Standing By You While You Wait

Waiting isn’t easy, no matter what we are waiting for.

2020 taught us this and 2021 has continued with the same waiting theme.

As the world continues to grapple with a global health pandemic, we are all still waiting.

Waiting for it to be over.

Waiting for a vaccine against Coronavirus to become widely available and rolled out as quickly as possible.

Waiting for restrictions to be lifted.

Waiting to see family and friends again, who have become separated from us due to travel restrictions and border closures.

It’s a difficult time for everyone. The freedom to do as we like, when we like, has been snatched from us. For many people adjusting to this new norm, of being in a permanent state of waiting, life is now almost unbearable.

Let’s just pause and take a moment to think about the changes COVID-19 has forced on all our lives. The losses are real and the impact needs to be acknowledged across all sectors of our society.

Let’s then step back for a moment to think about those living with chronic illness in the midst of this pandemic.

How has it affected the disabled, the chronically ill, the newly diagnosed, the carer looking after a loved one?

The Never-ending Waiting List

Those in the disabled and chronic illness community often have a “waiting list” which seems never-ending, with or without a global pandemic.

Waiting requires us to dig deep to cope, now more than ever.

It ignites a range of emotions including, frustration, fear, worry, disappointment, anger, sadness and even excitement if waiting for good news.

To cope we need to enlist a range of attitudes including, patience, resilience, hope, faith, trust, determination and more. None of which are easy attitudes to perfect at the best of times.

I feel like my own waiting list is currently growing out of control on a daily basis. I need to find ways to cope while waiting.

It’s so easy to become consumed and overwhelmed by the wait list. Before we know it we can lose sight of areas of our lives not affected by waiting.

We can too easily cease doing the things we can still do and we become in danger of placing some areas of our lives in “unnecessary” lock down.

Breaking It All Down

My wait list is multifaceted as I’m sure yours is.

It includes:

  • Waiting to see if my new pain medication regime will work;
  • Waiting for MRI results;
  • Waiting to see a range of new Specialists to determine next steps in managing my debilitating and disabling disease symptoms;
  • Waiting everyday to hear and feel the snap of a new bone fracture occuring;
  • Waiting to see what Coronavirus will do next.

There are a few others I could add but you get the idea. It’s a complex list and it affects me physically and emotionally.

We may often feel mixed emotions for certain items on our wait lists. A feeling of fear and excitement. Fear of the unknown when waiting to see a new Dr and excitement at the prospect of new hope.

What we often need is just someone standing with us while we wait. Not to tell us what to think or feel, just someone to show genuine care and understanding of our needs.

There is a beautiful song by Guy Sebastian called “Standing With You”. The lyrics sum up perfectly what I mean.

“The more I tell you you can do this
The more you tell yourself you’re useless
Any advice right now is fruitless
You’re somewhere only you can go
I won’t pretend to know, so

Instead of telling you you’ll be alright
I’m just gon’ be that someone by your side
Yeah let me be that distant satellite
A constant in the sky’

Cause I’m standing with you tonight
Yeah I will be that voice in your ear
Quietly destroying your fear
You won’t even know that I’m here
But I’m standing with you tonight

Oh I will be the pill for your pain
Until the clouds have run out of rain
Close enough but just out of sight
I’m standing with you tonight”

Standing With You lyrics © Universal Music Publishing Group, Warner Chappell Music, Inc
Source: LyricFindSongwriters: Greg Holden / Guy Sebastian / Jamie Hartman

Loving Yourself

Wait lists can conjure a roller-coaster of emotions, reactions and attitudes. We need to hold on tight and find ways to equip ourselves for the ride.

Self care is so important and it’s a great place to start to equip ourselves for a bumpy and unknown ride.

Coping mechanisms for stress and anxiety often come in a handbook. However, they can feel so generalised and scripted. The writer of the self help booklet is not necessarily someone who has experienced your debilitating chronic illness, so you may find it hard to connect to the messages trying to be relayed.

I don’t profess to have all the answers. I can only share my own experiences and my tips for coping. Sometimes they work, sometimes they don’t, so I regularly need to review and tweak my approach.

At the moment I feel a little like I’m treading water, so I’m implementing a few strategies to place my wait list into perspective. I need to reconnect with things in my life not reliant on the wait being over. I need to take time to love myself and so do you.

It’s not selfish to do this. It’s necessary to our survival, our physical and emotional well-being.

I want to encourage you to take time to love yourself and celebrate your life. Forget about the wait list for a moment.

  • Get Enough Rest and Relaxation – When life becomes overwhelming one of the first things to be affected is rest and relaxation. It may be you feel guilty doing something nice for yourself when there are critical issues on your waitlist. WRONG! You are no good to anyone if you don’t look after yourself. Maintain your normal rest periods, watch a favourite TV show, read a good book. Whatever works for you to help you breathe a little easier, do it.

  • Keep Your Normal Routine– when chronically ill some things in our life must continue. Eat well, take your medication regularly, attend medical appointments, keep on top of chores you normally do around the home. The last thing you need is for life’s daily tasks to build up, to the point of them being added to your list of worries.

  • Keep Your Brain Active- an active mind helps us to focus more clearly on difficult situations like worrisome wait lists. I like to play brain training type games on my phone daily. It not only helps me relax, it helps me to clear the cobwebs. It rests my brain from my concerns. I tend to think of nothing other than working out the word puzzle or placement of the next jigsaw piece. It’s a happy place.

  • Push Yourself A Little– I know you’re probably wondering where I’m going with this one. Let me explain with an example. You all know I love to write. My blog is important to me. Reaching out to others through my writing is a passion. My wait list has been so consuming I’ve been feeling less than creative. Partly because I’ve been so exhausted emotionally, on top of living with my extreme physical pain. I know to be able to cope with my physical pain I must rest and I must keep life as calm as possible. Life was not helping me keep things calm, so I needed to take action.
    • I took a day off and simply rested with no agendas;
    • I was suffering from writer’s block so I jotted down a few ideas and put them to one side for a day;
    • The next day I cleared my agenda to completely focus on writing. I was determined to write something, anything. It didn’t matter what, I simply wanted to connect with the joy of writing. If it turned out half decent I’d publish it on my blog. If not I gave myself permission to say “It doesn’t matter”;
    • If you’re reading this, you’ll know my strategy worked!
    • To do the above I had to push myself a little. I had to give myself a good pep talk.

  • Don’t Start Something New – I had a great idea last year which turned out not to be such a good one. My Wait list was growing and my list of concerns were multiplying as a result. So I decided, in a moment of madness, it would be a perfect time to start Vlogging. What on earth was I thinking! Clearly I wasn’t thinking straight at all. I do love the idea of Vlogging and expanding my reach to people within the chronic illness community, but now is not the time. It is so time consuming and much more exhausting than Blogging. I managed two Vlogs and even set up my own You Tube channel, but it soon became evident it would be to the detriment of the time and energy I needed to blog and administer my online support forum. So for now Vlogging will be limited to a video on my forum, only every now and again, when and if I’m able. Lesson learned!!

  • Reach Out – Going back to the lyrics of Guy Sebastian’s song, and our “loving yourself” theme, reach out to someone who will simply be by your side, not someone who will tell you everything will be alright.

It Won’t Always Be Alright

I would love to tell you everything will be alright but we all know, through life experiences, it’s not always the case. You have a chronic illness which is testimony to the fact not all aspects of our life will have a fairytale happy ending.

It doesn’t mean life can’t be happy, joyful and fulfilled. It will just also be sad, worrisome and we’ll have anxious times.

We’ll have days which might be incredibly tough.

How we cope and manage in the midst of times when life isn’t alright, is what matters when it comes to maintaining some semblance of well being.

Let me leave you with this video of Guys song. I hope it’s a reminder there are others, who may not fully know what you’re going through but, who are willing to stand with you.

If you are feeling alone and in need of someone to stand with you, My FB forum Medical Musings with Friends is full of people waiting to listen, care and just stand by your side, no matter what you’re going through.

We’d love to welcome you and care for you.

And remember….When all else fails, there’s always chocolate!!

Take care

Sam xx

If you would like an audible version of my blog, please check out my Podcast, Medical Musings With Sam

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  the  Grace Girls Facebook Group and the Salt and Light Linkup Group

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Australian Aspire Awards 2020 Nominee – Awarded Medal of Recognition for Individual Best Achievement Community Advocacy.
Thank you to Arthritis Queensland for the nomination!

Healthcare Collaborator Nominee 2020
Best in Show: Community Nominee 2020
Best in Show: Blog Nominee 2020