Change

Dealing With Disease And Disappointments

~ Sam ~ 2 Comments

Disappointments come to us all. They are part of life. As hard as they are to endure they can make the special moments in life seem even more precious. They also often teach us valuable life lessons.

Despite that knowledge, we still need to live through life’s disappointments. We need to find ways to survive them.

While no one is immune from disappointments, when you live with a chronic disease they can sometimes feel like the absolute last straw.

The Disappointment Scale

I’m not going to pretend I have any amazing solutions to dealing with disappointments. I have however, definitely had quite a bit of experience with my chronic illness creating chaos and unexpected life changing twists and turns.

I’m in the middle of a series of disappointing circumstances at the moment. Sometimes they seem like a gift that keeps on giving and not the welcome kind.

Disappointments tend to have a scale in my world.  They are either minor, moderate or major.

Let me give you an example of where my current disappointments sit on my scale;

  • Mild – Unable to help my husband decorate for Christmas because I’m recovering from back surgery.
  • Moderate – Unable to spend a lot of time with our family recently when they visited from interstate. Again because of recovering from spinal surgery and the pain of my bone disease.
  • Major – We have to sell our home in the New Year as my medical expenses continue to spiral due to my chronic illness.

Categorising disappointments does a couple of things.

Firstly, it identifies them which helps me understand why I might be feeling a bit melancholy.

Secondly, it helps me begin to work on a change of mindset in relation to my disappointments.

Thirdly, it creates a call to action, where needed, to begin embracing changes required.

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Turning Disappointments Into Opportunities

Now not all disappointments will become an opportunity for change in a physical sense.

They can be used to change how we think about a situation though and that provides opportunity for personal growth.

So here is how I’m approaching my 3 disappointments. Keep in mind I have to work at this and so will you with your own scenarios. You can’t just flick a switch and all disappointments will magically be gone.

So, my responses to each disappointment are:

  • Mild – I’m so grateful I have my husband to decorate. We are keeping it all simple this year so I can help him with a table top tree. I’ll be able to reach it without damaging my back or hindering surgery recovery. I keep reminding myself in the big scheme of things this is a very minor disappointment. I can let it go.
  • Moderate – I so wanted to spend more time with our family. It’s hard to shake this disappointment off. I need to hold onto the memories of the special times we did spend together. The love and laughter that filled our home when they visited still remains and when I think of that a huge smile fills my heart. Moments may be small but they can be full of so much quality and that’s what counts. Changing my mindset to one of thankfulness for those precious moments, does make a moderate looming disappointment become milder. That’s progress which is what matters when dealing with unavoidable disappointments.
  • Major – This one is not easy. I’m not super attached to the bricks and mortar of our home but the thought of physically moving is awful. I’m not opposed to renting, which is what we will need to do, but the thought of a lease not being renewed after 6 or 12 months and further moves ahead….it petrifies me. Physically I’m just not capable. My body needs security yet the irony is it’s my body that is forcing us into this situation. Ongoing medical bills, needing a low set home and space to move around with mobility equipment more easily, are all real needs that are creating this major disappointment.

Tackling A Major Disappointment Head On

I’ve looked at my major disappointment of needing to sell our home from every angle. If I analyse it any further I’m sure I’ll go mad!!

There is no other solution but to accept it. I will feel emotional pain with this disappointment. It’s a normal healthy response to a life changing decision, forced on my husband and I, due to chronic disease. It’s not easy to swallow.

But it’s not impossible.

Moving towards it little by little begins to make it my new reality. We’ve picked the listing month to put our home on the market. We’ve found an agent we like, trust and who will ensure my health and disability are accommodated throughout the selling process. We have a huge sense of relief about that.

We have a rough idea of where we will rent, the cost, the type of home and availability. We are praying we will find a landlord who is open to long term tenants.

Every now and again we think about buying another home but our budget doesn’t stretch to a house that accommodates our needs, so we have to accept that door is closed.

I must admit I keep peeking in the “closed door” just to make sure but I keep getting the same answer.

Acceptance Alongside Disappointment

As we begin to walk through our disappointment, by acknowledging it and looking at ways to deal with it, acceptance will come alongside and begin to provide clarity of thought and new direction.

It almost becomes a partnership. The hurt and disappointment eventually turns to the hope and opportunities that change can bring.

Chronic Illness will always bring us unexpected and unwanted packages. How we deal with these can make a difference to both our physical and mental well being. Allowing disappointments to linger for longer than necessary can so quickly drag us down.

If you are experiencing a season of disappointments I hope my “Disappointment Scale” of mild, moderate and major, helps you work through how best to approach life’s challenges.

Feel the pain, acknowledge the consequences of the disappointment and begin to look for ways to think differently about the situation. Where possible make plans to take action to implement necessary changes.

Disease may make disappointments more difficult but, with a change of mindset and a base plan, I so hope you find it’s not impossible to deal with them when they arise.

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.

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

I also write @ Blogs by Christian Women

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

Please click here to read our Privacy Policy

This post was shared at the Salt and Light Linkup Group

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WEGO Health Award 2018 Nominee

 

Suddenly So Surreal

~ Sam ~ 18 Comments

When you’ve lived with Chronic Illness for a number of years, at some point, you adjust to a new way of living. You eventually find a new norm.

While you might expect a few highs, lows and some disease flares along the way, generally life evolves into a settled and comfortable pattern.

Until it suddenly, without warning, doesn’t anymore!

Sometimes after years of living a new and well-adjusted life, something changes. Something that causes your disease to suddenly seem so surreal.

Something that threatens to once again create a world of chaos and disorder.

Something that will force you to find another new norm.

Surreal and Scary

My rare bone disease is the biggest concern in terms of progression and worsening disability. I have known that since the outset.

It’s insidious. It attacks without warning and when it does, it breaks my bones and refuses to heal them. If it doesn’t break them it destabilised them, causing excruciating pain as the bones die.

I thought I had a good handle on the nature of my disease and in general I do.

However, the latest attack has been so severe every aspect of my life needs to be reviewed.

It’s surreal and I need to admit to myself……it is scary.

In the space of 2 months I’ve gone from being chronically disabled, using crutches and a walker to mobilise, to severely disabled, with the very real possibility of being permanently in a wheelchair. Permanently unable to do some of the simpler day to-day basic care tasks without help.

My pain levels in my lower spine are currently unbelievable. They are beyond anything my broken femur threw at me. The consistent throbbing is almost audible.

So far conservative treatment has failed and even my recent lumbar laminectomy/decompression surgery may not deliver the desired results.

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Big Decisions At Every Turn

Big decisions are confronting me at every turn.

I know I will find a way to adjust. At the moment though I am being swamped in a sea of surrealism.

My issue is the life my husband and I currently live, doesn’t fit a wheelchair bound scenario.

Our home is all wrong for a start. We need a low set home and it needs to be a little smaller and manageable.

The thought of making such a huge change in our lives, while I’m looking down the barrel of more surgery and a long recovery, is so daunting. Even without the prospect of surgery, my pain is just so constant I need stability, not change, to help manage my situation.

I’m not physically capable of doing anything to help with a house move. I can thankfully organise anything that’s thrown at me, so I’ll be focusing on using this skill to facilitate any necessary changes.

Before any of that can happen I have to shake off this surreal slump I’m in.

Shake It Off

Don’t worry, I’m not about to break out in a Taylor Swift song.

I’m going to work through a process of how to shake off this surreal situation and bring it into the world of realism. Better still, I’m planning on making my new reality my new norm, as quickly as possible.

So here’s my plan:

  1. Allow myself to feel the shock and horror of my situation. Denial of these feelings won’t help me move on.
  2. Take a little time out from normal activities to digest what’s happening to my body. My brain needs to catchup with the physical manifestations of my disease progression.
  3. Talk with my husband about how I’m feeling and what these changes will mean for both of us. Talking out loud helps to make a surreal situation more real.
  4. Begin talking to family and close friends about the changes we are facing.
  5. Start taking practical steps towards changes required. Researching various options is a good starting point.
  6. Make lists. Writing down the details of required changes also helps make a situation more real. It’s gives a sense of ,”ok we are really doing this”
  7. Rest. When life throws us challenges that rock our world, we need replenishing. Rest is vital to keep as positive an outlook as possible. That doesn’t necessarily mean sleeping but just doing something that helps you relax. Something that centres you and reminds you that some old norms will still remain.

Feeling A Little Better

When life suddenly seems so surreal, it’s not going to just as suddenly become all ok.

Shock is involved and that takes a little recovery time. The grief process is revisited yet again.

Little by little you will begin to feel better. A small decision will be made that is a catalyst for a larger change. Before you know it you’ll be on a journey towards a new norm.

So as my sea of surrealism keeps washing over me, I’m going to remind myself I have a good track record of adjusting.

I’m going to remind myself that I have a solid simple step plan to follow to help me move through the deep waters to the shoreline.

I’m going to remind myself life will evolve into something beautiful again.

I’m going to remind myself that God has always provided me a safe passage through the storms of life, no matter the depth of the challenge.

With that thought, peace and hope returns.

Life will be ok. Different but ok.

I’ll be ok!

Sam xx

Will your anchor hold in the storms of life

Author: Priscilla J. Owens

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

2 Will your anchor hold in the straits of fear,
when the breakers roar and the reef is near?
While the surges rave, and the wild winds blow,
shall the angry waves then your bark o’erflow?

 

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

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

I also write @ Blogs by Christian Women

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

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

Please click here to read our Privacy Policy

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Finding Your Way Through A Chronic Illness Conundrum

~ Sam ~ 2 Comments

You know that feeling when you are completing a jigsaw puzzle only to find that a piece is missing?

It’s a devastating moment. Your stomach turns just a little. All that work, all that effort, all that anticipation of a final outcome. A completed picture was the awaiting reward but it’s been snatched away from you!

Trying To Fit The Pieces Of The Puzzle Together

Chronic and complex illness is so often like that. We are given a diagnosis, then another, then another and for some the list continues to grow with every medical appointment. Our medical team work with us to try to put the pieces of the jigsaw together.

Good progress is made. The puzzle pieces start to fit together. Treatment plans are made. Great anticipation builds in the hope that symptoms may reduce, even if a cure is out of reach.

A feeling of calm returns as you are in the driver’s seat navigating the road ahead. Nothing can stop you now.

Nothing except a missing piece of the puzzle.

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A chronic illness conundrum.

A change in symptoms,  a new symptom, a worsening of symptoms.

A knowing feeling that something is not right. A knot begins to form and tighten in your stomach.

Just like finishing that jigsaw puzzle only to find a missing piece.

The Gift That Keeps On Giving

Living with chronic disease is often referred to as the “gift that keeps on giving”. Labelling it a gift is a stretch at best but it definitely will keep you on your toes.

I recently had a worsening of symptoms and new symptoms. My conundrum was, do I “watch and wait”? Do I make an appointment to see my GP or one of my Specialists? Do I go to the ER?

It’s a chronic conundrum faced by so many in the chronic illness community. It’s the thing we most dread. We want to keep things moving on an even keel.

We don’t want to face conundrums, neither do we want to be a conundrum to our Dr or our family and friends.

We would love to focus on something other than our chronic health but when it’s all encompassing and ever giving, we can’t escape.

The reality is we will often be in this position so we need to find ways to cope.

I don’t have all the answers. I often don’t have any answers but I do like to problem solve and find a way forward.

Finding A Way Out Of The Conundrum

Finding a way through my new chronic conundrum will restore peace and instil a sense of hope. That’s my goal. Staying peaceful and organised is one of my major pain management tools. It’s critically important!

So, as I do, I made a plan and took action to deal with the latest puzzle my body threw at me. With my recent conundrum, I assessed that going to ER would be too much of an ordeal, I determined to let my Specialist team decide what’s best.

Here’s what my very simple but effective plan looked like:

  1. Stay calm – I did this by writing and planning. Works for me! (Find what works for you. You can’t plan effectively without calming yourself a little first.)
  2. Make an appointment with my GP to deal with some minor general health symptoms;
  3. Email my Orthopaedic Surgeon explaining my new worrying bone disease symptoms and worsening existing symptoms;
  4. Send a copy of the email to my Endocrinologist;
  5. Don’t change anything to my current treatment plan until I’ve spoken to my medical team;
  6. Prioritise all necessary tasks, cancel all unnecessary tasks, appointments etc;
  7. Rest….Do something relaxing, knowing that while I haven’t solved the conundrum, I’m back on track and heading in the right direction.

Within a day my plan began to produce a positive outcome. An urgent MRI was ordered. It was assessed quickly and I was advised I do indeed have a worsening of my bone disease. My spine issues required a Spinal Surgeon/Specialist to be added to my medical team. A referral and appointment time were quickly arranged.

A Light At The End Of The Tunnel

While my planning didn’t provide an immediate solution to my new conundrum, it produced an outcome and a new action plan evolved.

There was progress and that felt so good.

Having an effective plan doesn’t mean the outcome will be good news, but it does mean I’m going to find out what’s going on with my crazy body.

It does mean I feel less alone in battling through a whole new level of excruciating pain. I have new people, the right people, on my team now working with me to find that elusive piece of my current puzzle.

I can see a little light at the end of the tunnel.

Maybe, just maybe, the missing piece of this jigsaw will be found.

Until the next chronic illness conundrum, when I will start this process all over again.

Take care

Sam xx

“But as for you, be strong and do not give up, for your work will be rewarded.” 2 Chronicles 15 v 7 (NIV)

 

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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The “Chronic Illness” Law of Diminishing Returns

~ Sam ~ 22 Comments

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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

Please click here to read our Privacy Policy

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Clinging To Hope….Maybe Tomorrow Will Be Better

~ Sam ~ 10 Comments

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

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

Please click here to read our Privacy Policy

WEGO Health Award 2018 Nominee

 

It’s Never As Easy As……

~ Sam ~ 9 Comments

How many times have you said, “No worries, that’s as easy as…….”

I know I’ve said it countless times during my life. In fact that’s how I used to live my life. Everything was seemingly easy and if it wasn’t I could quickly convince myself it was.

I had a positive can do, absolutely, yes to everything, kind of attitude to life.

I still have that attitude but my chronically ill, crumbling and disabled body, really does struggle to get with the agenda.

A Gradual Awakening

I feel blessed my change in life circumstances have gradually evolved. Many are faced with a drastic and life altering diagnosis in the blink of an eye. A serious accident or a terminal illness can so quickly turn life on its head.

My gradual awakening, while a blessing, has not been without its challenges. I suffer from fatigue due to my bone disease pain and autoimmune diseases but in general my brain manages to stay alert and functioning. At least I’m telling myself that at this stage!

The downfall of an active and alert brain, is the message “it’s not as easy as….”, fails to get through.

My brain still has a lifelong program installed, playing the opposite message, “you can do that,  it’s as easy as……”.

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Point In Case

Now I’m not completely stupid. I do know that my disabilities limit me severely. My regular readers will know I have made mountainous changes to the way I live my life.

Where I still trip up, is thinking that something as simple as packing a day bag for day surgery, will take me half an hour.

Ha…..how wrong could I be?

So here’s how that little exercise went;

  1. Got hospital day/overnight bag out of cupboard.
  2. Another bag fell on my foot…..oops a new stress fracture!
  3. Finally opened the bag (after trying to stand on my legs) to find that it was full of things I didn’t need.
  4. Emptied bag and gave surplus to requirement items to my husband. He had come to my rescue following the foot crisis.
  5. Realised that some of the things I thought were in the bag were not.
  6. Climbed on my stairlift for an unwanted trip upstairs.
  7. Gathered required items and headed back downstairs on the stairlift.
  8. Packed my pills ( you really don’t want to know or ask about that saga!)
  9. Realised I needed a few items from the shop and some prescriptions required refilling.
  10. Husband headed out to chemist, leaving me with firm instructions to sit and rest.
  11. I actually listened to his advice as I was in agony and I waited!
  12. Husband came home and I finished packing the remaining “normal” items.
  13. I say normal as next I needed to work out what I wanted to take in terms of my stoma supplies.
  14. I decided to pack each stoma change in a zip lock bag. This system works incredibly well when I’m trying to deal with bag changes and broken legs/feet. It does take time to pull together but worth the extra effort.
  15. Husband decided to tell me I perhaps should pack a little more in case they keep me in overnight. Thanks for that thought! Unfortunately with my medical history, experience tells us its a possibility.
  16. Extra packing gets underway.
  17. The whole process was spread over 4 hours!!
  18. Later that night, we were lying in bed just about to go to sleep, when I remembered I forgot to pack a spare set of underwear!
  19. Hubby got out of bed to put the items on top of the dresser so I’d see them in the morning. At this point we decided we’d completely had enough of this day/overnight bag shenanigans.
  20. Thankfully I still had 2 days to recover before my surgery!!

The Moral Of The Story

There is a moral to this story. It can probably be best summed up as;

With Chronic Illness it is never “as easy as!”

So many clichés spring to mind but I promise I will spare you those.

Basically we need to allow plenty of time to prepare for any lengthy event. Be that a holiday, surgery, a day visit to family or friends.

We can’t just think all will be ok on the day. We can’t just assume a task will take us 30 minutes like it did when we were healthy.

If we do we will set ourselves up for failure. Stress, anxiety, extra pain and fatigue and possibly not even making the event, are likely outcomes of not getting sorted days in advance.

My rule of thumb is, where possible, always allow 2 days minimum to recover from packing/preparing for an event.

We can’t guarantee how we will be on the day of the event, as Chronic Illness doesn’t like to play fair.

By being well prepared we can at least guarantee we will feel better, knowing whatever the outcome, we didn’t deliberately sabotage ourselves by leaving things to the last minute.

“It’s never as easy as, but it’s not impossible with a lot of preparation”

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 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

 

 

It’ OK To Take An Online Break

~ Sam ~ 33 Comments

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

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

Fast forward to today and I am now fully entrenched in a whole new world of blogging network groups and online support groups, either as an active member or as an administrator/owner.

Not to forget Twitter accounts , Pinterest, Instagram and Facebook pages linked to my blog, my personal Facebook account, writing for The Mighty and other publications.

It’s A Full Time Job!

All of a sudden my sedentary, chronically diseased life, looks more like it did when I was working full time in an Executive Management role.

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

It’s Ok To Switch Off

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”.

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 and just give them your all. In fact it’s probably better to do that.

Switch off your phone, tablet, laptop. Listen to the quietness when you do that. Take a deep breath and just enjoy that moment when you let your mind rest from the social media world.

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

Give Yourself Permission

I’m going to make some changes. I love my forum and that’s my number one priority. I do though need a day off once a week and 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 filling my mind it’s hard to listen to any inspirational ideas that might be lurking in the recesses of my brain. Thinking  time is essential for clarity to emerge and writers block to be broken.

So I shall still happily emmerse myself in the chatter of the chronic illness networks and blogging 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 and enjoy some clarity of thoughts.

If you are feeling like your blogging or online work is overwhelming you, I’d encourage you to switch off for a moment. Think about how you can better manage your time and involvement in social media activities and  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?

“By the seventh day God had finished the work he had been doing; so on the seventh day he rested from all his work.”

Genesis 2 v 2 NIV

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 and make changes to how I manage my writing commitments, my blog and forum.

I still haven’t quite got my online/real life balanced yet but I’m on the right track and that’s got to be a good start.

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.

This post was shared at the Salt and Light Linkup Group

 

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

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

Please click here to read our Privacy Policy

awards_Community_(2)

WEGO Health Award 2018 Nominee