Just Treading Water

As a patient advocate, I am often called, inspiring, motivating, and full of strength despite my adversities.

While I want to be all those things in order to reach others and help them through their own inspiring, motivating, and incredible chronic illness journeys, the truth is most days I am just treading water.

I feel every inch of my daily pain. I look in the mirror, and my heart sinks at the reflection of the woman I used to be, let alone the woman I’d like to be now.

Funnily enough, the multiple surgery scars don’t bother me but the constant swelling and inflammation all throughout my body from broken bones, bowel issues, medication reactions, abdominal adhesions and multiple surgeries, (20 at last count), is severely painful to uncomfortable. It also causes my shape to change frequently throughout the day.

Every now and again, the fluid and inflammation all drop away, and a remnant of my former self peeps out to say hi. These moments give me a little hope.

The Raw Truth

A beautiful family member posted on Facebook recently a raw, honest, and incredibly motivating message about, in essence, being authentic. Not keeping up with what others do or are, or even what’s expected of us. Not being pressured to aspire to what others may interpret is what our lives should look like.

Her words were insightful, vulnerable, and full of strength beyond what she perhaps knew she had. Much stronger than those trying to portray an unrealistic social media life full of edited photos and nothing but the good times in life.

Don’t get me wrong, I think it is right to share the good times, to talk about the joy admist the pain, to give hope when things seem hopeless. I will always do that because that’s me being authentic. I’ve always been an optimist long before social media existed.

There is, however, a place and time, especially as patient advocates, when we need to let others know we are feeling under the weather or less than motivated. We certainly don’t feel inspiring and full of strength.

We are just treading water!

Keeping Afloat

When we are treading water, we are not drowning. I think that’s an important point. Quite likely to the outside world, we look like we are managing very well.

When treading water your head is still above the ocean, and while a few waves may threaten to crash over, you are generally afloat. Others would have little idea of the struggle going on underneath the calm blue sea.

Your legs, however, are working incredibly hard to keep you afloat. The more you kick the more fatigued you become. To continue in this state will eventually lead to drowning if you don’t make changes to your circumstances.

You have to find a way to keep afloat.

So how can you do that with chronic illness when others are depending on you and when your health circumstances are unlikely to change?

I think getting back to basics is the starting point. It certainly is for me. Here’s what I mean by that:

• Be Honest With Yourself – it’s so important to acknowledge you’re just treading water. Do this privately or with a loved one or close friend. Talk about how you feel, or if you are on your own, journal your feelings with complete and unashamed honesty. This process is like a reset, and you’ll feel some of the stress just float away. Your legs won’t need to kick quite so hard while still treading water.
• Consider What Changes You Want and Can Make To Allow Life To Become Easier – you may decide you need professional help, or you may realise you just need a break from working, volunteering, advocating for a while. You might need to set realistic goals that are right for you at this stage in your life and take time to focus on your needs, not everyone elses.
• Be Honest With Others – If you are serious about being authentic, once you’ve been honest with yourself, it’s time to be honest with others. Their response to the changes you are making, and your truthful story you are sharing, is up to them. They have a choice to embrace your honesty, but be mindful that some people will feel threatened by your newfound freedom and may not respond as you would have hoped. Your changed approach to life will be challenging in a world where everyone is so eager to put their best foot forward.

These are three basic steps to get you from treading water to planting your feet on solid ground. You may feel a little shakey for a while, but you will hopefully feel more in control of your life. You should feel a sense of peace and relief as a load has begun to be lifted off your shoulders.

You really can never underestimate the power of sharing, of being honest, of taking positive action if you feel paralysed by your circumstances. Just small steps towards taking charge of how you need to live your life, for your well-being, is all that’s needed.

Before you know it, you will be inspiring and motivating others, even if you didn’t set out to, because you are being authentic.

If you want to be happy, do not dwell in the past, do not worry about the future, focus on living fully in the present.

Roy T. Bennett, The Light in the Heart

Moving Forward

Writing this blog post and letting my readers know I’ve been treading water has already lifted my load. I’ve cried many tears, as I’ve reassessed my very uncertain future with my disease. I’ve looked back over past decisions to see if I can learn valuable lessons, and I’ve looked forward to how I can best manage the uncertainties of my disease.

While the process of looking forward and back has been a good one for me, the best thing I’ve done is to return to the current moment. The here and now is my reality. Being in the moment helps me stay on solid ground rather than treading water. Ultimately, it’s stress and worry about the “what ifs” that create so much uncertainty.

I wrote a post a few years ago called Sending The What ifs of Life Packing. It‘s well worth reading in relation to treading water. It’s all about looking at “what is” rather than “what if.”

I may not have a huge following with my online presence in comparison to others. I may not be a best-selling author. I may no longer have an amazing career in the corporate world. I may no longer be able to travel or go out much, if at all. I may be struggling financially on a disability pension and juggling constant medical costs. I may be twice the size I used to be. I may be losing my hair. However, these things are only part of my story. What I do have is precious and worth celebrating.

I love being a patient advocate. I love blogging, podcasting, and volunteering in the chronic illness community. I love that I’ve written a book. I love being a wife and am so blessed to have a loving husband. I love being a step mum and nana, a niece, an aunty, a sister, and a friend to some beautiful people who have been by my side for over 20 years, and others who are newer friends and such a gift.

It is time to dry off my feet from all that water and sit on the solid ground with a grateful heart for all that I have and, more importantly, all that I am.

Take care

Sam xx

My Podcast

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

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.

My Book

My book “My Medical Musings”, is published by Imaginewe Publishers and available now to purchase as a paperback or e-book.

Here are the links to online retailers if you would like to purchase the book:

Imaginewe Publishers

Amazon

Koorong

Booktopia

Book Depository

Angus and Robertson

Barnes and Noble

Blackwells

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

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

Please click here to read our Privacy Policy