A Paced “Chronic Illness Life”, Sometimes Requires Extra Pacing

I’m a huge fan of pacing. It’s number one on my list of key chronic illness/ pain management strategies.

Pacing doesn’t remove symptoms or take all my pain away. It does help to reduce some discomfort and reduces the risk of me causing an escalation of more crippling issues.

Well, usually it does that!!

My Normal Daily Pacing Routine

Being permanently disabled and medically retired, I have a very set and very strict daily pacing routine. If I try to change it, even slightly, there is always consequences.

So without boring you with every detail the high level overview of my plan looks like this:

  1. Wake up and take pills;
  2. Have breakfast in bed (thanks hubby) and check my forum, emails etc;
  3. Go downstairs and do some chores (eg: light dusting, load dishwasher) 1 hour max;
  4. Make hubby and I morning coffee…..sit and chat for 30 mins;
  5. Clean up coffee cups etc;
  6. Go back upstairs and lie down for an hour;
  7. Get up, make bed and get dressed for the day (this is around 12pm);
  8. Go downstairs and unload dishwasher;
  9. Make cup of tea and sit in my lounge chair;
  10. Hubby makes us lunch and we’ll watch a favourite recorded TV show for an hour;
  11. Clean up after lunch;
  12. Go upstairs to my office and pay bills, check emails and forum etc (30 mins max as the pain is too much in this position);
  13. Go back downstairs for a cuppa with hubby. We’ll often sit in the courtyard;
  14. Go upstairs to lie down for an hour. I use this time to write;
  15. Come downstairs and sit in my armchair while hubby cooks dinner. I continue to write or work on my forum, scheduling segments or chatting with members or my admin team online;
  16. After dinner I shower and am in bed by 8pm. Hubby comes upstairs and we spend the evening watching TV or a DVD, chatting together and I’ve aways got one eye on my forum.
  17. Lights out around 11pm.

It really couldn’t be more paced. I’ve had to completely overhaul my need to achieve a week’s worth of activities in a day. That was my old life. This is my new life.

If I have a medical appointment or we want to attempt a pleasurable outing, I have to rejig the whole day to have any hope of making it happen……that’s a whole other story!

Any Slower I’d Stop Completely

There we have it. Truer words have never been spoken.

There are some days when even my paced approach to living isn’t enough.

There are some days when I simply can’t push through the small active periods of my day.

I have to admit I really do hate those days. It’s like my body digs its heels in and says, ” Where do you think you’re going? I don’t think that’s going to happen today. I hope you have another plan!”

How can I possibly come up with another plan, when I pretty much live at a snail’s pace in four walls in an “upmarket hospital ward”…(aka my home)?

20180510_205147_0001

Pacing The Pacing

There is only one possible plan…pace even more.

Is that possible?

Well, yes apparently it is. I seem to be able to do it when I literally don’t have a choice.

It’s not fun but it’s essential. So, in stark contrast to my normal “active and adventurous” life, ( yes, sorry that was a hint of sarcasm), here is my “pacing the pacing” routine:

  1. Wake up and take pills.
  2. Have breakfast in bed (thanks hubby) and check my forum, emails etc;
  3. Attempt to go downstairs. It’s at this point reality kicks in;
  4. Get downstairs and collapse in my lounge chair;
  5. Try to get up to make morning coffee…fail miserably;
  6. Realise it’s just not going to happen today;
  7. Feel disappointed but very quickly decide it’s a full on writing and resting day. Could be worse;
  8. I’ll throw comfy day clothes on ( throw is obviously a massive exaggeration!);
  9. I’ll rotate between resting downstairs and upstairs but I’ll need to spend most of the day on the bed;
  10. I’ll shower around 4pm, get into bed properly and spend the rest of my day/night there (including all meals).

Take a Sick Day

Despite being a little “tongue in cheek” my important message is that there are days, when living with chronic illness, you have to accept you need a full on “sick day”.

If you were healthy and working you would take the occasional sick leave day. You’d have no choice.

This is no different. There will be days when we can’t function at our “normal” chronic illness pace. Days when we need to take a “sick day” from our chores or other commitments.

I’ve even had days when I’ve had to call in sick to my Doctor. Sounds bizarre doesn’t it but it’s true. That conversation goes something like;

“I’m too sick to see Dr xx today, sorry I’ll have to try another day!!

Don’t feel like a failure if you have to pace your pacing. It’s just a blimp, a glitch. You may get away with only taking one sick day or it might be a case of needing a week of them.

The important point is, the sooner you start “pacing the pacing”, when your body gives you the knowing signal that all is not well, the sooner you will get back to your normal level of paced activities.

I’m trying to convince myself of this, as much as I am anyone else. I know it’s not easy but it’s essential if we want to navigate this chronic illness life in the best state possible.

Take care

Sam xx

Bible Verse

Come to me, all you who are weary and burdened, and I will give you rest.”

Matthew 11 v 28 (NIV)

 

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

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

I also write @ Blogs by Christian Women

 

 

 

Embracing Chronic Illness In a “Deliberate” Way

One of the hardest things about living with a chronic illness, is learning that life has to be paced.

No more jumping out of bed and embracing the day with the energy of a netball team.

I know that sounds like an extreme analogy but that is how I used to live. I had that kind of energy.  I have always loved life. I would wake up every day with the anticiption that the day ahead would bring new and exciting opportunities.

To do what you might ask?

Well, just to live and contribute to society, be that business, community, home life, church life…whatever!

And Then Came Chronic Illness

I know I am not alone in experiencing a life changing health event. There are many, many people suffering from long term chronic illnesses, be that physical or mental disabilities. One minute active, the next wondering what to do with a failing body.

I can make lists as long as my arm but there is no way I can physically achieve them. I can dream of far away adventures or just popping out on a whim to visit friends or family but the reality is I can’t do that either.

Is that so bad? No, not really.

Embracing Every Day Like It’s Sunday

I have always loved Sundays. In our home it’s usually a quiet and reflective day.  I say usually as I’m married to an Anglican Clergyman and Sundays were  far from quiet in the past. It was actually the busiest day of our week!! They have always been reflective though.

Thankfully he is retired now, as my carer, so we can definitely reclaim Sundays as a quiet day.

Some days still feel like a Monday, or a Thursday if I have medical appointments to get to and they are extremely difficult days for me physically.  Other than those odd busy days, I can pace myself.

That’s why I’m medically retired, to care for myself and manage my disease and find a new quality of life.

The biggest battle with embracing everyday like it’s Sunday, is with me.

I know that physically my bone disease limits me in every area of life due to pain and disability. My broken bones serve as a constant reminder.

You would think I would be intelligent enough to give myself permission to treat every day like Sunday, or at the very least like Saturday!!

Mostly I do but there are still moments and days when I want to run, I want to plan and I want to contribute to life on a larger scale like I used to. Underneath the physical disabilities I am still me.

I am still that same person that jumped out of bed every morning with way too much energy.

I can’t change my health situation but I can always change my mindset and I have deliberately choosen to embrace my new life.

20180428_211551_0001

Deliberately Embracing Chronic Illness

Now there’s a concept that may raise an eyebrow or two. That word “deliberately” is key. I think there is a sense of determination and grit needed to fully accept chronic disease.

You almost have to “commit to it” when you know it’s permanent. Commit to it in a way you would your career or marriage or any goal or life pursuit.

If you have sought all the medical treatment possible, followed your medical teams advice to the letter of the law and been told your disease is chronic, permanent and progressive…..well it’s probably time to just go with the flow and accept it for what it is.

I have learned to live very differently over the past 4 or 5 years.

Acceptance has been a gradual process but a necessary one to discover a new quality of life.

Finding A New Quality Of Life

You know “quality of life” means different things to different people. We all have to work out what’s truly important to us to find a meaningful way to live.

For me, being passionate about serving others has been my driving force. My work focused on serving, both in the business world and in my roles in church life. When I was working and serving others I was always happy and content.

I was always content in my home. I’m a homebody. I was happy with quiet weekends, takeaways in front of the TV, or fish and chips by the beach.

I loved road trips but never had a burning desire to “travel the world”. I travelled to the UK when I was 18 and again at 20 and that satisfied my international travel bug.

I’ve travelled extensively throughout Australia and my husband and I have lived in many different places across our beautiful country. I’m content with the wonderful experiences and memories I have from my “healthy” days.

So my new quality of life isn’t that much different to my old life….I just do it all from home now. My fingers do the walking online as I serve and share with others on my online forum and through my writing. Our car can still take me on short drives to look at beautiful scenery.

I can still potter with home decorating and I’m so grateful that, for now, I can still live in my own home.

I’m not going to waste what precious energy I have being angry at my disease or my body. Things happen in life to all of us in varying ways.

Things we didn’t see coming. Things we wouldn’t have chosen. Things we can’t change.

I’m “deliberately” accepting my circumstances so I can get on with living the best version of life on offer to me.

I’m “deliberately” giving myself permission to “Stop and Smell the Roses” every single day as if it’s Sunday.

Who knows with enough Sundays all strung together, I might actually be able to enjoy the odd Tuesday and Wednesday….Monday’s may still be a bit much !!

Take care

Sam xx

 

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

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

I also write @ Blogs by Christian Women

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

 

 

A “Good News” post ~ Happy Easter!!

Happy Easter

There is always a lot I can write about in regards to my health but today I just want to say “Happy Easter”.

This is such a wonderful time of the year, full of the hope of new life, as we remember what Jesus did for us on the cross, dying that we might be saved and rising on the third day to show us that there is life everlasting.

20180319_130347_0001

For someone with a body that is failing at every opportunity, the joy of knowing that one day I too will have a new life and a new body is so exciting.

In the meantime I am still finding new ways to enjoy the life I have now and to never for one moment take it for granted.

However you choose to spend this Easter weekend, I hope it is full of love, peace and joy….oh and of course some chocolate eggs!

I pray that for those of you who are unwell and unable to celebrate Easter as you would like, that you would find the strength to enjoy simple things and use this time to rest and renew as best you can.

Take care

Sam x

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

God Cares, Even About The Little Things

We often think of God’s plans for our life in terms of grandiose ideas. God also cares about the little things in our life just as much as the big-ticket items.

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

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

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

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

Thankfully God does know our future and my experience is that He always has a plan available for us at just the right moment. We need to be watching, waiting and listening for it and prepared to act on it.

Do Not Worry

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

Matthew 6 v 25 -34 (New International Version)

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

20180308_080033_0001

Appreciating The Little Things

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

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

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

Adjusting to Losing Some of Life’s Little Things

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

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

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

Finding Ways to Adapt

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

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

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

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

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

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

We holiday at home. When I first medically retired, we felt God leading us to a lovely Bayside village. We thought it was because it would be good for our health to go on long walks and have fresh air. As it turns out it means my husband can drive me 4 minutes, down the road from our home, to look out over the Bay to the Islands beyond. Magnificent views, fresh air and it’s so uplifting. The added bonus is there is a cafe with disability access. On good days we can sit there for 20 mins enjoying a coffee and cake. That’s what we’d do on holidays anyway. This way I get to come home to my own bed and avoid all the packing required for a holiday. Perfect!

God Cares Even About The Little Things

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

Luke 12 v 7 (King James Version)

So that brings me to my hairdressing needs and I must admit I’m a bit excited.

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

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

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

She has since had a beautiful baby boy and let me know this week that she won’t be doing mobile hairdressing again. Completely understandable.

So, I am left with hair that hasn’t been cut for 6 months and while it’s healthy enough, it’s at that awkward stage where I can’t manage it. Not ideal when I already have disabilities that make grooming a challenge.

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

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

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

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

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

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

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

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

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

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

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

God cares, even about the little things.

Sam xx

This article was written for  Blogs by Christian Women. It is an honour to be a regular contributor.

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

 

Patiently Waiting For Purpose

(An edited post from June 2017)

20180307_144922_0001

How do you continue to live life to the full when your health limits everything you do?

How do you cope with waiting for a reprieve in symptoms when the reality is, no reprieve is coming?

I’m not going to say there are easy answers to these questions because there definitely are not. It’s hard. It can be overwhelming to wake up day after day only to discover that your leg is still broken, your fatigue is just as bad, if not worse than it was when you fell asleep the night before and a pile of medication is sitting on your bedside table staring at you, alongside a glass of water.

I have however found that two things really help me live a fulfilled life despite uncertainty, pain and disappointment.

Patience and Purpose.

I have discovered a whole new level of patience over the past 7 years and patience is one of the keys to me living well with chronic illness.

Patience with my body.  Patience with my Drs. Patience with people who struggle to understand what it’s like living with a chronic disease.

Patience is not something that comes easy to me. I was always referred to as “instant Sam” by family & close friends. I like things to happen quickly. If I have a goal I have always put 100% of my energy into achieving that goal as fast and as well as I possibly could.

So how did I become so patient? I learned quickly, once my health deteriorated, that if I wanted to be involved in an activity I loved, slow and steady was the only way of doing it. If I rushed I would literally, physically fall in a heap. A lack of patience in the early days quickly taught me that wasn’t a smart way to live a new life.

I also learned that patience brings a wonderful sense of peace. As expectations are re-aligned, pressure is reduced. Giving yourself permission to live at the pace your body allows is amazingly freeing.

However only you can give yourself that permission. It’s nice to have others support but ultimately unless you allow yourself to adjust your life it just won’t happen. I also believe that if you don’t adjust your life, others in your life won’t get the true picture of how much your health is affecting you & you are at risk of falling into a vicious circle of not feeling supported.

I think it’s really important to work out your limits and let others in your support circle know exactly what those limits are, so that they have a clear picture of what they need to do to support you live the best life possible with your chronic disease. Remember though to be patient while they adjust to the changes you are making. It’s all a process and it all takes time to achieve. Keep in mind your change in health is a change for everyone around you.

20180307_145715_0001

Discovering My Purpose

Once you have realigned expectations and discovered you can be patient with your new body, purpose is then so important.We all need purpose in our life, no matter how large or small.  For some that might be achieving goals like reading an entire book series you’ve always wanted to read or, if you are mobile & can get out of the house for a while, joining a craft group or a choir.

Due to my disease and disabilities I am pretty much housebound so I have needed to find purpose at home. Starting my blog two years ago was the beginning.

I didn’t just start it without thinking it through. I first completed  an online blogging course through the Australian Writers Centre. It was my initial step to what was going to open a whole new world to me. A world I really had no idea existed and I had no idea how far it would develop.

I was nervous about opening myself up to others. I write about deeply personal things but I felt I needed to tell my story and I hoped it would eventually reach others who were experiencing a similar journey. I wasn’t interested in how many blog followers I had. I would have been happy to reach one person. I really wanted to just write because I love writing. I had previously (in my 20’s) studied freelance journalism & non fiction writing so it was a long time love which I suddenly had time to explore.

I also had a deep desire to serve others. I knew I couldn’t volunteer outside of the home but I had been involved with a charitable organisation who had a very small web based support group. I decided to offer my time to help expand the group and transferred it onto Facebook for them. That group has been going for 2 years now and is an enormous support to those who belong to it.

I sadly had to step down as admin after 12 months as my health deteriorated and I had a period of multiple surgeries and difficult recoveries. I didn’t completely lose my purpose though during that time. I readjusted my expectations again. I kept blogging about my health journey and I remained volunteering as an administrator for a smaller online group that was easily manageable.

At the start of 2017, it was clear my disability was not going to improve, in fact it was worsening. I found I had more time on my hands and I felt I needed more purpose. My blog was expanding slowly and I began writing some articles for The Mighty. I was satisfying my writing desire but I wasn’t fully satisfying my desire to serve. I could have returned to my previous online volunteer admin role but there were others able to serve there and I felt it would be good to try and find people with rare and complex diseases. I had no idea what to do with that thought but I had a crazy moment of thinking that there is no harm trying.

So I started Medical Musings With Friends and the rest as they say is history.

Thanks to living with patience and purpose, I am living an incredibly full life from my lounge room, my bedroom and my back deck. I connect with people from all over the world and provide a service where others can feel supported, where they can share their stories, their blogs, their articles. A place where they can make new friends and a place where they are not judged for what they can’t do but celebrated for what they can do, despite their diseases.

A Few Tips to Help You on Your Journey

If you are starting out on your chronic illness journey or perhaps have been struggling to adapt with the changes it has brought to your life, take a breath and be still for a while.

  • Be patient with yourself.
  • Take time to review how you are trying to live and how you need to be living.
  • Slowly start to make the necessary changes that allow you to live a life where you are patient with your new circumstances.
  • Share your thoughts and the changes you need to make with someone you love and trust.
  • As you remove things from your life that you can no longer do, replace them with things you can do.
  • Find your new purpose, explore it, dream about it and patiently put it in place.

Life with chronic illness and disabilities is not over, even if it may feel like it is at the moment. With time it is possible to begin living again and with patience and purpose being your new friends, a different and  fulfilling life can slowly emerge.

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

 

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

 

I Love My Phone! It’s A Chronic Illness Lifeline.

When I was working my husband always used to stir me about having my iPhone strapped to my ear almost 24/7. He wasn’t exaggerating either!

The other night while I was sitting up in bed frantically tapping away on my phone screen, I paused for a moment and looked up at my husband who was enjoying a show on TV.  I must add, we were both supposed to be watching it.

I was listening to it but I definitely wasn’t watching it in the relaxed manner I should be as a person “medically retired”. Life in my phone was just way too exciting and compelling to put it down.

I laughed and said, “Do you know what, I’ve just realised I have a whole world inside this phone that is buzzing with activity and I think it’s even busier in there than my life was when I was working”. Thankfully he laughed too!

20180619_175116_0001

It got me thinking though about whether that is a good thing or not. So, I started to do a pros and cons list in my head as I do when I am grappling with something.

Good news is, for me anyway, the pros list won! Under normal circumstances, with a healthy body, I would probably recommend to put the phone down, go out and do something wonderful and live a full active life, minus your phone.

Who am I kidding……I was never without my phone even when I was healthy and enjoying a full and physically active life. My excuse then was it was necessary in case of an important call, text, PM, Facebook message etc, etc 🙂

The Pro List

A physically active life is no longer possible now due to my chronic diseases and disability. The life within my phone opens a whole world for me that is exciting.

I can, in a virtual context, sail across the ocean and speak to others in different countries, or chat with friends close by or interstate. All from my bed when necessary.

I can connect with others battling serious and complex diseases through my forum and provide them comfort, while also finding comfort from their words of wisdom and kindness to me.

That kind of connection is priceless and so special. In online support forums for chronic illness, we probably share more with each other than we do with our closest friends and family. The connections are genuine, raw and real.

I feel blessed to be living with a disability in an era where this kind of connection is possible. Imagine the isolation others felt in times past, not really all that long ago,without the kind of communications we have at our fingertips today.

The pro list is definitely strong.

The Con List

The con list does exist though. There is one major con…EXHAUSTION!

I get way too tired as I get so involved in what I’m doing in my “Life in my phone”. I struggle to put it away and just stop and allow my brain and body to completely rest.

I always thought if I was resting my body it would be fine to keep my brain super active but I’ve actually found, if my brain gets too tired, my physical pain increases, so a balance is really important. I now realise “burn out” is a real danger.

Tips to get the balance right

I do have a few tips to hopefully try and get the balance right. Remember though that these are tips for those of us with Chronic Diseases who are disabled to a point where getting out and about is difficult. Many of us can no longer work and have given up exciting and rewarding careers because of our health.

Our new life of blogging, writing and managing online forums, is in essence our work. It’s like a new career choice and we are passionate about it and committed to it.

It’s a positive and essential life activity for those of  us living with chronic disease!

The balancing act is a work in progress for me, so if any of my Chronic Illness friends and colleagues have tips to add, please let me know.

Tip One: Schedule quiet rest times that are phone free during the day. Even 30mins is enough just to rest your brain and dial down physical pain levels;

Tip Two: Get your head out of the phone at least for every 15 mins in an hour. If able use this time to stretch your body, go into the garden, speak to your partner ( oops, probably should have put that first ), make a cuppa etc;

Tip Three: Don’t feel guilty about using your phone. It’s how those of us with chronic debilitating disease can best connect with others, in what would otherwise be a pretty lonely existence. Think of it as your work, your new career. It’s a positive tool in many circumstances in life but particularly under these circumstances;

Tip Four: When you are ready to turn the lights out at night or even 30mins before that time, turn your phone to silent. I have my phone beside my bed so that when I do wake up in the morning, I can start checking emails, messages,  Facebook forums, Twitter etc while I’m waiting for my pain meds to kick in. You don’t want a buzzing phone by your ear during the night. Remember many Chronic Illness sufferers can’t sleep well and will be quite active on their phones during the night, so if you are able to sleep and don’t want to be disturbed, definitely make sure your phone is on silent. Your partner will thank you too!

Above all, enjoy the wonderful connections that await us each and every day in the “land of our phones”.

Now it’s time for me to put the phone down and have a good 30min rest.

I’ll definitely be back soon though 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 and the  Grace Girls Facebook Group

Please click here to read our Privacy Policy

Loves and Losses

You would be forgiven for thinking this is a Valentine’s Day post given the title I’ve chosen. Please rest assured it’s not.

It’s really a continuation of my recent Acceptance article, where I was musing about acceptance not being a sad resignation to my chronic illness life.

For me acceptance is an acknowledgement my disabling rare disease “is what it is”.

I have formed strategies, over the past four years, to adjust to my change in circumstances and to live a contented life. I’ve discovered new loves along the way and I’ve shared many of these throughout my blog. You can read about them in My Story

In this post I want to talk about “Loves and Losses” in the context of acceptance.

I love my life, I am happy and I have a general positive disposition no matter what life throws at me.

That doesn’t mean I don’t miss things I have always loved but can no longer do.

It doesn’t mean there are not days when I feel the loss of my loves deeply.

images (8)

The 5 G’s of Change

I have a particular grief model I liked to use when I worked as a Management Consultant. It’s a little less clinical I think than some models. It’s called the “5 G’s of Change”:

Griping – this stage is when you feel like you just can’t do this. It’s all too much.

Groaning– this stage is the complaining stage.

Groping – this stage you begin to walk forward as if in a forest, moving the trees out of your way so you can begin to see a little clearer.

Grasping – You begin to understand what the new situation means.

Growing – You embrace the new, find ways to live again and acceptance brings peace.

When we lose a loved one we go through every stage of grief. Some stages we may get stuck in for a while. Some stages we may move through quicker than others.

Eventually we accept our loved one has passed. We begin to learn to live again.

A part of us will never be the same because of the loss of the one we loved, but as time goes by the memories don’t hurt as much. Those memories may even bring joy and comfort.

We will always miss our loved one.

It’s the same with any major life loss, including the loss of good health. It takes time to work through the stages of grief. We may get stuck in some stages but eventually we’ll grasp our new reality.

We will learn to live again. We’ll never be the same but we will, at some point, accept and embrace a new way of living. We’ll create new norms.

We’ll definitely miss aspects of our old life. Some things we once loved but can no longer do, become real losses.

My Loves and Losses

I loved to go on long walks with my husband along the beach, in parks or in the bush. I can’t walk now without crutches and for distances more than 200 merest I need a wheelchair/scooter. Most days I don’t have the physical strength, due to pain, to leave my home.

I loved to go to Church. I now can’t sit for the length of a service due to my broken legs and widespread bone pain. My stoma is so unpredictable I need access to disabled toilets, which unfortunately not all churches have.

I loved to go to work. My work wasn’t a job, it was a passion. Leading people was a joy. I was living my dream. I had my dream job. Weekends were nice but Monday to Friday were what I looked forward to. Sad maybe but true 😀

I loved to jump out of bed every morning bright and early. Mornings were always the best part of my day. I woke with enthusiasm and passion for what the day held. I still do to some degree….until I try to move my body and the realisation sets in that I am not the girl I used to be. Mornings now bring a whole new meaning to “a daily wakeup call”. I am faced with my new reality the moment I open my eyes.

I loved long road trips. My husband and I have a whole cupboard full of photo albums cataloguing our road trips across Australia. Such beautiful memories are also a stark reminder of what I have lost. Looking at them is definitely bitter sweet.

Being Independent. I’ve never been one to crave independence, even when I was healthy, but once you no longer have the ability to jump in a car and drive to the local shops or go to a hairdresser appointment etc on your own, independence is suddenly a loss. I am 100% reliant on my husband to be with me outside of the home and to help me with most things in the home.

I loved to go to restaurants. Those days are gone. I can manage 20 mins in a local cafe on a rare good day but any longer and my pain levels are unbearable.

I loved being spontaneous. My husband and I always enjoyed just deciding on a whim to head out on an adventure or go on holiday on short notice. We had freedom to accept job opportunities all over the country. We have moved locations and homes over 17 times in our 22 years of marriage. Those days are well and truly gone. The most spontaneous thing I do now is buy something online as a treat, which leads me to…

I loved going shopping. My favourite pastime,when I wasn’t at work, was strolling through our local Westfield Shopping Centre with my husband. We would window shop for hours hand in hand. We’d stop for a coffee and a snack and head off again, enjoying every minute.

20180314_165727_0001

My losses are my husband’s losses too. He misses all the things we did together. He has also had to travel his own journey towards acceptance.

Discovering New Loves

So a life of acceptance will be a life that encompasses loves and losses. New loves will be discovered. My old loves are still very much a part of me. They are part of my DNA so to forget them or be fearful of remembering them, won’t help me accept I am now living and writing a new chapter of my life.

I accept my losses and acknowledge I miss them. It’s ok to miss things we loved.

My response to accepting the changes in my life, is to constantly find ways to fill the void of my losses with new loves.

If you are having a day, or season, when you are feeling deeply the loss of the things you loved to do, take time out to think about how you can create a new love that will help fill that void.

You might just be surprised at how creative you can be with your ideas once you start brainstorming. Enlisting the help of close friends or online support group friends, may get you started with an ideas list.

Whatever grief stage you are at, in your life changing event, don’t be afraid to contemplate your loves and losses.

It’s a healthy response to change.

It’s all part of journeying towards the acceptance process!

Take care

Sam xx

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

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

I also write @ Blogs by Christian Women

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

Please click here to read our Privacy Policy