When you’ve lived with Chronic Illness for a number of years, at some point, you adjust to a new way of living. You eventually find a new norm.
While you might expect a few highs, lows and some disease flares along the way, generally life evolves into a settled and comfortable pattern.
Until it suddenly, without warning, doesn’t anymore!
Sometimes after years of living a new and well-adjusted life, something changes. Something that causes your disease to suddenly seem so surreal.
Something that threatens to once again create a world of chaos and disorder.
Something that will force you to find another new norm.
Surreal and Scary
My rare bone disease is the biggest concern in terms of progression and worsening disability. I have known that since the outset.
It’s insidious. It attacks without warning and when it does, it breaks my bones and refuses to heal them. If it doesn’t break them it destabilised them, causing excruciating pain as the bones die.
I thought I had a good handle on the nature of my disease and in general I do.
However, the latest attack has been so severe every aspect of my life needs to be reviewed.
It’s surreal and I need to admit to myself……it is scary.
In the space of 2 months I’ve gone from being chronically disabled, using crutches and a walker to mobilise, to severely disabled, with the very real possibility of being permanently in a wheelchair. Permanently unable to do some of the simpler day to-day basic care tasks without help.
My pain levels in my lower spine are currently unbelievable. They are beyond anything my broken femur threw at me. The consistent throbbing is almost audible.
So far conservative treatment has failed and even my recent lumbar laminectomy/decompression surgery may not deliver the desired results.
Big Decisions At Every Turn
Big decisions are confronting me at every turn.
I know I will find a way to adjust. At the moment though I am being swamped in a sea of surrealism.
My issue is the life my husband and I currently live, doesn’t fit a wheelchair bound scenario.
Our home is all wrong for a start. We need a low set home and it needs to be a little smaller and manageable.
The thought of making such a huge change in our lives, while I’m looking down the barrel of more surgery and a long recovery, is so daunting. Even without the prospect of surgery, my pain is just so constant I need stability, not change, to help manage my situation.
I’m not physically capable of doing anything to help with a house move. I can thankfully organise anything that’s thrown at me, so I’ll be focusing on using this skill to facilitate any necessary changes.
Before any of that can happen I have to shake off this surreal slump I’m in.
Shake It Off
Don’t worry, I’m not about to break out in a Taylor Swift song.
I’m going to work through a process of how to shake off this surreal situation and bring it into the world of realism. Better still, I’m planning on making my new reality my new norm, as quickly as possible.
So here’s my plan:
- Allow myself to feel the shock and horror of my situation. Denial of these feelings won’t help me move on.
- Take a little time out from normal activities to digest what’s happening to my body. My brain needs to catchup with the physical manifestations of my disease progression.
- Talk with my husband about how I’m feeling and what these changes will mean for both of us. Talking out loud helps to make a surreal situation more real.
- Begin talking to family and close friends about the changes we are facing.
- Start taking practical steps towards changes required. Researching various options is a good starting point.
- Make lists. Writing down the details of required changes also helps make a situation more real. It’s gives a sense of ,”ok we are really doing this”
- Rest. When life throws us challenges that rock our world, we need replenishing. Rest is vital to keep as positive an outlook as possible. That doesn’t necessarily mean sleeping but just doing something that helps you relax. Something that centres you and reminds you that some old norms will still remain.
Feeling A Little Better
When life suddenly seems so surreal, it’s not going to just as suddenly become all ok.
Shock is involved and that takes a little recovery time. The grief process is revisited yet again.
Little by little you will begin to feel better. A small decision will be made that is a catalyst for a larger change. Before you know it you’ll be on a journey towards a new norm.
So as my sea of surrealism keeps washing over me, I’m going to remind myself I have a good track record of adjusting.
I’m going to remind myself that I have a solid simple step plan to follow to help me move through the deep waters to the shoreline.
I’m going to remind myself life will evolve into something beautiful again.
I’m going to remind myself that God has always provided me a safe passage through the storms of life, no matter the depth of the challenge.
With that thought, peace and hope returns.
Life will be ok. Different but ok.
I’ll be ok!
Will your anchor hold in the storms of life
Will your anchor hold in the storms of life,
when the clouds unfold their wings of strife?
When the strong tides lift, and the cables strain,
will your anchor drift, or firm remain?
We have an anchor that keeps the soul
steadfast and sure while the billows roll;
fastened to the Rock which cannot move,
grounded firm and deep in the Saviour’s love!
2 Will your anchor hold in the straits of fear,
when the breakers roar and the reef is near?
While the surges rave, and the wild winds blow,
shall the angry waves then your bark o’erflow?
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.
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
If you would like to read a little more about my journey, here’s the link to My Story