Waiting isn’t easy, no matter what we are waiting for.
2020 and 2021 taught us this as we lived through the COVID pandemic.
As the world grappled with a global health crisis, we all had no choice but to lock down and wait.
We were waiting for it to be over.
Waiting for a vaccine 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 had become separated from us due to travel restrictions and border closures.
It’s was such a difficult time for everyone. The freedom to do as we liked, when we liked, had been snatched from us. For many people adjusting to this new norm, of being in a permanent state of waiting, made life almost unbearable.
It’s a good thing to pause and take a moment to think about the changes COVID-19 forced on all our lives and, in many regards, still does now. Life has changed on many levels forever. There are some positive society changes, but not all change was good.
The losses were real, and the ongoing impact and changes forced on societyis important to remember and acknowledge if we are to learn anything from the experience.
Let’s then step back for a moment to think about those who lived with chronic illness in the midst of the pandemic.
How did it affect 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, every single day.
Forced waiting can ignite 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 at the moment as I’m sure yours is.
It includes:
- Waiting for MRI results;
- Waiting for Bone Scan results;
- Waiting for my PET Scan and Breast Ultrasound appointment as we investigate the very real possiblity of non hodgkins Lymphoma – Waldenström’s macroglobulinemia
- Waiting to see a range of new Specialists to determine next steps in managing my debilitating and disabling disease symptoms;
- Waiting every day to hear and feel the snap of a new bone fracture occurring;
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.”
Sam Moss
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
Standing With You lyrics © Universal Music Publishing Group, Warner Chappell Music, Inc
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”
Source: LyricFindSongwriters: Greg Holden / Guy Sebastian / Jamie Hartman
Loving Ourselves On Valentine’s Day
Love it or loathe it Valentine’s Day is upon us this week.
Whether you are in a relationship or not, one of the best ways to celebrate Valentine’s Day is to take time to care for yourself….to love yourself.
Wait lists and living with chronic illness 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 a couple of years ago, which turned out not to be such a good one. My wait list was growing, and my list of concerns was 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 it wasn’t the time back then, and it’s definitely not the time now. It is so time-consuming and much more exhausting than blogging or even writing my book ever was. 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 write and administer my online support forum and the Arthritis Queensland forum I moderate. So, for me, 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 nothing wrong with a little self care Valentine’s chocolate to be enjoyed, with a perfect cup of tea!!
Take care
Sam xx
Medical Musings with Friends
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.
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