My condition does not work well with normal working hours (hello fatigue), working with computers (yay for nerve pain, muscle pain… everything is in pain), generating ideas and sentences (when under the influence of many medications), and generally working to a schedule (every hour every day is unpredictable and who knows about next week!). My condition has slowly turned me from a person who loved being a workaholic with rigid schedules, into a person who is learning to be flexible and accept whatever comes along.

Going with the flow of how you feel in any given moment and working out what activities are best suited to the current pain, energy and mobility levels can be one of the most challenging and rewarding aspects of this lifestyle. It makes you live in the present moment and seize the opportunity when the time, activity and conditions all align. 

I am treating this blog like every activity I want to do in my day to day life. Whenever there are limitations that is where innovation and creativity flourish! 

It started with asking lots of questions and brainstorming like this: 

Firstly, I had to address if running a blog was even possible?

Managing a chronic medical condition is a full time job in itself. It requires so much assessment on the spot about energy levels, mental clarity, time management (including rest breaks), and what activities we value and want to fill our remaining time with. When you have had difficulty with your health or physicality you can sometimes doubt what you are capable of doing, and this has been a constant concern of mine. I have reached a stage where I can manage everything better than I could in the early days of my condition – I have knowledge of how my body works and reacts, my conditions, and my daily energy levels.

How much time and energy did I have in my day, week, or month that I could dedicate to this project?

I do almost every activity in 15 minute chunks of time followed by resting – reading, social media, photography, writing notes, housework, watching tv with breaks, sewing and craft activities. I also regularly ask myself what activities do I value most, and if I am up for it, I will almost always choose a creative activity over an activity that involves consuming media.

Each day my energy levels are all over the place – I am slow in the mornings, restful in the afternoons, and usually alert, contemplative and creative of an evening. Evenings are my high power mode time and blogging is a flexible activity to do then! 

Every week I have days where I have treatment, days where I recover, and the odd day where activities are more likely to happen. When I look at each month, there are ebbs and flows where there is less treatment and more activities, and other times where a whole week is consumed with appointments, recovering and resting. I know my medical routine so well now I can predict when the energetic days may come, and when is an opportune time to do some writing and work on the blog. I work with these ebbs and flows through my days and weeks, and usually my capacity to work and my mental clarity aligns with this too, equalling better quality work! 

So if it is possible, could I maintain it with some regularity? What happens when I am not able to work on it because of my condition? 

There are other strategies I use in everyday circumstances which have easily applied to the blog too. Making sure I have a backup supply of food and medicine in case I can’t get out, directly transfers into making sure I have draft posts and photos ready in the wings if I can’t manage to create something new. Being prepared often takes a lot of work to set up and extra planning to create content before it is needed, but pays off when it only takes a little time to execute or if a blog post can be automatically scheduled to be published later. You might be reading something that I wrote two weeks prior to posting it, back when I was feeling creative and in the mood for writing, which was to be published while I was in the midst of treatment. 

Ok, so I have time and energy to do this, but self care comes first!

Getting to know how your body works with a condition and your energy ebbs and flows takes a lot of self awareness and effort, however the pay off is well worth it to enable you to pursue what you want to do. Assessing my body’s capabilities and limitations is a constant process that I undertake before embarking on an activity or agreeing to a commitment. I don’t want to cause my body any extra pain or uncomfortability if I can avoid it, and there are days when I know that I can tolerate a bit of pain or when I know I need to go gently. 

Working with rules and boundaries helps too. When we know where to draw the line and it has already been decided, we aren’t fatigued by making the decision over and over again. Self care is a priority over all the hobbies and activities I want to do – including this blog. I wrote out some personal rules, like my own HR policy, so I know when or when not to work, and how I work on the blog. One of my rules is to not work after medical treatment or while recovering. Another rule is to take time out to contemplate and meditate prior to writing, and get myself in a good mood and mindset to feel creative and inspired. As with anything there is always admin and maintenance which are great tasks for days when I don’t feel creative but still want to be involved on the blog. Making sure I am comfortable and in an ergonomic posture is a must for preventing aches and injuries. 

How to actually do it?

Using a computer screen has been a hurdle with my condition and it had been a few years since I had done any solid work on a computer. I have edited photos here and there, updated my devices, and worked on anything that couldn’t be done on a smaller device, but it has been a long time since I opened a document and wrote a page or two. Even now when writing blog posts, a computer is not something I would use unless I had no other choice – thankfully we have choices now!

Setting up a blog site and the process to maintain it was something very new for me and a bit daunting. I asked my best friend to help me do research on topics that would have been too lengthy for me to undertake and asked for lots of advice. Any help to lighten the research and decision making load – both of which are tasks that can be draining when we are also doing so much of that in regards to our conditions.  

I decided to do the hard work upfront, taking the time to set up the blog site and most of the content before launching the site. This not only gives me a huge collection of photographs, quotes, poetry and ideas to draw from, but also means that it will be easy for me to creatively put together in the future – rather than searching all over the place to find something every time I create a new post. 

Luckily, blogs have come a long way since I first started reading them 15 years ago! Now there are website platforms that are ready made with templates that are so much more manageable than building a full scale website from scratch. Technology that is widely available has made it accessible for people like me who may not be able to type or read on screens for extended periods of time. I don’t even have to look at a screen to record my thoughts and I can post it straight from a smartphone! 

If I can’t use a computer for any period of time, what is the next best option to use? A smartphone or tablet with a smaller screen? What other technology or apps are available that could streamline and simplify the process to have minimal impact on me and my condition? 

As far as the technological side of the blogging project is concerned, there are many ways around the limitations and challenges. There is also so much technology and apps available to us to help manage – dictation, voice memo recordings, apps that read the text aloud, presets for fast and simple photo editing, cloud drives enable us to access documents and photos from anywhere, and blogging apps that you can create and publish blog posts from directly. 

Apps that time how long we have been working for and remind me to have breaks are fantastic when I get too inspired and fall down the rabbit hole! Usually my pain reminds me to move every 10-15 minutes, but a solid reminder to have a break, look away from the screens or whatever you are doing really does help. There are now blue light filter apps that soften the effects of the light from screens and physical anti-glare filters to aid focus without squinting.

Some days the pain overrules everything so I call a timeout on working on anything. Some days writing in a journal or a voice memo recording will have to do until a day arrives where I can dictate or type it up into a blog post. It is all about working with what you can manage to do, being gentle on yourself about your limitations and a little optimism that a day will come when you can do it. 

As I am just starting out here, I will probably refine my process and management of the blog along with my condition – as humans we are constantly evolving! I am sure there will be a Part 2 to this post down the track to let you know of helpful things I’ve learnt along the way.

As always, if you do have any suggestions please leave a comment for me. 

Take care Readers. Thanks for coming along on this journey with me!