Loving “Moments” of Life

I would have thought that being disabled, and pretty much housebound, life would go slowly. I’d have thought each day would drag and each hour would leave me wondering how to fill my time.

Ha…How Wrong Was I !!

I can’t believe 2018 is nearly over.

What have I done with my year? What makes a chronic illness existence so busy.

As I pondered that question I realised the answer lies in how I spend my moments, not necessarily my days.

I’ve adjusted to my new life by filling it with moments of purpose. In many regards I am working as hard as I was when I was actively employed enjoying a successful career.

My online forum has replaced my old work life. My days are full of beautiful people and amazing conversations, in a virtual sense rather than in the workplace. I have an admin team to care for and 1600 plus forum members to provide a much needed service to.

On top of that I blog, write, manage my health and help my husband care for our home. My health takes up a lot of time with appointments, procedures and surgeries and just overall pacing of all basic physical activities.

Put all that together and hours, days, weeks, months and quite clearly a whole year, just fly by.

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Loving Life

As crazy as this may sound, I’m loving life.

I say crazy because I’m sure many people must think I should be curled up in a ball, rocking back and forth in a corner. I have considered it on really bad days but it’s just not me.

Broken bones due to my crippling bone disease, Rheumatoid Arthritis and associated autoimmune issues, extreme fatigue and a stoma don’t bode well for a “loving life” campaign. But that’s just my flesh and bones. It’s not my soul. It’s not what really matters.

My heart still beats and my brain still works and I am so so grateful for that. Yes, life can be hard and many days out of the 365 per year are not pretty, but moments in those days are.

Moment by Moment

Moments when the pain meds kick in enough to let me write or be active on my forum. Moments when I can do something nice with or for my husband.

They are the moments that are strung together to make the year go fast. They are the moments that complete me. They are the moments that make me love life. They are the moments that cause me to push on and not give up.

This is life. This is my life. I only get one and it needs to matter.

Troubles Are Momentary Too

2 Corinthians 4:17 (NIV)

For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.

When living with chronic disease it can so easily feel as if our flares and high pain levels are unrelenting. Believe me I often feel like that. The pain is real, the disability is real.

However, the excruciating pain I suffer comes in waves. The pain is always high but I’ve adjusted to a moderate level of pain where I can function, in my restrictive way.

The excruciating pain lasts for moments. Sometimes too many moments strung together, but moments nonetheless.

If I think about my days in terms of moments, I can focus on the fact I will get moments when moderate pain allows me to write, to laugh, to listen, to participate in life to some degree.

The moments of severe pain and darkness will be outweighed by the lighter moments….every single time.

What About Days When There Are No Light Moments?

Yes, they do happen but they are rare. Even when I’ve been in hospital, post major surgery, there has still been something to make me smile. A caring nurse, seeing my husband walk through the door with a real coffee in hand or a decent cup of tea, these moments stand out to me.

These little moments of relief manage to squeeze their way into the dark days. We just have to look for them and hold onto them. They offer us hope that bigger, brighter moments are just around the corner.

If you really are feeling completely overwhelmed by your disabled and chronic illness life, it’s so important to seek help.

Professional counsellors can help provide coping techniques and skills to assist you live your best life possible.

It’s not about living in denial or being delusion about the reality of the hard moments. By acknowledging those, we can learn to use them to absolutely savour the good moments.

Life then becomes precious, every single day.

I sometimes think I’m more alive now than when I was healthy, living a crazy rat race existence. I just ran from moment to moment and day to day in my old life and much of it is a blur as I look back.

New Year Moments

As a new year approaches I won’t be making any great resolutions or setting any concrete plans. I have some rough idea of events and tasks which require some effort and thought, but timeframes need to be flexible.

I know there will be tough moments followed by good moments and that’s enough for me.

Afterall, life is like that in both sickness and in health. None of us are immune from the highs and the lows.

How we choose to live with them and through them, makes all the difference.

I know what I’m going to choose. I choose to live for moments of happiness, creativity, community, love and moderate pain. I choose to hold on to hope for bright moments to follow tough ones.

Rather than expecting a perfect life filled with halcyon days, I choose to love and cherish the moments of my life where I can engage with some of the activities I enjoy.

What will you choose?

Sam xx

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

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

I also write @ Blogs by Christian Women

 

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My Writing Year In Review

As Christmas and year end comes around, I’m in a reflective mood.

It’s been a great year for me from a writing perspective. I’ve enjoyed networking with other bloggers within the chronic illness blogging community.

I’ve also connected this year outside of the chronic illness world, with lovely Christian women through Grace Girls and the Salt and Light linkup group.

I’ve enjoyed sharing my story with others. Hopefully through my own experience of living with a chronic, debilitating disease, I’ve been able to impart some tips showing ways to live the best life possible, despite the restrictions and challenges of pain and disability.

As far as my blog is concerned, I thought I’d round off the year by sharing with you the 5 top posts, according to my readers.

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So Without Further Ado…

Here are the posts my readers likefld the best throughout 2018:

Musings And Plans

Chronic Illness Catastrophe Days

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

Embracing Chronic Illness In A Deliberate Way

Finding A Peaceful Kind Of Happiness In A Chronic Illness Life

Plus Two Of My Personal Favourites

These last two are special to me. The first one acknowledges my beautiful husband and his care for me.

The second one is on the subject of healing and how this can be found, not necessarily in a physical sense, but in finding strength to live well with your chronic disease.

Remember To Care For Our Carers…..They Are Hurting Too

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

The Most Popular “Mighty” Article

I’ve been writing for The Mighty for nearly two years now. Over that time I’ve written over 40 articles, many of them originate from a blog post.

At the beginning of the year I wrote a love letter to my amazing husband which was published by The Mighty. They continue to share it on their Facebook page and each time they do, the response is overwhelming.

This will always be my most favourite written piece and I couldn’t round off the year without sharing it here:

To The Amazing Husband Behind This Chronically Ill Wife

Thank You So Much

I want to thank you, my readers, for your love, encouragement and support during 2018. I have so enjoyed reading your comments and making new friends along the way.

I wish you and your loved ones a very happy and relaxed Christmas and I look forward to sharing more with you in 2019 💗

Take care

Sam xx

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

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

I also write @ Blogs by Christian Women

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

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

Please click here to read our Privacy Policy

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Happy 5th Stomaversary to Rudolph and Me!

I can’t believe on the 11th November my beloved stoma, affectionately called Rudolph, is turning 5!

For those of you without a stoma it may seem a strange thing to celebrate. While it was life changing, it was also life saving and I will be forever grateful for the day of my stoma surgery.

Something About November

There must be something about November and surgery for me. I’m about to undergo lumbar spinal surgery in less than 48 hours. It’s funny how your mind begins to think about the logistics of moving post surgery…..or maybe that’s just me. I’ve been contemplating how I’ll have a catheter when I wake up and how relieved I am that I won’t have to think about using a pan or getting up before I’m able.

I then realised another reason for being grateful for Rudolph. No bed pans for that end either. Just the convenience of my stoma bag. All areas covered. See, there really are bonuses to every situation if you look for them.

Rudolph and Rosie

One of the things I am definitely celebrating as my 5 year Stomaversary comes around, is the friendships I’ve made in the Ostomate community.

My closed Facebook support forum, Medical Musings with Friends has quite a few members who also have stomas. We share a special bond, a knowing understanding.

Not deliberately, three of my Administration team have stomas, all of us for varying reasons…..Crohns Disease, Ulcerative Colitis and a Non-functioning bowel. Their friendship means so much to me.

There is one friendship that has always been extra special. We shared the same Surgeon and without knowing it at the time our stomas were created only a few days apart.

Our paths crossed through an online stoma forum quite by chance. Our stories were so similar and we clicked instantly. Our friendship blossomed via texts, phone calls and we eventually had the opportunity to meet in person. What a special day that was!

Over the past 5 years we have journeyed through so many highs and lows of life and all as a result of meeting because we had a stoma. We have also laughed,sometimes cried, over the antics of Rudolph and Rosie.

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Blessed With Time To Decide

I was blessed to be able to have time to make the decision to have a stoma. While I didn’t have a choice, my Colorectal Surgeon very gently led me through a process, where I could of my own free will say to him “I’m ready, let’s do this”.

Not everyone gets that opportunity. While I’m celebrating a positive health life choice, I also am thinking of those who are still struggling to come to terms with such a radical change to their lives.

Many receive a stoma through emergency surgery due to bowel perforations, a cancer diagnosis and other health scenarios requiring urgent intervention. My heart goes out to those in that situation.

My husband and I usually do something special to mark my Stomaversary. This year I’ll be in hospital recovering from spinal surgery, so celebrating will not be at the forefront of my mind.

I believe it’s good to take the opportunity to reflect on life changes. It’s important to me to take a moment, to remember what life was like before my stoma and why having it has been such a positive experience.

If you’re interested in “why” Rudolph is a permanent fixture in my life, you can read the full journey in My Stoma Story, A Happy Ending

Happy 5th Birthday Rudolph and thank you for making my life so much 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.

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

I also write @ Blogs by Christian Women

 

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Chronic Illness Catastrophe Days – How Can We Survive These?

Ok, so the title probably sounds a little more dramatic than where I’m going with this…..but maybe not!!

My regular readers will know I generally have a positive outlook on life, despite my disabling pain and crazy bone disease.

I have accepted my circumstances, I love the things I can do and I don’t stress about the things that are beyond my reach. My disclaimer to this comment is; “on most days”.

There is always an exception in every situation.

Every now and again I wake up to a “Chronic Illness Catastrophe Day”.

On those days, it’s a struggle to keep my head above water. I hate them as they are so hard to manage, no matter how much faith, hope or strength of character you may have.

These are days that happen to all of us with chronic illness and I’m on a quest to work out how best to manage them once and for all!

So What’s A Chronic Illness Catastrophe Day?

These are the days when everything comes crashing in on me. Days when pain levels are so extreme that I want to escape my body. On these days I visualise having a zip opening to let me crawl out from my skin and just have a few hours of relief. Away from pain, away from extreme fatigue.

These are the days when breathing hurts as fatigue overwhelms. These are the days when, despite my normal positive outlook, my mind wants to grab onto less than helpful thoughts. Thoughts of “I can’t” rather than “I can”, constantly shout at me.

These are the days when well-meaning comments from loved ones and friends, are misconstrued as I listen to them. My fault, not their’s. On these days even words of support offer empty comfort. The pain is just too overwhelming and constant to hear or feel anything but thunderous throbbing.

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Finding A Way Through The Catastrophe Cloud

I think to a large degree we need to go with the flow on these “Chronic Illness Catastrophe Days”.

The issue is, left to their own devices, these days can quickly turn into a week, a fortnight, a month and before you know it depression has taken hold.

I think a two-day recovery plan is a good starting point to getting back on track. It’s also designed as a plan that can be re-cycled as needed.

So, let’s assume this is day one of what could potentially be a “Chronic Illness Catastrophe Cycle”.

This is the hardest day to cope with but it’s integral to make a start on a fight back plan on Day One.

Day One – “The Catastrophe Day”

  • Stop Fighting – I’m aware that sounds contradictory when we are talking about a “fight back plan” but I tend to fight against these days and push my body. That’s not what my body needs. It’s generally screaming to try to make me listen and stop. It needs rest, complete rest and I need to surrender to it.

 

  • Rest and Retreat – When we stop fighting, our minds calm a little and sanity begins to return. Rest and retreat means to stop, lie down, sleep if you can or just do something that helps provide a focus outside of your body. For me it means lying on the bed and writing or watching a relaxing TV show. Sometimes it means no noise at all. TV off, music off and just deep breathing in a quiet comfortable setting.

 

  • Test The Waters – After you’ve retreated for a couple of hours, it’s time to test the waters. Imagine dipping your toe in the ocean to see if the temperature is comfortable. This is the same concept. If you don’t want to end up in a “Chronic Illness Catastrophe Cycle”, day one needs to have a bit of movement. Slowly get up from your bed or chair, or from wherever you had retreated to and just see how you feel. If everything seems overwhelming again, return to your retreat position and try again in an hour. Once you feel a little stronger from your retreat session, it’s time to move to the next stage.

 

  • Re-connect – when having a “Chronic Illness Catastrophe Day” it’s hard enough connecting with ourselves, let alone others so be careful in this stage. You’re  probably feeling vulnerable and grumpy and contact with others could quickly turn into a less than positive experience. My biggest tip here is…..make a coffee, tea or your drink of choice and quietly sit and sip it while you think about reconnecting with the world. Once you are feeling a little more settled, check in on your favourite FB support group, text a special friend to say hi, or if you have family at home, engage in some light conversation. No big decisions or discussions should take place on these days.

 

  • Rest and Retreat again – Well Done! You’ve made wonderful progress with re-connecting. These are difficult days and not ones to ignore and push through so it’s time to rest and retreat again….until tomorrow!

 

Day Two – “The Recovery Day”

Day Two is an important day. You will likely wake up feeling a little better than the day before but also tired and vulnerable. It’s a day you need to move through very slowly and carefully.

  • Start Slowly – You don’t want to undo the great work you did yesterday. You need a slow start. No rushing out of bed!!

 

  • A “No Agenda” Day – Day 2 needs to be agenda free. The whole aim of this day is to keep your stress levels low as this helps manage pain. You need to move through the day doing things that help you stay relaxed, while spending more time upright than in bed. Lingering in bed, for too many days in a row, can affect your mental health and exasperate physical pain. Getting up on Day 2 is important to help the recovery process. Remember yesterday was the  “Chronic Illness Catastrophe Day”, today is the recovery day.

 

  • Self Care – If ever there was a day to indulge in a little self-care this is it. Whatever works for you within your limitations do that. Sit in the sun and get some fresh air. Have a hot shower and feel the water working on your inflamed body. Make a special lunch treat or have Uber treats deliver your favourite food. Whatever you do, today is not the day to do chores around the home or household admin tasks. If possible don’t even make phone calls that are medically related. Today is about recovering from the “Chronic Illness Catastrophe Day”.

 

  • Rest and Retreat again – Day 2 needs to be a short day. You’ve done so well to get up, move a little and engage in some self-care activities. You’ll still be dealing with many symptoms and issues from your “Chronic Illness Catastrophe Day”, so you can’t risk over doing things. An early night resting in bed, indulging in watching a DVD or favourite show, is a “must do”.

The Morning After

A “Chronic Illness Catastrophe Day” is a little like getting over a hangover (not that I’d know anything about that course!!)

Day 3 will feel like the morning after a big day out. You need to still be kind to yourself but it is important to start re-connecting and re-engaging with the wider world.

If your catastrophe day is lingering, because of your pain and symptoms, Day 3 is a good time to review your mental and physical health situation. Ask yourself some basic questions;

  • Do you need to see your Dr?
  • Do you have new symptoms?
  • Do you think you can push through the day and see how you go?
  • Are you feeling depressed?

If you answered yes to any of these questions, Day 3 is action day. Make an appointment to see your Dr or Counselor. Don’t let the issue linger. Taking action will help you to feel more in control and that alone will help start you on the road to recovery.

Thankgoodness It’s Over!

Hopefully for most of us a “Chronic Illness Catastrophe Day” is just that….one day with a second day to recover.

Don’t try to push through these days. If we do, ultimately we end up in a worse state.

If your body is screaming, it’s doing so for a reason. It needs help and you are the first point of call to help it. Please listen and respond with love and care.

I hope your “Chronic Illness Catastrophe Days” are few and far between. When they do come, I hope you will know that you are not alone and they will soon pass with a bit of careful management.

Take care

Sam xx

 

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

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

I also write @ Blogs by Christian Women

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

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

Please click here to read our Privacy Policy

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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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Dealing With The “Great Expectations” of A Medical Appointment

It happens to all of us with chronic illness. We look at our calendar and see that appointment date sitting there. Looming in the future. It offers such promise. We feel a little excited at the prospect of what may come from it.

Hope. It offers hope.

It’s still 4 or 6 weeks away but it is indelibly printed on our mind. It’s like we have a post it note stuck to our forehead, which of course only we can see!

So Many Scenarios

If you are anything like me, you’ll probably think of many different scenarios of what could happen in this looming appointment. So many you could write a novel!

As you close your eyes to sleep at night, those scenarios will begin to play out in high definition colour.

Each scenario has its own unique outcome;

  • We have a cure – the ultimate outcome.
  • We have a new medication to take away all pain – I’d be very happy with that.
  • We can run more tests to see what else is going on – hmmm…that could be interesting!
  • We need to do more surgery – Noooo!!!!
  • We can’t do surgery – Thank goodness!
  • I need to refer you – Oh No, not another Specialist.
  • We need to admit you to hospital to stabilise you – I’m so over being in hospital, let me out of here!
  • We can’t do anything more, no cure, no treatment, we are sorry – Me too!

The Day Before The Big Event

The anticipation and excitement of thinking about your upcoming appointment, starts to fade a little the day before.

Nerves set in and the reality dawns on you that you have to physically get there. That’s hard work. You’re chronically ill and in pain. Going anywhere is difficult. Sitting in Specialist waiting rooms is not an ideal past time.

Random thought: Why are their chairs so uncomfortable and so unsuitable for the chronically ill?

The Big Day Arrives

You thought the day would never come but before you know it’s here.

You know you need to push through physically to get there. You have your own military style precision plan to get from your home to your Drs office. You just have to do it!

You make it there, sometimes with adventures you could do without along the way. It doesn’t matter though, what matters now is finding out which scenario will play out.

You have your notes, your questions, you’re ready.

No turning back now. Hope remains.

“Rejoicing in hope, patient in tribulation, continuing steadfastly in prayer.” Romans 12 v 12

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The Main Event

Months, weeks and days have been spent thinking about and planning for this one appointment. All that effort and it will soon be over before you know it!

If it’s a new Specialist you may get allocated 45 minutes (plus a lovely account to pay). If it’s a Specialist already on your team, 15 or 30 minutes is about the norm.

You get out your list eager to tick off every last item. In my experience points one and two on said list often open up a conversation which make points three to ten vanish into thin air. Sometimes those points are covered off during the discussion. That’s a bonus!

Your mind is quickly trying to take in the scenario the Specialist is placing before you. Is it your worst case or best case scenario? Hmm….you’ll have to think about that later.

You can feel the appointment coming to an end so you look at your phone again, just to check you’ve covered all items on your list.

Your Specialist stands up. It’s over! Time to go.

All that anticipation, all that thought, all that planning.

It’s not over though really. There is still the aftermath to come.

The Aftermath

Sometimes the aftermath is a positive experience. Your expectations were met. You have a care plan put in place. You have a follow-up appointment in a few months or maybe sooner. You leave with an exhilarated feeling and want to celebrate. Love those appointments!

Sometimes the aftermath is a world of pain. I’m not talking about a situation where your Specialist was unkind or uncaring. I know that can happen and it breaks my heart to read of those experiences.

For the purposes of this blog post, all Specialists are really good at what they do and genuinely care.

I’m talking about a situation where the scenario that played out was one of your worst case scenarios. Perhaps you were told ” I’m sorry, there is nothing more we can do but provide ongoing support”.

That kind of scenario needs time to process. Grief and all the wonderful stages that come with that process, begin to wash over you.

It is perhaps a turning point in your life, a crossroads. Changes you thought were way in the future might now need to be considered in the present.

Hope begins to fade!

Dealing with the “Great Expectations” Let Down

So what next? I could say dust yourself off and get on with it but we all know it’s not as easy as that.

For one thing you have invested so much emotionally in the lead up to the appointment, the let down of a worst case scenario hits incredibly hard.

So what can you do post appointment? I have a few ideas that may help with finding the positives in what seems like the end of the world right now;

  • Talk to someone you trust; your partner, a friend or family member or post on a closed support forum where you feel safe.
  • Don’t make rash decisions.
  • Sleep on it. Often the worst case scenario won’t seem quite as devastating the next day.
  • In the morning make a list of what was actually said at the appointment. Writing it down makes it real and helps you to digest it.
  • Next to each discussion point create an action item. For example, your Specialist may have said a Pain Management Course might be helpful. If that’s the case your action item might include;
    • Research online courses
    • Make an appointment with my GP to discuss a referral to a Pain Management Specialist
    • Ask others on support groups for recommendations
  • Keep working your way through the list until you have an action plan that is achievable and that helps give you some control over your situation.
  • Let hope return. The action plan will give you renewed purpose. When we remain in what we think is a hopeless situation, we can make a worst case scenario even harder to deal with.
  • Surround yourself with positive friends both online and in person. While you want empathy after a difficult appointment, you don’t need people who will fill you with stories that will just further lead you down a path of despair. You need understanding, support and encouragement.

Take Time Out

Sometimes the best thing to do when our “Great Expectations” have been dashed, is just to take time out.

Depending on your level of disability, maybe a mini holiday to relax or a shopping trip to indulge in a treat. Perhaps lunch or dinner with your partner or close friend somewhere with a beautiful outlook, or a drive in the country.

If like me your disability renders you housebound, there are still options. A bit of online shopping, watching a good movie while indulging with your favourite chocolate cake.

It really doesn’t matter what you choose to do, it just needs to be something non-medical that makes you feel alive.

Specialist appointments are par for the course with chronic illness. We need to develop coping strategies to help us through the difficult ones, as you can guarantee they will happen.

If you have a medical appointment looming that you have been thinking about for months or weeks, creating numerous scenarios, take a step back. Think about what strategy you will have in place if your “Great Expectations” don’t come to fruition.

Being prepared might just help you engage better in the appointment and it will certainly help you cope better in the aftermath.

Take care

Sam 💞

 

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

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

I also write @ Blogs by Christian Women

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

Please click here to read our Privacy Policy

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WEGO Health Award 2018 Nominee

This post was shared at the Salt and Light Linkup Group

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.

Please click here to read our Privacy Policy