You’ve Created A “Chronic Illness Career”….Don’t Forget To Have A Weekend!

When we think of Chronic Disease, we wouldn’t usually have happy thoughts or find ourselves looking forward to a bright future. Fear, horror, uncertainty and grief are generally the normal response.

However, the reality of living a chronic illness life can be quite liberating, as I’ve surprisingly found over the past 7 years.

One of the wonderful things chronic disease has brought into my life, is finding new networks and friends in the chronic illness and blogging communities globally.

Before becoming disabled and unable to work, I had no idea about blogging or online support forums. I never even had a Facebook account.

I always wanted to write a book but had no idea what to write about.

Fast forward to today and I am now fully entrenched in a whole new world of blogging, social media, networking groups and online support groups, either as an active member or as an administrator/owner.

My Medical “retirement” has turned into a full time job managing Twitter, Pinterest, Instagram, Facebook pages linked to my blog, my personal Facebook account, writing for The Mighty and other publications.

Added to the above is a dream come true…..I have signed a book contract, written my book and my manuscript is finished and ready for editing. Before long I will be a published author and my memoirs will be brought to life on beautiful printed pages!! I just can’t believe it!

I quite literally have a “Chronic Illness” career .

It’s A Full Time Job!

All of a sudden my sedentary, chronically diseased life, looks more like it did when I was working full time in an Executive Management role.

I’m now the CEO, CFO, Leader, Manager and Worker, all rolled into one.

We can so easily underestimate what’s involved in Patient Advocacy work, no matter what your area of focus.

From morning ’til night I am involved in some way in an online / writing activity.

I love it. There is no denying it. I love sharing, learning and supporting. I love working and I love the “Chronic Illness Career” I’ve been blessed to successfully create.

However, even when you enjoy something there is still the danger of overload and burnout.

I have to constantly rest my body, because of my physical disability, but what about my mind? Do I rest it enough?

I asked myself this question today and very honestly answered, “No, I don’t”.

I wonder how many others in the chronic illness community who are bloggers/writers, administrators or active members of support groups, are feeling like their minds are just a little too full of chatter?

I wonder how many, with chronic illness careers, think about having a proper weekend each week?

It’s Ok To Switch Off

As I quietly mused upon my response of not giving my mind a rest, it all became so clear.

It’s ok to switch off. It’s ok to have a “chronic illness career” weekend.

In fact to do so will mean you will add more value to conversations the following day on support forums. You’ll approach situations with better clarity and insight.

It’s even ok not to blog or write for a week or two.

A break from writing allows time for creativity to take flight.

It’s ok to step aside from forums you perhaps feel are not right for you anymore, or they have just served their purpose. We grow and our needs change over time. A new group with a different focus may be required.

It’s ok to say “No” if asked to be involved in something which would over stretch you.

It’s ok to commit to one or two things solely and give them your all. In fact it’s probably a good idea, especially given you are also likely working full time managing your health…..a whole different story!

Switch off your phone, tablet and laptop. Listen to the quietness envelope you. Take a deep breath and just enjoy the moment when you let your mind rest from your “chronic illness career” world.

Ahhh…it’s so refreshing. Peace is a wonderful thing.

Give Yourself Permission

I’m going to make some changes to how I work. I love my forum and it’s my number one priority. I do though need a regular weekend and I’m going to take it. No set days as I want the freedom to go with the flow a little, after all I’m “technically” medically retired so surely the regimented lifestyle should be a thing of the past.

I want more time to quietly write. Writing helps me relax. For me it is a reflective process, but when there is too much filling my mind, it’s hard to listen to any inspirational ideas lurking in the recesses of my brain.

Thinking time is essential for creativity to emerge and writers block to be broken.

So I shall still happily emmerse myself in the chatter of the chronic illness networks and blogging communities I love. However, I will now also be making every effort to ensure I take time out each week, to clear my mind and enjoy some peace and quiet.

If you feel like your blogging, writing, online focus, Patient advocacy work etc is overwhelming you, I’d encourage you to switch off regularly. Think about how you can better manage your time and involvement in social media, networks, volunteer activities etc.

Assess what’s working for you. Is it still relevant to your needs? Do you need to make changes? Is all you are doing adversely affecting your health and well-being?

“By the seventh day God had finished the work he had been doing; so on the seventh day he rested from all his work.”

Genesis 2 v 2 NIV

Give yourself permission to seek some quiet space. It has been such a refreshing experience to have a reality check and determine to make changes to how I manage my writing commitments, my blog, forum, podcast and volunteer online work.

I know it will take a little while to get my “chronic illness” work life balanced, but I’m on the right track by identifying changes are needed.

I know I will be more effective and more connected and focused on the work I love, if I give myself permission to take a step back.

Taking one or two days off a week is absolutely the right thing to do. We all need a weekend. We all need downtime.

If you are feeling overwhelmed with your own workload, created by your new “chronic illness career”, I hope I’ve encouraged you to acknowledge you are actually working and you do need to have time off each week…..just like you would if you were employed in the “abled” workforce.

Makes so much sense when you think about this way doesn’t it.

Whatever days become your weekend, I’m going to end by simply saying; “Have a great weekend”.

Take care

Sam xx

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.

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

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

I also write @ Blogs by Christian Women

I’m a member of the Chronic Illness Bloggers Network the Grace Girls Facebook Group and the Salt and Light Linkup Group

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13 thoughts on “You’ve Created A “Chronic Illness Career”….Don’t Forget To Have A Weekend!

  1. You really have got a lot on your plate, Sam, and you manage it all with such grace and aplomb. This is a well-timed post because I literally said to my mum just yesterday about how weekends are something I never think about anymore. I worked from home for the last two years earning peanuts but working my bum off every second I had where I was just about functional to do something. The rest of the time it’s everything else – house stuff, groceries, helping my folks, an abundance of medical appointments. Even now it’s so full on and the window of time where I/we are functional can get smaller and smaller – the irony is that we need the rest now more than ever, but we don’t have the time for it and the boundaries between work of any kind and time-out get very blurred. I read another post recently from Sheryl (A Chronic Voice) about carving out the time for yourself and making sure you have it, no matter what. xx

    Liked by 2 people

    1. I couldn’t agree more!! I’m glad I’m not the only one feeling this way but I’m sorry you’re in the same boat.
      I think we need to schedule our weekends (doesn’t matter which days) and treat them as seriously as we do our medical appointments. Worth a try🤪😂🥰

      Liked by 2 people

  2. Sam, this hit a spot. I’ve had an awareness page and support group for years as well as trying to participate in other groups. Add in the blog and everything that goes with it, and my time just seemed to disappear. I’d got myself into that frame of mind where I needed to do everything without giving myself time away from it all. Then last year, with everything that happened, I was kind of forced to step back a bit. I realised that was ok though and tried to ensure I continue to do so. Sometimes we need to put ourselves first.

    Liked by 1 person

    1. We absolutely do need to put ourselves first sometimes. It often takes a crisis to make us realise that though so I completely understand what you are saying.

      Liked by 1 person

  3. Wow, it’s like you live with me and wrote about MY life!! The title of this blog post immediately caught me eye (well done), as it is SO applicable to me! I have definitely fallen into this trap. Unlike in a traditional job, I am NEVER “off the clock” and find myself checking in on groups, social media, etc. anytime I have a spare moment. I do take breaks because of the limits of my illness – I am wiped out by 7 pm at night, so that’s when I lie on the couch and watch a couple of Tv shows with my husband (then we go upstairs and read in bed for an hour). And I need a nap every afternoon … but like you said, those are necessary physical time-outs. It’s rare, I take a whole “day off” even on weekends!

    Thanks for the inspiration! And congratulations on the upcoming book – that’s fabulous!!


    My Book: Finding a New Normal: Living Your Best Life with Chronic Illness

    Liked by 2 people

    1. Thank you. I hope you can find a little work/life balance. I took my own advice this week and my husband and I went on a picnic. It was perfect and I just kept wondering why I hadn’t done it sooner ❤

      Liked by 1 person

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