The Tides of Chronic Illness Life

I was sitting at our local cafe this week, which is situated on a Point overlooking the Bay and beautiful Islands beyond. It really couldn’t be more idyllic and I am blessed to live so close to such a gorgeous place on Australia’s east coast.

As my husband and I were sipping our cool drinks and soaking up the gentle sea breeze, on what was a mild summer’s day, I was fascinated at how quickly the afternoon tide was beginning to roll in.

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Only moments before the water was still and there was no sign of change. All of a sudden ripples could be seen and the mud flats began to disappear before my eyes.

I rarely get out due to my health but this is one special place that I can manage on a good day and it’s perfect to sit back, relax and contemplate life. My thoughts turned to how quickly the tide changes in our lives when living with chronic illness.

One minute everything can be calm and stable and the next we are inundated with symptoms flaring, numerous medical appointments, x-rays and scans, blood tests, poking and prodding, emergency trips to hospital, feelings of bewilderment and concern. The tidal waves keep loudly crashing around us until the crisis is over and the seas are calmed.

I have one goal this year. Stay on calm waters! I’ve had too many years of tidal waves crashing over me with my health. I know most of that wasn’t within my control but I have learned some lessons that I’m hoping will keep me out of the firing line of sudden tidal changes.

As I looked to the right of where we were sitting at the cafe, there was a green tree standing tall and safe as the tide began to creep around it.

My aim is to be like that tree this year. Standing above the creeping symptoms of my disease and not allowing them to swamp me and drag me under.

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So while I know some health events will definitely be out of my control, my plan to simplify my life and avoid anything unnecessary includes:

Reduce Medical Appointments 

I have 6 Specialists on my medical team plus a GP.  I have been seeing 5 of them every 3 months. With the agreement of my Drs, less appointments means less running around and more time to enjoy “non-medical” activities. This year we are reducing to 6 monthly appointments for each Specialist. We have spread these throughout the year so I am not overloaded at any one time. If I do need to speak to them in between they are happy for me to email, phone or make an extra appointment.

Reduce Regular Tests

I need regular blood tests to monitor a number of my autoimmune diseases as well as regular xrays, bone scans and bone density tests to monitor my rare bone disease. In consultation with my Specialists we have reduced my blood tests to bi-monthly and my x-rays/scans to every 6 months.

I’m feeling a sense of relief just writing this!

Avoid Surgery Unless an Emergency 

I’ve had 7 surgeries on my legs over 3 years. I’m exhausted. In the last two I aspirated while under general anaesthetic. My Surgeon and I have agreed “no more surgery” unless a life threatening emergency.

Know Your Disease 

This is probably the biggest key to simplifying my life with chronic illness. I’ve been diagnosed with Rheumatoid Arthritis and Sjogrens Syndrome for 8 years now and it is pretty much under control. It flares but I know that we can’t change my medication because of the risks that has for my bone disease.

We have reviewed every possibility in terms of appropriate medication and we’ve brought in other Rheumatologists for consultation. We have exhausted our options.

I just have to manage my autoimmune disease flares conservatively with rest, heat packs and pain meds. It is what it is.

My Bone Disease is my biggest concern. It is completely unmanageable and has a life of its own. I have however discovered what is an emergency (pathological major fracture or pole breaking in my leg) and what is something I just need to live with (constant foot stress fractures, muscle atrophy worsening, muscle bleed).

I’ve also learned with my bone disease, any significant increase in pain or symptoms will usually reduce to manageable levels within 4 days.  If not I need to call my team asap.

Get Out More

With less appointments I won’t have to conserve my energy to be able to get to them. To prepare for an appointment, I can’t go out for the week prior and I need at least another week to recover. With the amount of appointments and surgeries I’ve had over the past 4 years, we have only been able to get to a cafe a handful of times and we have only taken my mobility scooter out twice since I got it 7 months ago.

That has to change and it now can.

I will be able to go out on better days and know that I have time, days or weeks if necessary, to recover from the “non-medical” outing. Such a lovely thought.

When I feel “the tides of chronic illness life” washing over me, as they no doubt will from time to time, I’m going to think about that green, tall tree standing upright as the tide creeps in around it.

I’m going to remember that there are things I can control and have changed.

I might get my feet wet but I won’t get swamped.

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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Reflect and Restart

I really wasn’t sure if I wanted to reflect on 2017. Was it worth reflecting on my life with chronic disease? Did I achieve anything? Did I want to relive what at times felt like days and months of overwhelming pain?

One of my coping mechanisms, that helps me live well with my rare disease, is to live in the moment. I forget about the pain of yesterday and start each day looking forward to a better day or, at the very least, good moments within the day.

I have been encouraging my Forum members to reflect on the past year and think about the year ahead. I really do believe that it’s helpful to do that in preparation for a New Year.

I’m not a fan of New Year resolutions, particularly when living with chronic disease, as life is just unpredictable with so many things out of our control.

I am however a fan of being open minded to possibilities to grow and learn. I’m  really happy to get involved in new adventures, especially if opportunities present that are within my capabilities.

So, given I’d asked others to reflect, I couldn’t, in all fairness, expect them to do that if I wasn’t prepared to.

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With some trepidation I started reflecting and jotting down the highs and lows of my year. I decided to start with the good points and I was pleasantly surprised, as I walked back through 2017, at just how much I had achieved.

When living with chronic disease, we are so often overwhelmed with brain numbing pain, we can feel quite useless. The reality can be so different. Much to my surprise, reflecting on my past year revealed a very different reality to the one I had running around my head.

It’s been a good year overall:

The Highs

✔ Launched my online support forum, Medical Musings with Friends (my biggest achievement since being medically retired)
✔ Started writing for The Mighty
✔ Joined Chronic Illness Bloggers Network
✔ Further developed & expanded my blog
✔ Accepted as a permanent Writer for Blogs by Christian Women **Check out my latest article –  A New Year Promise
✔ Met so many amazing people from the confines of my home through all of the above…such a blessing
✔ No major surgeries for the first time in 6 years.
✔ Approved for a Level 4 care package… I’m on the national register waiting list
✔ Received interim Level 2 care package approval to be put it place by Feb 2018 ( I just received the letter advising me) This is to ensure I can get some care while waiting for the full Level 4 package to become available.

The Lows                                                 

✖ My November Hospital Stay  and Ketamine infusion. It didn’t work and if anything made me worse
✖ Came down with severe viral infection post infusion /hospital stay that I still can’t fully shake
✖ Bone/ Fracture pain remains my constant battle

My 2017 Takeaway…..Just because you are in pain and homebound, it doesn’t mean your life can’t have purpose. It doesn’t mean you can’t have realistic dreams and with passion, find ways to step out in faith and make them happen.

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2018???

I have no idea and I actually quite like that. I’ll continue to blog and write and dedicate my time to administering my wonderful forum. Outside of that, I’m just going to take one day at a time and if opportunities present to do more, and I feel they are right for me, I’ll grab them and enjoy them.

So my 2018 is a case of “watch this space”. We’ll find out together how this next chapter of my life unfolds. I’m actually feeling excited about a new year. It’s the perfect time to push the restart button and create new achievements and experience special moments.

Happy New Year Everyone!

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.

 

 

A Merry Little Chronic Christmas

I was taking a little blogging break but I started musing about Christmas this morning and well… here I am again!

As Christmas fast approaches I imagine most of us, in the chronic illness community, are musing about what we want to realistically achieve over the next two weeks.

For those of us with Chronic Illness it can be an incredibly overwhelming time. Just trying to be happy for others, when your body is screaming at you, is enough to make you want to run and hide.

Even if, like me, you have a super quiet Christmas for two planned, there are still concerns. Will I be able to function on the day? Will I manage to stay out of hospital?

No amount of pacing or planning can ensure my body will do the right thing. I will pace though and my husband and I have removed all expectations. We will go with the flow and it doesn’t matter if it turns out to be a struggling day does it? Does it?

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Hmmm…..let’s be honest….it does matter. I’d be kidding myself to say it doesn’t. It matters a lot to me. I want my husband and I to enjoy Christmas dinner at the very least. He sacrifices so much without any complaining so I want him to enjoy turkey with the trimmings.

I want to feel as pain free as possible on the day so I can enjoy opening presents and chatting to family on the phone. I’d like the energy to look forward to phone calls.

I want to have some energy in reserve to really enjoy the Christmas DVD we’ve chosen to watch on Christmas night. I don’t want to be wishing it would be over because I can’t find a comfortable position for my broken bones.

Then there’s the things I miss. I miss not being able to travel to see my Dad & his wife for Christmas. They are so close but so far and that’s really hard. I miss not getting to a Carol Service and Christmas Eve/Day Church Service. I miss not being able to go to large shopping malls and enjoy the Christmas atmosphere.

Even for those of us who don’t suffer mental illness, the lead up to Christmas can be a melancholy time. It’s important to acknowledge all those feelings. They are real, important & very, very normal for the chronic illness sufferer.

If you are feeling a little melancholy….you are not alone.
My hope & prayer for us all is that whether surrounded by loved ones or home alone,  we will all have a merry little “Chronic” Christmas Day, no matter what it looks like, when it finally arrives.

Lots of love 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

Christmas Expectations

It’s on its way! There is no stopping it! Christmas is coming!

That thought will either excite you or leave you trembling with trepidation. There may be an in between reaction but generally the Christmas Season and the lead up to the big day is forefront of mind by mid November.

I love Christmas. First and foremost I love the reason for the season. I love that we are celebrating the birth of Jesus. My Christmas pasts were filled with preparing Sunday School classes for the Christmas Eve Nativity play. Choir rehearsals for Carols in the Park. Helping my husband prepare Orders of Service for all the Christmas services so that those who attended, who weren’t usual church goers, wouldn’t feel lost and could participate and relax.

I had rehearsals to attend for my annual Christmas Eve Service solo performance of “It came upon a midnight clear”.

In between all that I was Christmas shopping, wrapping presents, decking the halls, baking our Christmas cake. I was also working full-time and involved in numerous Christmas celebrations at work.

Every year we would decorate the Banking department I managed. We’d put on Christmas treats throughout December for the 350 staff. Morning teas, afternoon teas, team parties etc.

I set up a department Christmas choir at work and complete with singers, guitarists, a violinist, bass player and trumpeter, we moved through each level of my departments building, spreading Christmas cheer  through song, like the Victorian Christmas carolers of old. So much fun!

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On Christmas Day I would head to church in the morning with my husband. After the service we headed together into my work, where we would hand out Chrismas gifts to the staff on duty. We’d help set up a Christmas buffet lunch for everyone to enjoy and then we jumped in the car for a 2 hour drive to spend Christmas with my family.

It was full on. It was focused on giving and celebrating. It was joyous and rewarding on so many levels.

Fast forward to today and those wonderful memories remind me that so much has changed. My love of Christmas remains. My joy in celebrating the birth of Jesus is even deeper. My body, chronic disease and disability however prevent me from participating in those wondetful Christmas past activities.

So that could sound like the end of a very sad story. It’s not though. While I loved that full on Christmas celebration, I equally love the quieter relaxed Christmas that is my new norm.

I remind myself how blessed I am to have experienced such joy sharing Christmas so actively with so many. I remind myself how blessed I am now to have a wonderful husband to spend a quiet romantic “Christmas for two” with.

If I had expectations of myself that were unrealistic, this season would be awful. I’d either push myself beyond my capabilities and end up sick or in hospital or I’d just feel miserable thinking of all I can’t do.

This is my 4th Christmas season with my bone disease. The first two Christmas seasons following my leg break were an adjustment period. I grieved my Christmas pasts. I missed not being able to go to church. I missed family and friends. My beautiful step family came from interstate on the second Christmas post my leg break and that was so special. It helped me have the best of both worlds that year. We had a quiet Christmas Day as they arrived Boxing Day. It was a lovely new memory created within my new limitations. It was such a timely visit as it helped me adjust my Christmas Expectations further from old life to new life. It was a gentle bridge.

Last year I really embraced our “Christmas for Two”. It was one of the most special times Peter and I have ever had. We had no set expectations. We decorated the tree, we bought beautiful food, I set a table for two with all the trimmings, we listened to Carols, opened way too many presents ( I went a little overboard on online shopping) and we watched a Christmas movie in the evening.

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There was no set agenda. If we ate at 3pm it didn’t matter. If we didn’t get dressed up it didn’t matter. If I was really unwell or struggling with pain, it didn’t matter. Expectations were non existent. All that mattered was that we were together, relaxing and celebrating in whatever way we could. All that mattered was that Christmas Day, the most wonderful day of the year had arrived.

 

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

 

Chatter, Clatter & Clarity

One of the wonderful things that has come from living with a chronic disease is finding new networks & friends in the chronic illness community.

Before becoming disabled & unable to work, I had no idea about blogging & online support forums & believe it or not I never even had a Facebook account.

Fast forward to today & I am now fully entrenched in a whole new world of blogging network groups & online support groups, either as an active member or as an administrator/owner. Add in Twitter accounts linked to my blog, Facebook pages for my blog, my personal Facebook account, writing for The Mighty & other publications & all of a sudden my sedentary, chronically diseased life is full of non stop chatter & clatter.

From morning ’til night I am involved in some way in one of these “chatter” type activities. I love it. There is no denying that. I love sharing, learning & supporting. However, even when you enjoy something there is still the danger of overload & burnout.

I have to constantly rest my body because of my physical disability but what about my mind? Do I rest that enough?

I asked myself that question this morning & very honestly answered, “No, I don’t”.

I wonder how many others in the chronic illness community who are bloggers/writers, administrators or active members of support groups, are feeling like their minds are just a little too full of chatter & clatter?

As I “quietly “mused upon that question, clarity began to surface.

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It’s ok to switch off. It’s ok to have a “chronic illness” free day each week. In fact to do so will mean that you will add more value to conversations the following day. You’ll approach situations with better clarity.

It’s ok not to blog for a week or two. It’s ok to step aside from forums that you perhaps feel are not right for you anymore or they have just served their purpose.

It’s ok to say “No” if asked to be involved in something new within the chronic illness community that would just over stretch you.

It’s ok to commit to one or two things solely & just give them your all. In fact it’s probably better to do that.

Turn down the dial on the chatter & clatter. Listen to the quietness when you do that. Take a deep breath & just enjoy that moment when you let your mind switch off from the social media world.

Ahhh…it’s so refreshing. Clarity is a wonderful thing.

I’m going to make some changes. I love my forum & that’s my number one priority. I do though need a day off once a week & I’m going to take it. No set day as I want the freedom to go with the flow a little, after all I’m medically retired so surely the regimented lifestyle should be a thing of the past.

I want more time to quietly write. Writing helps me relax. For me it is a reflective process but when there is too much chatter & clatter filling my mind it’s hard to even think of what to write about. Thinking time is essential for clarity to emerge & writers block to be broken.

So I shall still happily emmerse myself in the chatter & clatter of the chronic illness networks & communities that I love. However, I will now also be making every effort to ensure I take time out each week, to clear my mind & enjoy some clarity of thoughts.

If you are feeling like chatter & clatter is overwhelming you, I’d encourage you to switch off for a moment. Think about how you can better manage your time & involvement in social media activities & networks. Assess what’s working for you. Is it still relevant to your needs? Do you need to make changes? Is it adversely affecting your health?

Give yourself permission to seek some quiet space. I’m so glad I have. It has been such a refreshing experience to have a reality check & make changes to how I manage my writing commitments, my blog & forum.

I feel like I can breathe again in the quiet times of no chatter & clatter. I finally feel like I have clarity😊

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

I also write @ Blogs by Christian Women

 

 

 

The End or the Start of a New Beginning?

I’m lying on my bed resting my legs & watching the sunset outside my bedroom window. It is stunning & although I’m in pain, it lifts my spirits & makes me feel very blessed to be alive.

It’s been a busy week. Hectic actually, well hectic for me. Nothing like my old working week looked like of course, although my family have been laughing at me this week & saying that with my forum & writing I’ve managed to create a new full-time job for myself.

That’s a good thing though. A really good thing. It’s been over 3 years since I medically retired & it has taken that long for me to reinvent myself, so to speak. I really wasn’t sure what I was going to do in my medical retirement. When I first left work I had Rheumatoid Arthritis & a permanent colostomy but I had no idea that I was about to experience the full force of a rare bone disease. That onslaught came 10 months after I retired.

My original plans of a quiet medical retirement with outings on good days, perhaps a bit of local travel within Australia & some daily exercise with walks around our beautiful Bayside suburb, all came crashing down the day my femur broke in two.

Two years of surgery after surgery & countless hospital stays, didn’t really provide me with the time or energy to think about what I could do with my life, particularly given that my physical disabilities had become non treatable,  permanent, progressive & incredibly restrictive.

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2017 has been a good year. Not because my health has improved, it hasn’t. In fact it’s got worse. My disease is really out of control but my Specialists made a decision late 2016 to avoid further surgery this year to give my body a rest. I was being given the gift of time. Less appointments, no hospital stays, no lengthy surgical recoveries.

2014 to 2016 is a complete blur. I can’t remember much about those two years at all. In stark contrast, 2017 has given me time to think with a clearer head. No constant effects of general anesthetic fogging my brain. What a relief!

Yes I have severe pain, constant fractures, extreme exhaustion & increasing mobility issues but it’s been a delight to be home & just go about my days at my own pace. I’ve enjoyed sunrises, sunsets & all the hours in between.

I’ve also finally been able to reinvent myself. I’m too young to just do nothing. My brain runs at a million miles an hour. It needs to be active & I need a sense of purpose & to feel like I’m still contributing to society in some way.

I’ve never been someone who was content to just focus on leisure activities. Even as a child I was always working on a project of some kind. At school I would finish assignments early & be given extras to do for the fun of it. I know that sounds kind of sad but believe it or not I wasn’t a nerd & was even part of the “cool” group at school, or so we thought!

I’ve always had a strong sense of commitment & responsibility to make a difference in some way & that wasn’t about to be squashed by chronic disease. It’s just who I am, how I’m wired I guess.

My dream of writing began to take shape as my blog became more established. Writing opportunities presented & I became an ongoing contributor at The Mighty. I joined the Chronic Illness Bloggers Network  & have been inspired by other bloggers all writing to educate readers about specific diseases &  share ways to live the best life possible with their health issues.

My greatest love though & the thing that keeps me the busiest is Medical Musings with Friends, my online support forum for people with chronic & complex diseases. I love it. I love the members. Their stories are so precious, their support of each other so genuine. Keeping this forum positive & relevant is my major daily focus. It is such a blessing & honour to be able to serve it’s members each & every day.

As well as the forum members this wonderful opportunity has also brought with it my team of co-administrators. This team are such an amazing support to me & we have all become great online friends.

I had no idea 3 years ago what I was going to do with my life. It’s so easy to think that chronic & complex disease is the end of life.

It may be the end of life as you know it now but it can be the start of a whole new fulfilling life. That process takes time, even years but don’t lose hope. Keep dreaming & thinking about what you can physically & mentally cope with and eventually you too will reinvent yourself.

The end will be the start of a new beginning!

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

 

 

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This link will take you to all the submitted blog posts at the RA Blog Week 2017

Seasonal Musings

September marks the start of a new season. A time of change. A reminder that nothing is stagnant. Life in particular has twists & turns, both good & bad.

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Whether we have good health or chronic illness, life has seasons. Things will happen that are not connected with our chronic disease. They are just normal life events.

However, living with chronic illness adds a complex layer to these normal seasons of life. The good times can seem intensified as we know what it’s like to experience the depth of pain & we also so often have to miss out on special events because of our illness. So when life is good, it feels extra good. It can feel euphoric.

However when life throws curve balls at us (not health related) we can, if we are not careful, make them feel larger than they really are. We are already experiencing health battles with constant pain, fatigue & niggling concern about our health & the impact it will have on our future. This can easily make us less tolerant of even the ordinary difficult seasons or events that interrupt the smooth flow of daily life.

An argument with a loved one, the inconvenience of an appliance breaking down, someone on the phone being less than helpful etc, can quickly become catastrophic in the life & mind of those battling chronic disease.

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If you are experiencing a season when you feel like everything is against you, just take a step back for a minute. Sit quietly & think about the issue that is distressing you. Is it as bad as you think?

Is it that it just feels like the last straw but in actual fact the main issue is that you are just too tired to deal with it?

By taking time out to stop & think calmly about your difficult day or season you might surprise yourself & find you are actually able to think of a way to handle it, without it being blown out of proportion & without it causing you undue health repercussions.

On the flip side, if you are experiencing a season of joy & good times, enjoy every minute. 🌟🌟Those times are priceless & deserve to be celebrated, especially for those battling chronic disease.

I hope & pray this new season brings you much joy, even with the challenges that chronic disease will always bring. Just remember to try & keep everything in perspective & stop & breathe. The title of a well known book comes to mind… ” Dont Stress the Small Stuff”😊

Take care

Sam xx💗

 

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