I’m not talking about the weather, it is the most glorious day outside.
I’m sitting in my favourite chair doing what I love most….writing.
I really should make the extra effort to get out of my armchair, grab my crutches, grab my phone, grab my coffee and go outside……hmmm, can’t quite achieve that! Not with broken bones and my early morning pain levels.
I’m grateful I’ve made it to my chair this morning and have a coffee! I’ll celebrate this achievement as it is huge!!
Reality Verses Dreams
Every morning I always have a list of “I should do this, or I should do that” buzzing in my head.
In my minds eye I run around the house with the energy of 2 or 3 people, achieving so much. Then, I get out of bed and try to stand up.
Reality sets in and all those wonderful tasks, which moments ago seemed so easy, suddenly are insurmountable.
I do however amaze myself everyday as to how much I achieve. I might not be able to do everything I want to do in an hour, but with careful planning and pacing it is possible to get through a realistic daily “to do” list.
The list needs to be shorter than it once was, but to have a sense of achievement at the end of the day, is so important when living with a chronic disease.
Let’s Deal With The Fog First
The fog I’m talking about is the one that follows the morning medication. The pills are necessary to get my body moving at some point in the day, and to dull my over active immune system. Their aim is to slow permanent disabling joint damage from Rheumatoid Arthritis and to manage the unrelenting pain from my rare bone disease.
However, they render me almost useless for the first few hours of my morning. I feel like I need to constantly shake my head to get it working.
Are the pills worth it?
I ask that question over and over but I know they are keeping my Rheumatoid Arthritis symptoms mostly under control, and without the pain killers for my non healing broken femur, foot fractures, unstable broken spine and widespread bone pain…well, I don’t know what I would do.
So I shall sit here for a little while longer with my musings.
Eventually the fog will lift, just enough for my body to move a little more freely and I will feel more connected to the day.
I love it when this happens!
Musing About My Future
I’ve decided to have a reflective kind of day.
I’ve been so busy over the past few weeks with a new Vlogging venture. I’ve been testing the waters to see if this is an avenue I can realistically commit to. There have been a number of factors to consider:
- Can I physically sustain this activity?
- Do I have an audience?
- Do I have good enough content?
- How often should I Vlog?
- Do I have the necessary equipment?
- Can I afford to upgrade my equipment?
- How would this affect my writing/blogging commitments?
- Do I want to go public on a You Tube channel?
As I carefully considered each question, I quickly realised I have spent so many hours filming and editing over the past 3 weeks, and in all honesty I really have only connected with a handful of people.
I poured my all into it and was left with nothing more to give.
I’ve compromised my health and have new stress fractures throughout my body as a result.
I’m exhausted, despite enjoying the process. I really have loved doing it so to say I’m not disappointed I can’t continue, wouldn’t be honest.
My whole aim was to use the Vlogs to create a deeper personal connection with members on my online support forum.
If I was able to achieve this deeper connection goal, I would find a way to continue. However, it’s clear the effort and sacrifice is not going to make a difference to my group on a significant level.
The reality is, most of my forum members are so chronically ill and busy with their own lives, watching vlogs does not, in general, connect with their needs.
Online general chats via posts, small snippets to read at their leisure, the segments we run on the forum….these are the things members connect with.
Sometimes we have good ideas which turn out to be not so great afterall.
Sometimes the timing isn’t quite right. Sometimes it’s a case of testing something out and feeling content to know you at least tried.
So I’m reflecting on my journey so far and what might lay ahead.
At this stage all I can come up with is……The unknown, the known and perhaps the maybe!
The Unknown, The Known And The Maybe
A diagnosis of a chronic disease brings constant change. We can fight it or we can work to build a new version of ourselves. The new version will be different but can be beautiful.
Everyday I continue to say goodbye to more of the old and am learning to embrace more of the new. I won’t pretend it’s easy because it’s not. It’s an ongoing process but it’s a much easier process when acceptance replaces fighting.
It’s so important to accept some goals will fail. It’s ok to try and not succeed, especially when working on living the best life possible with chronic illness.
Denial of failures isn’t going to be helpful long-term.
It’s at the point of acceptance, something new can emerge, just like the butterfly comes from the cocoon.
Will I Vlog again?
Maybe. Not regularly. Not for a while. I need time to recover from the effort of my recent “Week in The Life of Sam” Vlog.
I need time to decide if “my voice” is best in the written form or if I do Vlog in the future, should I just include it in a general blog post, rather than on my forum.
I was Vlogging exclusively for my Forum members which dictated the content to some degree.
Maybe I need to rethink this strategy and give myself more creative freedom.
Something to muse about. This remains firmly in “The Unknown” category.
“The Known” category is a little clearer:
- Continue to administer Medical Musings with Friends;
- Continue to Blog;
- Continue to write for The Mighty. You can check out my published articles at My Author Page;
- Continue to Volunteer online for Arthritis Queensland;
- Continue to look for ways to meaningfully connect with chronic illness sufferers, who are looking for a genuine caring community to join;
- Ensure my relaxation time is increased;
- Ensure I spend more quality time with my husband;
- Try and get out of the house once a week, even for a 15min country car drive.
There is a “Maybe Worth Thinking About” list!
- Should I try doing a Podcast instead of Vlogging?
- No special equiment needed for this;
- Just my voice to relay special messages;
- I don’t need to look presentable, which means I can record my Podcast at night lying on the bed, or anytime I feel led to share something;
- I can keep them short;
- I can trial it without exhausting myself.
Food for thought. Something more to muse about.
The 3 R’s
Anyway, at this stage I need to concentrate on recovery and my “Known list”.
I need to refuel.
I need to reassess.
I need to revise my priorities.
So I’m taking some time to muse with my 3 R strategy…..
“ Recover, Reassess, Revise”….. actually maybe 4 R’s.
“RETURN….with new purpose and vision.
A Week Later…
I’ve done it…I’ve taken a leap of faith and started my Podcast.
My new Podcast, Medical Musings with Sam, is now live on Spotify and Anchor.
It includes the trailer and five full episodes.
I’m so looking forward to sharing an audible version of my most popular blogs posts. I have written over 240 articles over the past 5 years and a Podcast seems like the next best approach to reach out to a whole new audience.
If reading is difficult for you and watching videos too tiring, I hope my Podcasts will be just another tool, in your chronic illness toolkit, to help you live your best life possible.
It will also be available on Apple Podcasts, Google Podcasts and ITunes very soon….so exciting.
My Story, is the first episode of “Medical Musings With Sam” followed by episodes on the theme of living a full and fulfilled life with Chronic Illness.
You can check them all out here on my Podcast link, Medical Musings With Sam
I hope you find some takeaways to help you live as well as possible with chronic illness.
If you prefer an audible blog post, please check out my Podcast, Medical Musings With Sam