouble.

I absolutely thank God for giving me a “peace that passes all understanding”

Philippians 4:7 ESVAnd the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus”

If you’re feeling a little swamped by your life circumstances, your chronic illness and disabilities, take some time to pause.

Are you expecting complete healing? Are you so focused on being perfectly well you are at risk of missing out on the gift of healing in an unexpected way.

My disease has allowed me to connect with so many people from around the world, through my blog and my support forum. It’s allowed me to spend time writing and perusing this life long passion.

It’s allowed me to spend quality time with my husband who I absolutely adore.

Sure, it’s taken things from my life but even when we are healthy, life can take us in directions that require enormous sacrifices and loss.

Becoming Abled

If we can stop looking at our disease as “unfair” and “cruel” and stop thinking “why me”, our outlook can change.

“Why me” can become “why not me”. Sickness is a part of life. Accepting it as your new reality, can help change your disabled world into an abled world.

Peace brings clarity of thought. Peace is the opposite of war. If we stop fighting against ourselves by accepting our new life, warts and all, peace will come.

When peace comes an unexpected healing comes and that’s an amazing gift.

That’s a gift I pray you will also receive.

Take care

Sam xx

 

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

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

I also write @ Blogs by Christian Women

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

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

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The “Chronic Illness” Law of Diminishing Returns

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My title might suggest a study in economics but rest assured it is not where I am heading with this.

The Law of Diminishing Returns 

Refers to a point at which the level of  benefits gained is less than the amount of money or energy invested.

When you live with chronic illness, over time your expectations, of yourself and your medical team in particular, begin to diminish.

In my case it’s not because I don’t trust my medical team or because they have disappointed me. That couldn’t be further from the truth. They have all been amazing in their care, support and passionate desire to try to find treatment options for me.

Expectations and tangible outcomes can begin to diminish the longer you live with a particular disease. Especially when all known treatment options have been exhausted.

I know my disease is progressive, rare and my disability is steadily increasing before my eyes. There is no escaping that reality. I wake up to it everyday.

Ever the optimist, I do however wake each morning hoping that I might get a slight pain reprieve or be able to achieve a few things on my “to do list”. That’s called hope and on some days that hope is realised.

The Diminishing Return of Doctor’s Appointments

It’s been a while since I have had hope of good news or expected any great outcomes from my medical appointments. Usually they are routine, follow-up type appointments. Just checking blood tests, looking at latest x-rays and all agreeing;

“yes, the legs still broken and the disease is progressing. Sorry still no treatment or cure”.

It’s not quite as matter of fact as that but it’s a pretty close depiction of how things go.  I thankfully have a great relationship with my Specialists and GP, so we also throw around ideas and have a good chat. In general I look forward to my appointments as these people have become my support crew and my friends.

When I first started out on my rare bone disease journey, every appointment had a huge return. There was research opportunities where I was a willing guinea pig for science. My attitude was sign me up for anything if it might help others and possibly provide me answers. Unfortunately these research opportunities didn’t even provide a diminishing return. Instead they came up with negative or irrelevant results time and time again.

My Orthopaedic Surgeon was full of hope in the early days. His enthusiasm was contagious, as he outlined his strategic surgical plans to give my broken femurs every chance of healing.

Each appointment in the early days was following up my recovery post surgery and planning the next surgical adventure. They were full of action.

There was also the bedside “in-patient” catchup with my Specialists, as I seemed to be in hospital more than at home for three years running.

In the early days of my diagnosis, my Endocrinologist was searching for answers and organising bone marrow biopsies and a myriad of other tests/scans, hoping to uncover a cause and treatment plan.

As one year turned into two and into three and into four, more and more open doors began to slam shut. The hope for treatment, a cure or even some answers as to why this was happening, all began to diminish, appointment after appointment.

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Is Anyone To Blame?

It’s a natural response to want to find reasons for why things go wrong in life.

Who’s to blame?

We ask ourselves so many questions when chronically ill. Did I do something wrong? Is my medical team keeping something from me? Has someone made a mistake? Is there still an answer out there and should I keep searching?

All valid questions but they are also questions that can send us on a wild goose chase. A chase that ultimately will do nothing but leave us absolutely exhausted. Especially if we have done everything possible to find answers, seek second opinions, or maybe even third or fourth…..there comes a time when we have to stop.

The Chronic Illness “Law of Diminishing Returns”, At Some Point, Begs to be Acknowledged and Accepted.

So Many Questions, So Few Answers!

Why bother with future appointments? Why not give up?

Why?

I think we owe it to ourselves to reassess our medical needs once diagnosed, especially when all treatment has been exhausted or is in maintenance mode.

We owe it to ourselves to still have a team of medical professionals available to support us and to monitor our health.

Things can change over time. New symptoms can arise or old symptoms can worsen and require attention. We may need documentation filled out for disability support etc. We need a medical team on our side who are keeping abreast of our case.

Future appointments are important but they can be approached differently as we take into account the “law of diminishing returns”. We don’t want to waste our money or our energy on multiple appointments that wouldn’t achieve anything.

It’s definitely worth talking to your Specialists about managing your time and energy in regards to your medical commitments.

I have four main Specialists who I need to juggle at the moment. An Orthopeadic Surgeon, Endocrinologist, Clinical Immunologist and Gastroenterologist. There are others who I see every 12 to 18 weeks as months.

My Orthopaedic Surgeon used to see me every 3 months, then every 6 months. It’s still every 6 months as he has to keep an eye on my non-union femur, as the pole could break.

For the next appointment we are going to have a phone consultation. He has sent me the x-ray form and I’ll get that done a week before we chat. He doesn’t want me running around unnecessarily and I so appreciate that. He also expects me to contact him if my condition worsens beyond what I can handle. I can do that by phone or email.

I see my Endocrinologist every 6 months as she manages my bone disease and is still constantly looking for answers. She coordinates everyone else too. She is amazing via email and I can contact her anytime.

I always have phone consultations with my Clinical Immunologist. His building is too difficult for me to navigate. He manages my medication, especially Prednisone dosing, so I check in every 3 to 6 months. He leaves that up to me.

My Gastroenterologist is new to my team due to my recent Gastroparesis diagnosis. I’m seeing him every 6 months and his appointments are in those early stages of hope and promise. They too will undoubtedly come under “the law of diminishing returns” eventually.

Don’t Be Disheartened

If you are feeling like you should be getting more from your appointments and come away feeling frustrated, think about them in light of “the law of diminishing returns”.

Are you expecting more than is possible? Do you have all the answers you are going to get? Is it time to accept that you have a chronic illness?

A chronic illness generally doesn’t go away and there is only so much our GPs and Specialists can do about that.

Much of the solutions lie with us. Accepting our circumstances, making the relevant life changes to manage our symptoms and disabilities…….these are some of the key elements to our ongoing treatment plan and wellbeing.

So if your chronic illness journey is at that point where you are putting so much effort and energy into running around searching for answers, with a diminishing return from each appointment…..give yourself a break.

You’ve done all you can do. It’s not your fault. It’s not your Doctor’s fault.

It’s time for some self-care.

Sam xx

“The sufferings of this present time are not worth comparing with the glory that is to be revealed to us.”
—Romans 8:18

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

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Clinging To Hope….Maybe Tomorrow Will Be Better

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

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

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

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

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

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

It’s Just Plain Exhausting

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

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

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

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

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

Hope For The Future

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

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

I soon cease dreaming.

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

Hope Returns – No Matter What The Future Holds

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

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

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

Hope returns.

I hear a still small voice saying;

“Maybe tomorrow will be better”

Sam xx

 

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

This post was shared at the Salt and Light Linkup Group

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

I also write @ Blogs by Christian Women

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Taking Time To Understand Others

How many times have you jumped to a wrong conclusion about something?

How many times have you inadvertently assessed a situation from the entirely wrong angle?

How many times have you completely misjudged someone?

Without even realising it, we all easily do this on a regular basis.

Tiredness, busyness, listening to others views and opinions, are all factors that can colour our thinking, often in a subliminal way.

The Need to be Understood and Believed

One of our strongest themes on my chronic illness support forum, Medical Musings With Friends, is the desire for people with chronic illness, especially invisible illness, to be understood and believed.

The conversations are often about how others, who we deem “healthy”, have no idea of the pain and suffering someone with chronic illness deals with on a daily basis. The invisible illness so easily leads to misconceptions and hurtful misunderstandings.

In some cases we are probably right that others don’t understand what they haven’t experienced themselves, but are they being cruel for no “apparent” reason?

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Everyone Has a Story

Let’s for a moment flip that thought on its head.

What if the grumpy person behind the coffee counter questioning why you don’t work, or the person complaining that they wish they could lie in every morning like you do etc, actually were in pain too?

What if their pain was also invisible and they felt no one cared or understood them? What if they were suffering from depression, grief over the loss of a loved one or chronic fatigue?

What if they were undiagnosed and no one believed them? What if they felt resentment when they saw others who were acknowledged for their pain and suffering?

What if they were suffering domestic violence and felt helpless and hopeless? What if they were being harassed at work?

Every life, every person has their own story. It’s never simple. Even when someone appears to have everything and have it all together, they will still have layers of untold stories.

The Disgruntled Nurse

I had an extremely disgruntled nurse during one of my hospital stays. She felt more like a prison warden and she actually scared me. She was often on night duty which seemed to make her scarier.

On Day 3 of this particular hospital stay, I decided I needed to stop being so anxious about her being on duty. That night she came into my ward in her gruff manner. She was taking my obs and in order to break the wall of silence, I asked her how her day had been.

I got a grunt type answer.

I persevered and asked did she enjoy nursing? Well, that was the key question!!

Within moments she opened up her life story. She loved nursing but she had just broken up with her husband…..she was grieving so much. Her story was a complicated one.

I asked simple questions to keep the conversation going and she stayed sitting with me for 30 mins and we chatted like old friends.  Like me, she had also had broken bones but not as a result of a disease.

She told me she was so upset by my story she wasn’t sure how to talk to me about my disease and my non-healing fractures. It turned out it was why she had been so quiet over the previous days when she was around me.

I had no idea how deeply she cared. My own prejudices about her demeanor, had caused me to create a persona for her that couldn’t have been further from the truth.

From that point on she would pop into my room every afternoon, before her shift started, to say hello. We would chat about how I was but more importantly we’d chat about how she was.

My scary prison warden had softened. She still looked a little frightening but she was a scarred, flawed person…just like me, just like you, needing someone to take the time to understand her needs.

 “Do not forget to show hospitality to strangers, for by so doing some people have shown hospitality to angels without knowing it”

Hebrews 13:2 New International Version (NIV)

Are You Ok?

If you are faced with animosity or misunderstanding from someone as you go about your daily life, try to stay calm and think about what might be going on in their lives. Ask them if they are ok?

It’s amazing how conversations between two strangers can evolve, full of genuine understanding, when we decide to turn our focus to caring for the other person.

By simply asking, “Are you ok?” when you feel someone is misunderstanding you, the real story behind the harsh comment might reveal a very real need, not dissimilar from your own.

Sam xx

Luke 6:31 New International Version (NIV)

Do to others as you would have them do to you.”

 

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 and the  Grace Girls Facebook Group

This post was shared at the Salt and Light Linkup Group

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Meet The Admin Team

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Medical Musings with Friends started in January 2017. I was resting one afternoon in my bedroom, contemplating the new year ahead and wondering what possible purpose my life could hold, as my body kept spectacularly attacking me from every angle.

I have a Rare Genetic Bone Disease with multiple bone breaks, ongoing surgeries, severe spinal stenosis compressing my lumbar spinal cord, Rheumatoid Arthritis, Permanent Colostomy due to a bowel prolapse, Fibromyalgia, Sjogrens Syndrome, Trigeminal Neuralgia, an Idiopathic Inflammatory Nerve Disease, plus a few other issues. It can be slightly overwhelming when the list adds up.

I suddenly had an idea, a slightly crazy idea, that maybe if I set up a closed forum for people with chronic, complex and rare diseases it could be an extension of my blog.

A place where a few people could gather to provide support and genuine understanding. A place where it was ok to “muse” about how complex life gets when you have more than one illness.

A place where you know others wouldn’t get scared by what they read but would feel your pain and understand your struggles. A place where other chronic illness bloggers and writers could share their work and words of wisdom.

A few people, maybe 50, or so I thought.

Within 6 months we had over 1400 members and 7 moderators assisting me. We continue to grow our membership weekly which still amazes me.

Unbelievable!! What a blessing, what a purpose, what an honour and privilege, to be trusted to provide such a large group of people a place to find true friendship, support and understanding.

So, I thought it was time to introduce more formally my beautiful team of moderators. They have each provided a short bio to tell you in their own words a little about themselves, plus a photo.

I can’t thank them enough for their personal support and commitment in joining me in this crazy musings journey. They are just the best, most warmest, caring people you could meet and they all volunteer their time while living with their own complex chronic diseases.💗💗

Sam Moss

So, here’s me…I live with my beautiful husband Peter, who is also my full time carer. We live in a stunning Bayside village in South East Queensland, Australia. When I’m not busy chatting with you all on the forum, I’m usually found blogging here on “My Medical Musings”  or writing articles.

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

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

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Sam Moss – Founder/Administrator (Australia)

 

Nik Watson

I have lived with Auto Immune conditions since I was 11 years of age and they add up to SLE (Lupus), RA, Osteoporosis and Ménière’s disease.
I’m known as Nik Puppykins…lover of two fur baby dogs. I have two, which, in conjunction with my gorgeous Mum, light up my life every day.

(Yes… I live with my wacky, meddling, inspiring, gorgeous, loving Mum ❤️)
My life is positively wonderful and full,  despite many episodic hardships over the years.

My motto is:

“One life…live it now, well, with joy and love and inspire others to do the same”
Family, friends, puppy cuddling, photography, market wandering, coffee, sushi, blue cheese, travel (and probably a few other loves I’ve forgotten!)..complete me. 😘😘

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Nik Watson ( Australian Moderator)

 

Dave Head

Hello there my name is Dave, I’ve been married for 9 years, my wife and I have a 7 year old daughter as well as a 5 year old son.
Before the age of 21 I was rather healthy. In 2003 I was admitted to hospital and diagnosed with Ulceritive Colitis which after a few weeks in hospital it was determined I would require an Ileostomy. The Ileostomy is no permanent which is something I don’t mind at all.
In 2007 I was diagnosed with Multiple Sclerosis. This was a significant changing point in my life to say the least. I have been on three treatments for my MS, one of which did cause seizures at least one confirmed Gran Mal.
In 2012, I began to develop issues with my skin on both legs, arms as well as my back. After a number of doctors mis diagnosed the issue I was given the proper diagnosis of Pyoderma Gangrenosum. A very rare skin disease likened to having Ulceritive Colitis on the surface of the skin.
On a daily basis I have issues with my MS, my right shin has lifelong significant damage from the PG. I have come to a point I cannot work Full Time as it simply takes too much out of me. I began a blog in January 2017 in the hopes of sharing my experiences while helping others through their challenges and to understand they are not alone.
I am truly grateful for being a member of such an incredible group of individuals. We all have commonalities and are here to support, encourage and sometimes just listen.
Below are the links to my blog as well as Social Media feedsbforbthosebthat may be interested in learning or asking more.

https://livingyourlifethroughtime.wordpress.com
Instagram~ davehead40
Twitter~ @DaveHead40
Snapchat~ https://www.snapchat.com/add/davehead40

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Dave Head (Canadian/US Moderator)

 

Erin Scott

I’m originally from Southern Ontario, Canada, but moved to England almost 7 years ago, where I met my husband. I used to teach, and gained a MSc in Psychology, hoping to move into a field I could handle with my health. I’m not able to work right now though. I love tea, music, literature and writing, dogs, making cards, and I’ve recently started painting!
I have chronic pain issues, gastroparesis, and migraines with brainstem aura (basilar).

https://achronicspoonful.wordpress.com/

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Erin Scott ( Canadian/US Moderator)

Courtney Soutar

Hi Musers, I’m Courtney and I live in North East Victoria. I have Crohns (with an ileostomy) and Fibromyalgia. My loves include dogs, tea and my family. I try and live by the motto of ‘laughter is the best medicine’❣

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Courtney Soutar ( Australian Moderator)

 

Brigitte Oram

My name is Brigitte but everyone calls me Brig. I have 3 kids (2 teenagers and a tween going on twenty!)

I am generally a positive person, even though I deal with multiple health problems on a daily basis (including a Colostomy named Rosie, insulin dependent Type 2 Diabetes, Anxiety/Depression and the aftermath of Pulmonary Embolisms and an Ischemic Stroke).

Up until 2 years ago, I worked as a Support Teacher specialising in learning support and special education. I absolutely loved it, but I became too unwell and was spending a lot of time in hospital.

I love to make others laugh and have been told I have a cheeky sense of humour. I also enjoy arts and crafts, board games, adding to my owl collection and listening to music.

I feel very blessed and proud to be a part of this awe-inspiring group, I think you’re all so brave and amazing. Thank you for entrusting us with your stories and I look forward to getting to know you all.

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Brigitte Oram (Australian Moderator)

Nicole Loffler

I’m Nicole, happily married wife to Ben and mother of two remarkable young people (18 + 21) from Western Australia. My health journey started over 20 years ago, when I was diagnosed with Ankylosing Spondylitis and Ulcerative Colitis. I also have Gastroparesis, Fibromyalgia, Sciatica, Lung Disease and Functional Neurological Disorder.

I’m also in the unique position of being carer for my beautiful daughter Alysha, who has significant health issues as well. It is heartbreaking seeing her so unwell and in pain, but it has given us an extra special bond.

I’m an avid cook, addicted to cookbooks and am a huge MasterChef fan. I grew up on a farm and love animals, especially my beloved 17 year old cat. I enjoy scrapbooking, sewing and puzzles.

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Nicole Loffler ( Australian Moderator)

Clare Rayner

Hi, I’m Clare. I live in a suburb south of Manchester, England. I love Medical Musings with Friends because it is supportive, helpful, amusing at times and is so good to be in contact with other people with a lot of chronic conditions! I look forward to helping support you.
The list of my medical problems is getting too long but fundamentally, I have had bad infections since aged 19, was diagnosed with immunedeficiency at 30. By this time I had had a lot of surgery and lung damage. I was physically fit and used to bounce back. On intravenous treatment, I had far fewer infections. Then I developed ulcerative colitis. I also have Hypermobile Ehlers danlos  syndrome, causing spinal problems, mast cell activation disorder, low blood pressure, gut and bladder problems.  In recent years, I have had sepsis which at the moment has left me fighting infection all over the place. I don’t know how I’m alive sometimes, but I am, and I do understand the stress of living with and trying to juggle health problems! I am medically retired but I teach two half days a week in term-time at the university (communication skills etc-communication is one of my passions).
As some people have out written down their mottos, I thought I’d tell you mine: “never get up with the lark, get up for a lark.” That might be English slang, so fundamentally it means I don’t like getting up in the morning, but I do like to look for something funny  in each day. I love going out for coffee, occasionally visiting an art gallery, and visiting family and friends when I can. Love animals too especially dogs and cats. My hobbies are painting, playing the flute and going to the theatre. I haven’t been able to do them for years but I haven’t give up hope. That’s my other motto…”never give up!” .

 

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Clare Rayner – ( UK Moderator)

 

If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join Medical Musings with Friends. Feel free to also share the link with any others you know who have a chronic illness and may benefit from a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.

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Gratefully Taking Nothing For Granted

“Life is too short, take nothing for granted”

These are catch phrases we have probably allowed to roll off our tongues at one time or another.

Both have so much meaning and I hazard a guess, a slightly different meaning for all of us.

On my Facebook Support Group, we have a weekly segment called “Thankful Thursday”. Members share a few things they are grateful for in their lives, in that moment, day or week.

It sounds easy enough but all of our members suffer from debilitating chronic illness. It can be incredibly hard not to be overcome by pain and symptoms.

Nevertheless, we do all find something good in our lives to share and celebrate. It’s a lovely uplifting segment that I look forward to each week.

As I was contemplating the things I was grateful for this week, I realised I was really struggling to honestly feel grateful at all.

Am I Grateful Or Am I Taking Things For Granted?

I’m absolutely exhausted with my constant pain levels. I know I’m mostly housebound but life is still way too busy.

I spend a good 40 hours a week on my Forum. I write, I network with other bloggers, spend time with my husband, do household tasks and look after our finances etc. Pretty much a full-time job while living with a debilitating disease.

I’m incredibly grateful that I can do all of the above. So grateful that I can use my mind as it helps distract me from my physical pain.

In that moment as I was thinking about my exhaustion and all that I was juggling, I realised there was something I was most grateful for. It was something I never want to take for granted.

A “Mind Full” Moment

My mind, my brain, my ability to think. I am so grateful for it but even more than that…..I found myself saying;

I want to use my mind while I can, I don’t want to take it for grantedI may not always have it”

Right there, right then, I felt every depth of gratefulness for being able to use my brain. Not just intellectually but in many other ways.

I can dream, I can remember wonderful moments in my past. I can manage my disease better by thinking through the consequences of my actions.

I can write, I can sing. I can enjoy TV shows because my brain allows me to follow story lines.

I can have lengthy chats with my husband while relaxing together.

I can make phone calls and organise household administrative tasks.

I can read and research.

I negotiate my health care and work in partnership with my medical team.

All of this and more is because my mind, my brain functions.

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Loss Causes Us To Re-Evaluate Everything

There are many things in my life that I don’t take for granted and many that I do and shouldn’t. We all do though.

  • I didn’t ever really consider losing the use of my legs but I have.
  • I didn’t ever really consider losing my independence but I have.
  • I didn’t ever consider losing my taste and smell but on most days I have lost both of these senses.
  • I didn’t think I would ever have a permanent colostomy but I do.

Loss causes us to re-evaluate everything. That’s not a bad thing, especially if it leads us to focusing on what we still have.

My gratitude for having a functioning mind is huge. There’s an underlying reason for that.

My beautiful Grandmother died from Alzheimer’s Disease and one of my Aunties is currently battling this insidious disease.

Does that mean I’m likely to also have the disease later in life? Who knows. It does however make me so aware of the gift of a functioning mind and that makes me never want to take it for granted.

Gratefully Take Nothing For Granted

I remember having viral pneumonia, 6 months before I was to be married, many, many years ago. I was in hospital and my parents and fiance had been told my Specialists  were incredibly concerned as I wasn’t responding to any treatment.

I was so focused mentally on getting well for my upcoming wedding, I didn’t for one moment consider not surviving.

What did concern me was that I couldn’t speak at all. I had never lost my voice like that before. As a singer my main concern was would I ever be able to sing again. I was also a Bank Manager at the time so talking was pretty important too.

I eventually recovered but it took 3 months for my voice to return. It was a scary time and from that moment on I have never taken my voice for granted.

If you are struggling with your chronic disease and finding it really hard to find anything to be grateful for, think about what you can still do. What part of your body is still working?

Think about what it would be like if that part of you ceased to work.

It won’t be long before you have something very tangible to be grateful for. Something that you will realise you can’t ever take for granted.

Before long you too will be gratefully taking nothing for granted.

Take care

Sam 💞

Bible Verse

When times are good, be joyful;
 When times are bad, consider this:
God made the one as well as the other, so people won’t seek anything outside of his best.

Ecclesiastes 7 v 14 (ISV)

 

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

This post was shared at the Salt and Light Linkup Group

 

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