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 causes your disease to suddenly seem so surreal.
Something threatens to once again create a world of chaos and disorder.
Something forces you to find another new norm.
Surreal and Scary
As I sat across the desk from my Spinal Surgeon, my brain was working overtime trying to digest all he was telling me. None of it was great news.
He firstly said, to lighten the mood a little, my name constantly comes up in the Drs hospital cafeteria and my case is discussed (kind of reassuring…I think!).
I had flashbacks to shows like New Amsterdam and The Good Doctor. I was the special case creating a medical dilemma.
He went on to show me my recent MRI and explained I have some kind of growth/lesion in the caudal space in my lumbar spine at L5/S1. It’s growing within the nerves and likely this is causing the intensity of low back pain and increasing mobility issues.
I may be a candidate for a spinal cord stimulator implant, which would be surgically inserted under the skin. This means pain may be reduced because the electrical pulses modify and mask the pain signal from reaching your brain.
It still has risks though and is something needing careful consideration.
He has discussed my case with other Surgeons who all agree more surgery is now too risky. They believe my spine (due to diseased bone) is not strong enough to deal with fusion surgery and if tried, it could make a bad situation worse. They don’t feel it would be right to take that risk for me. My gut feeling is they are right. I have not felt comfortable with the thought of more surgery.
At this stage he explained, it’s looking like we are at the point where the disease has progressed to the level where it’s outside of the reach of medical intervention. (aside from persisting with pain meds/medical cannibas).
It was hard to hear much else after that.
A Second Opinion Perhaps?
And then it happened. The most surreal, unexpected moment of all……
He looked at me and said, “I would like you to consider getting a second opinion”
Oh my goodness, another Specialist to add to my list, to recount my story to! It seemed like the last straw, but he explained he would refer me to someone he trusted, who would do a “deep dive” into my case, just to make sure we weren’t missing something.
He gave me time to digest this option. Three weeks until my next appointment, at which stage we’ll review the results of the Nuclear Bone Scan he’s sending me for, and sort out relevant second opinion referrals.
He also wants me to have an Oncology review and to have them regularly. I saw an Oncologist in 2016, who he knows, so he’s writing to him. Every now and again my MRIs are reporting slow moving malignancy (leukemia or myleofibrosis). We can’t ignore this possibility.
I have other priorities too…..A Cardiologist review to see why my heart is enlarged and a Medical Cannibas Specialist appointment, to get the ball rolling to try this pain management approach.
This Day Was Always Coming
My husband and I knew this day was coming with my disease and we know it will get worse as further areas are attacked.
I already have 6 foot fractures that will likely never heal, a non union broken femur and a broken/damaged spine from neck to coccyx at various stages of disease. My collarbone, jaw, sinus bones, knees, shoulders are all affected on some level.
This rare bone disease is insidious. It attacks without warning and when it does, it seems to know no limits.
I thought I had a good handle on the nature of my disease and in general I do.
However, the latest attack on my spine has been so severe every aspect of my life, our life, needs to be reviewed further.
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 I’ve been trying to hold on to.
My pain levels in my lower spine are currently unbelievable and unrelenting. They are beyond anything my broken femur threw at me. The consistent throbbing is almost audible.
So far conservative treatment has failed, including two lumbar laminectomy/decompression surgeries and Radiofrequency Neurotomy from l3 to S1.
Big decisions are confronting me at every turn.
I know I will find a way to adjust. I always do, we always do. At the moment though I am being swamped in a sea of surrealism.
I’m so glad we made the move to our new low set home in a Lifestyle Village five months ago. One less thing to worry about.
We do need to continue to review our needs though. The bathroom will need to be made into a wet room and some other structural changes will be required, when/if I end up in a wheelchair permanently.
For now I have to shake off this surreal feeling raising it’s ugly head. Not easy when exhaustion levels are so high due to unrelenting pain, but I’m determined to move forward and accept this new level of disease progression.
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 steps towards practical lifestyle changes required, and fully weigh up the discussion with my Surgeon. 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 me relax. Something that centres me and reminds me some old norms will still remain.
Swimming Through The Sea Of Surrealism
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 I will begin to feel better. A small decision will be made that is a catalyst for a larger change. Before I know it I’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
WEGO Health Award Nominee 2019- Best in Show Blog