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, get showered and dressed, head 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 it.
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 more simpler, easier and less planned approach.
A New Kind Of Special…Simply Special
A life with severe chronic disease can still be full of happy, special days and activities. They just need to be “Simply Special”
Over the past four years my life, on a physical level, has become more and more disabled. Even so 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.
Looking For The Light At The End Of The Tunnel
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 that helps enormously but 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 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 was so close to death. I had no idea….thankgoodness!
I can’t take this life for granted. It’s a gift, even if it is in a crippled state.
A simple life it may be but it’s a “Simply Special” life and I love it.
A Few Of My “Simply Special” Things
I enjoy pottering 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 huge sense of achievement.
Yes it hurts but the pain isn’t going to kill me. Not trying to move my crippled body might, so for as long as I possibly can I’m going to keep up my simple pottering.
I enjoy watching TV in an entirely different way. I really listen to the words spoken, I follow the plot and I analyse the script writing and the 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 culture and history through the eyes of adventurers. I soak it up.
I’ve always loved 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 savour this time everyday.
These are a few of my favourite things. There are more and they are all “Simply Special”
Where Did That Week Go?
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 in the week.
So gone are my days of physically running around, but those days are well and truly replaced with “Simply Special” things I can manage lying on my bed, or sitting in my lounge room. They can be done at 2pm in the afternoon or 8pm at night. It doesn’t matter. They are not agenda or time driven.
If you have found yourself severely disabled by your chronic illness and are still trying to live a semblance of your “healthy days” life……. 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. They will be unique to you. They need to be special to you.
It may be you are struggling more than usual with the restrictions placed on us all due to the Coronavirus. Life is just not normal. The rug has been pulled from under everyone’s feet. Whether healthy or living with chronic illness, most people are trying to find ways to live in and through this crisis.
I hope you can find joy and purpose in a “Simply Special” life. It might take time but it can happen, despite chronic disease, despite this Coronavirus pandemic.
Don’t lose hope.
If you’re looking for genuine support, care, understanding & 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 & complex diseases, who truly understand the daily challenges. A warm welcome awaits.
I’m also a Contributor at “The Mighty”. You can check out my published articles atMy Author Page
I also write @Blogs by Christian Women