(As published on The Mighty)
What are the rules for living with a chronic illness or rare disease?
Where can I find the rule book to help me manage, especially when all my symptoms are flaring and are “Off The Charts”?
This is the question my husband and I have been contemplating over recent weeks.
How do we know when we should worry and seek medical attention?
How do we know if I should ignore new symptoms, especially when we know my rare disease is progressive?
Is worsening pain an indicator or is it just par for the course?
Should I try and push through and get out a bit more, despite excruciating pain and increasing disability?
When I suggested this great idea of mine, you should have seen the look on my husband’s face. It was priceless and read like a book of horrors.
“What on earth is wrong?”, I asked.
His response was slow and measured. He did want to take me out but……
He confessed he is petrified that the pole in my femur might snap (thanks to my surgeon for putting this thought and vision in our minds!!)
Yes, the pole is past its used by date because it’s been supporting my non union femur break for too long, and is at risk of fatigue. Yes, it needs replacing but all my surgeons concur, unless an absolute emergency, more surgery is too risky for me. I completely agree with them. I’ve had way too many surgeries, I’ve aspirated twice under general anaesthetic and my body needs a rest.
A Sudden Change From The Norm
When you’ve lived with Chronic Illness for a number of years, at some point, you adjust to the anomalies of your own disease. You eventually find a new norm or at least a perceived new norm.
You might expect a few highs, lows and some disease flares along the way, but generally life evolves into a settled and usual 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.
As I sat across the desk from my spinal surgeon recently, my brain was working overtime trying to digest all he was telling me. None of it was great news.
I was there because I had a worsening of symptoms which had gone on for longer than four days. I’d sent him an email explaining my situation and concerns and I was given an urgent appointment for the next day.
He firstly said, to lighten the mood a little, my name constantly comes up in the doctor’s 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 now the special case creating a medical dilemma. Not really the role I want!
He went on to explain, at this stage, we are at the point where the disease has progressed to the level where it’s almost outside of the reach of further medical intervention.
Keeping me as comfortable as possible is our main focus.
It was hard to hear much else after that.
I tuned in again when he said he wanted me to have an oncology review and to have them regularly. I saw an oncologist in 2016 as every now and again my MRIs are reporting slow moving malignancy (lymphoma, leukemia or myleofibrosis). We can’t ignore this possibility. We can’t ignore this may eventually prove to be the cause of my rare bone disease.
He also said he can’t leave me at this level of pain at my age. He has organised a surgical second opinion consultation, with one of his colleagues, to ascertain how we can safely take the pressure off my lumbar spinal cord.
Where’s The “Off The Chart” Rule Book?
So, the dilemma is how to live every day under these circumstances. What do you do when pain and symptoms are “Off The Chart”! No one has written a rule book. No one even knows what my disease may do next. It’s erratic and without precedence.
Pain and fatigue limits me, disables me, renders me useless most days. I guess that’s our best indicator of what I should or shouldn’t do.
Just listen to my body. Let it guide me.
Does it sound paranoid to not push my body? Or is it just being realistic?
Whether consciously or subconsciously, we tend to adapt our lives in accordance to knowledge.
Before my leg pathologically snapped in two, my husband and I were oblivious this kind of event was even possible. I should have been in a major car crash to sustain the extent of this injury, but I was simply walking towards my bedroom door at the time. Blissfully just getting on with life.
We had no idea I had this rare disease and a major emergency could, and would, unfold at any moment. We had no idea my femur bone was so diseased it was about to spectacularly break.
So, as a result of this life changing event, we decided to create our own rules or guidelines in conjunction with my medical team. The list is short and sweet so far:
1. Listen to my body
2. Avoid crowds
3. Accept help
4. Keep enjoying the simple things in life and be content.
5. Employ the “Four-Day Rule”
Rules 1 to 4 are straightforward but let me explain the “4- Day Rule”. It’s probably the most important of all my current rules.
The Four-Day Rule Explained
My symptoms can flare daily and my pain can be off the charts. I can go from being able to walk with aids to being completely crippled. It’s scary at how quickly my physical symptoms worsen.
So, do I call an ambulance everytime I’m paralyzed or have increasing bone pain? We know, in general, not much can be done. My Specialists have all confirmed as much.
My feet fracture constantly and unless the bones are displaced, there is no treatment. Do I go to ER everytime a foot bone snaps?
Honestly, it’s just so hard to know now when to push the “urgent medical attention needed” button.
What if my new symptoms aren’t even related to my rare disease?
I had to find a solution to this dilemma so I created my “Four- Day Rule”.
Over time I’ve worked out that some of these scary symptoms will settle within four days. Each day they should be a little easier to live with, so long as I rest, and readjust my expectations of what I think I’m capable of.
If after four days there is no improvement, it’s time to pack my bag and ring an ambulance. They will take me direct to ER and I am always admitted to a ward within an hour.
That’s pretty good service and I receive it because my Specialists know I have a “Four- Day Rule”. They know I am in a bad way when I implement this rule and they know the last place I want to be is in hospital. As much as I love my medical team and hospital, I love my home more.
Sometimes after four days, my symptoms may still be worrying me but not worsening. If that’s the case I’ll just email my specialist rather than call an ambulance. They usually make an urgent appointment for me to come and see them once they receive my email.
Really the rule of thumb is, if you have a worsening worrying symptom, never hesitate to seek medical attention. If however you know your disease well, and how it ebbs and flows, the “Four- Day Rule” could save you from unnecessary financial burden, exhaustion from being in hospital or in a doctors waiting room, plus it can save your doctor a lot of time too.
I think if we do it will always be a work in progress. It needs to be very flexible and even if it was written, it couldn’t possibly be one size fits all. When it comes to rare diseases in particular, everyone is unique.
After all is said and done, I think the best approach, when pain and symptoms are “Off The Charts”, is to take one day at a time and listen to your body. Perhaps when you’ve lived with your disease for a few years, my four-day rule may work for you, or you’ll come up with something similar.
Constant doctors appointments and hospital visits are exhausting, so if we can find ways to limit them, it really can help our overall well-being.
Do you have any chronic illness rules that help you manage your disease, and provide a framework for dealing with the unexpected? I’d love you to share them. Perhaps together we can find ways to cope on those days when we are not quite sure what to do.
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.
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