Plans? What Plans?

As a New Year gets under way it’s usual to think about the year ahead and set goals both for your personal and business life and perhaps plan holidays or other adventures. I did that for years.

It’s summer in Australia and generally known as a holiday month. Schools are closed and many businesses are either closed or have reduced hours during January. Many of my Specialists are also on holiday, so that allows me a little time out from tests and appointments. I’m so grateful for a mini reprieve from the medical scene.

I’ve always loved the quietness of January, particularly when I was working, as it gave me time to slow down a little and think about the future and the year ahead.

Do You Have Plans?

I’ve been asked a few times over the past week “Do you have any plans for the year?” Since medically retiring that is probably the hardest question anyone could ask me.  Not that it upsets me or that I’m incapable of planning, it’s just that I haven’t been able to make concrete plans now for a number of years.

Well actually that’s not technically correct. I can make them, I just can’t guarantee I can achieve them and the likelihood is, I would have to bail out at the last moment if I did make them.

So as I pondered that question, “What are your plans for the year?”, I had to admit I don’t have any set plans for the New Year.

I have health hurdles and challenges that I intend to get through with as much grace and determination as I can muster. I have purpose in terms of writing and administrating my online support forum.

Outside of those activities, I am living one day at a time, often one step at a time…literally.


Focus On What You Can Do

There is something quite liberating about taking one day at a time. I don’t know what lies ahead, none of us do. So instead of looking ahead for the next goal to be achieved, or the next adventure to come along, I am hoping to enjoy each special moment in each day. It’s all I can do.

Would I like to have a holiday booked? Of course.

Would I like to be able to work? Absolutely.

Would I like to be able to book a restaurant for a special occasion? Definitely.

I’d like to do many things. To say otherwise wouldn’t be true but focusing on what I can’t do isn’t going to help me live well with chronic disease.

Focusing on what I can do, no matter the limitations, helps me remain positive and outward looking.

Some of my moments are so full of pain that I long for those to pass. The moments when I can do a little bit more than the moment before it, I “plan” to enjoy as much as possible.

Living The Dream

I might not be able to set great goals or have planned adventures ahead but I’m still glad it’s a new year. It will be full of surprises whether I plan them or not. It will be full of joys and disappointments too. The best I can do, the best anyone can do, is to embrace each and every experience. If I do that I am embracing life and all that it has to offer.

I might not be able to make concrete plans, thanks to my rare disease, but after living a crazy life, before chronic illness, of copious plans, agendas, schedules, conferences, appointments and constant phone calls… know what? I can breathe, I can relax and just allow the adventure called “life” to unfold as the year rolls along.

So “What are my plans?”. I plan to live as well as possible, within my limitations and enjoy what I can, when I can.

I remember dreaming of having a relaxed, no agenda life when I was working and so exhausted. So I guess you could say I’m living the dream!!


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


Please click here to read our Privacy Policy

Faith, Hope and Love – Merry Christmas


Oh how I love this time of the year! Carols playing, tree decorating, wrapping presents with beautiful paper & ribbons, christmas cake & pudding and yummy mince pies.

As I think about this season and the memories it conjures up in my mind, I can’t help but contrast my current Christmas to my Christmases past. They were full of a busy church calendar of services, singing in choirs or singing solos at church which all meant nights of rehearsals. Meeting up with family & friends, end of year functions and fitting all of this in while working full time. Despite the hustle and bustle of the season the true meaning of Christmas, faith, hope and love was always with me.

Now, I shop online, sing carols at home, enjoy all things festive with my husband but the hustle and bustle is gone. I am the same person as I was in those past Christmases but I have a very different body. Now I need to lie down at least 3 times a day to allow my legs time to rest and heal. Going out into the hustle and bustle is not a great idea on crutches with an unreliable bone disease,  so any outings are carefully planned & quiet locations sought.

What remains the same is my love of Christmas. Faith, hope and love endures.

Faith in the story of Christmas. That the baby born in Bethlehem was the Son of God. He was born that we might live. He was born to die to save us from our sins and to rise again to go to prepare a place for those who believe in him. Those who are prepared to call him Lord and Saviour.

Hope that because of the Christmas story I have a future that will one day be without pain.

Love, the greatest love story ever told. It truly is the most wonderful time of the year and no matter the restrictions of my body, my heart sings and my soul jumps for joy!

Happy Christmas to all my readers. May you find the Faith, Hope and Love of the true Christmas story xx

Holiday… it worth it?

We have decided to have a couple of nights away on North Stradbroke Island. For those of you not in Queensland Australia, this island is a Bay Island that we can get to on a 45 minute ferry ride. The ferry departs 4 minutes drive from where we live so is just so convenient & easy.


Easy? Did I just say easy?

Easy for an able bodied healthy person but I have had a complete wakeup call this week at just how difficult even a simple ferry trip & accommodation booking can be with a disability.

Let’s start with the ferry. We are taking our vehicle over which definitely will make it easier for us when we arrive. However the vehicle ferry is 3 storeys high & steep stairs from where the car is parked awaits passengers leading them to the licensed café. I found this out as having booked the trip on Wednesday, I woke up Thursday morning in a cold sweat realising I hadn’t asked about disability access for someone on 2 crutches. As soon as the office opened I rang the ferry office armed with a list of questions.

Is the ferry disabled friendly? No was the answer. Not the one we were booked on but I was told the other ferry has a lift. PHEW!! I quickly re booked on the other ferry.

Does the ferry have disabled toilets? No, none of them do. I felt like completely cancelling after hearing that. Having a broken leg & a stoma requires a disabled toilet. We really need a relaxing day out away from medical appointments and we have wanted to visit the Island for so long, so to make this happen I had to think over so many scenarios in my mind as quickly as possible. At this point we were only going for the day. We felt a day trip would be a good test for me post surgery but it was beginning to feel like complete torture.

I got off the phone & found Peter. Poor guy, he knew by the look on my face that I was really worried. I have no control over my stoma and while I manage it really well it is disconcerting when locked into a situation where there are little options in terms of dealing with an unexpected issue (they do happen).  If I didn’t have the crutches I could manage better in this sort of situation but the 2 issues together make military precision planning necessary when venturing out.

So we discussed all possible worst case scenarios. My main issue was if I had an emergency with my stoma on the ferry it could ruin our whole day on the island as I didn’t know where the nearest disabled toilet was when I got off. Even the local council couldn’t advise me of that when I phoned for information, except to say all public toilet blocks should have a disabled toilet. Hmm…not very helpful. Also when you really need to sort out a misbehaving stoma, public disabled toilets aren’t always the cleanest or even the most practical, believe it or not.

So after focusing on what wasn’t going to work & very nearly giving up on the whole idea, my optimistic nature kicked in and I began thinking about what could work.

The outcome was that we decided if we had a base when we arrived to drive straight to, most of our concerns would be dealt with. That led to the decision to stay overnight. Of course once we started looking at accommodation every place bar one had stairs, or were just unsuitable in terms of layout. Also all accommodation on the island requires a two night minimum stay. Now that bit we are not complaining about & the more we thought about it I probably would need to crash from all the effort anyway😊

Finally I found somewhere that seemed suitable and I rang the reception to be greeted by the most understanding lady. What a relief! As a result we have taken the plunge and booked for 2 nights in a lovely beachfront apartment with beautiful views where our car can be parked right outside, all one level and flat.

To say I am completely relaxed about going wouldn’t be quite true. Firsts are always daunting  & I am still battling a lot of pain with my leg which is exhausting. That alone makes everything feel that little bit harder and that’s without factoring my Rheumatoid Arthritis into the equation,  let alone my stomas little parties.

I know so many people look forward to holidays and even live for them. My experiences with my health over the past 5 years have made me realise that for many people living with disabilities, planning holidays can be extremely difficult and can take away much of that excitement and anticipation normally felt when planning time away.

Will this little trip feel like a holiday? I’m not sure but it will definitely feel like a major achievement and that’s a good thing!

Now to organise packing…ugh….just another complexity to deal with!