After a week of appointments and feeling absolutely shattered, I looked at my calendar for the next day and it revealed a blank page. I breathed a huge sigh of relief.
Most of my days are a blank page. This particular week had been an exception to the rule and I was suffering for it.
I need to live life with a calendar full of blank days, especially if I want to live well with my broken body.
No planning ahead, no great expectations, just living moment by moment. It’s a relief that I can mostly live my life in this way. The thought of having to do it another way is unimaginable, especially as my disease progresses.
The Rat Race Is Over, Or Is it?
So different to my previous life of constant meetings, appointments, phone calls, emails, texts, long working days etc. I’m ok with that though. When I was in the rat race I would dream of having a blank calendar day.
Funny how life works out isn’t it.
Medical Musings With Friends, my online support forum, is my main daily focus now (next to my hubby of course……oh and my blog/writing).
I love that despite my own health limitations, my forum allows me to muse daily with others living with chronic illness across the globe. It is such a joy and honour for me to see friendships form and burdens shared, as we climb chronic illness mountains together.
It can also be exhausting to own an online support group, particularly if it’s your calling and you care deeply.
I invest so much of myself in it because I’m passionate about supporting people. I chose to start the group, it’s my responsibility and it’s linked to my blog/my brand.
The intention was to have the 2 platforms interlinked. I always wanted to share my blog posts with others who were journeying with complex diseases and trying to find ways to accept their circumstances. A blog and linked forum seemed like the best approach and I feel incredibly blessed my vision has become a reality.
If my experiences can help even a few readers and members, my work is not in vain.
I’m learning though I need to give myself permission to walk away from time to time, and let my Medical Musings Friends muse among themselves. Just while I rest a while and allow myself to digest all the stories I take on board.
I love my forum is now 3 years old, I have an amazing team of Moderators helping me. The members are also well and truly capable of caring for each other, without me needing to be involved in every conversation. I count that as success!
I need to make sure I don’t create a new “rat race” for myself and I know my members, my chronic illness friends, wouldn’t want me to either.
I also need to acknowledge my “blank calendar days” are not empty. They are full of achievements equivalent to climbing real mountains.
Most of our members can’t do great physical inspiring things like climbing bridges or mountains or running in marathons.
Our members do climb virtual mountains daily though.
In the midst of their pain and disability they look after families. They clean a room in their homes. They manage to get showered and dressed on their own. They make it out to a cafe. They comfort another despite their own suffering.
None of these things are easy. Each activity represents Mount Everest.
My forum members are so inspiring.
Walking A Fine Line
It is a fine line we walk when living with a chronic disease.
If we are not careful, we can become defined as the person with lupus or multiple sclerosis, cancer, rheumatoid arthritis or a rare disease.
We are so much more than our diseases. It’s OK to show others our strength of character, our funny side, our happy side, our lighter side, our talents.
It’s OK to share our hopes and our dreams for the future.
It’s what I love about my forum. I love that the members share the highs and the lows. The challenges and the triumphs.
I love that we laugh together and cry together. I love that we are free to express to each other our deepest thoughts in a way that is raw and real.
We share our love of books, music, movies. We share our faith. We share our hopes and our dreams and when these are crushed, as they often are, we pick each other up.
We help each other re-build their lives with new hopes and dreams.
Every person, living with a chronic disease, achieves more than they realise, every day.
So if you have a chronic illness and have woken to a “blank calendar day”, remember your day will be full of climbing mountains.
You will be achieving so much. You are amazing and it’s a privilege to climb alongside you all.
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
If you would like to read a little more about my journey, here’s the link to My Story
WEGO Health Award Nominee 2019- Best in Show Blog