How I've Found Joy Again Despite Being Housebound

Living with chronic and disabling disease requires a complete change of lifestyle, a complete change of thinking.

Gone are the days of waking up in the morning and jumping out of bed to have a quick breakfast, getting showered and dressed, and then heading to work or some fun planned day full of anticipated activities.

Losses are real, and at times, incredibly hard to come to terms with. There is no denying that.

However, chronic illness and disability doesn’t have to be the end of the world.

Those old halcyon days can be replaced with a different kind of lifestyle — a simpler, easier and less-planned approach.

A life with severe chronic illness can still be full of happy, special days and activities. They just need to be “simply” special.

Over the past four years, I have become more and more disabled. Despite that, my joy, my purpose and my love of life has actually increased as each year has passed.

A new life has gradually evolved, and I honestly am at the point where I can’t imagine living any other way than how I do now.

I value everything. Every moment, every conversation and interaction is special.

Instead of fighting to hold onto my old life, I’m using my limited energy, my talents and anything I can muster, to carve a new, manageable lifestyle. It’s unique to my needs, but it’s perfectly formed.

My failing body can dictate a lot in terms of limiting physical activities, but it doesn’t have to dictate my happiness.

I’m living, I’m alive, and I count that as an enormous blessing. It’s a blessing I don’t want to squander in self-pity or in a state of permanent grief or denial.

Don’t get me wrong, chronic illness is hard work and it will seek to take as much as it possibly can as it relentlessly attacks. We can easily find ourselves in a black hole that has no light at the end of the tunnel.

There is a light though. As a Christian, I have my faith and while that helps enormously, it doesn’t exempt me from feeling despair. I have those moments. I’ve lived through horrible mental battles that have made me question how I can possibly face day after day with my rare disease.

The thought that has always got me through is, “I’m still alive…there must be a reason for that.”

The day my femur broke, I was told it was a miracle that my femoral artery wasn’t severed. Apparently the way it broke it was so close to the artery, I had just avoided death. I had no idea. Thank goodness!

I can’t take this life for granted. It’s a gift, regardless of my health status.

A simple life it may be, but I’ve created what I call a “simply special” life and I love it.

A few of my “simply special” things include:

Puttering around my home and cleaning in a super-paced way. It takes me all week to get through the weekly tasks, but I feel a great sense of achievement. Yes, it hurts, but the pain isn’t going to kill me. Not trying to move my body might though, so for as long as I possibly can I’m going to keep up my sloth-like puttering.

Watching TV in an entirely different way. I really listen to the words spoken. I follow the plot and I analyze the script writing and scenery. I love documentaries about nature. I never used to watch them in my “past” life. I love travel shows that are not about advertising holidays, but about travel through countries with amazing, different cultures and histories — all through the eyes of adventurers. I soak it up.

Learning. Something will spark my attention, and I now have time to research topics of interest and really learn about them in depth.

It’s no secret that I love writing. I’ve always written in a journal, but now I can indulge in blogging and writing articles whenever I feel inspired. As a result of my blog and online support forum, I have connected with people from all around the world.

I enjoy listening to music every day. I can play music while I’m getting dressed and can take as much time as I like (just as well, as it’s a slow process). I have learned to savor this time everyday.

With these things, despite my housebound existence, I’m often left wondering where time has gone. My life is full and my days speed by in a blink of an eye. I’m never bored and mostly I feel like I need an extra day each week.

Gone are my days of physically running around, but those days are well and truly replaced with “simply special” things that I can manage lying on my bed or sitting in my lounge room. They can be done at 2 p.m. in the afternoon or 8 p.m. at night. It doesn’t matter. They are not agenda or time driven.

If you are severely disabled by your chronic illness and still trying to live a semblance of your “healthy days” life, please stop. Stop what you are doing and think about how you can find joy in “simply special” things.

They might be activities that are very different to mine, but they will be unique and special to you.

I hope you can find joy and purpose in a “simply special” life. It might take time, but it can happen despite chronic illness. Don’t lose hope.

“A pretentious, showy life is an empty life; a plain and simple life is a full life.” — Proverbs 13v7 (The MSG)