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What I'm Doing to Calm the Tides of My Chronic Illness

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I was sitting at our local cafe this week, which is situated on a point overlooking the bay and beautiful islands beyond. It really couldn’t be more idyllic, and I am blessed to live so close to such a gorgeous place on Australia’s east coast.

As my husband and I were sipping our cool drinks and soaking up the gentle sea breeze, on what was a mild summer’s day, I was fascinated at how quickly the afternoon tide was beginning to roll in.

Only moments before, the water was still and there was no sign of change. All of a sudden, ripples could be seen and the mud flats began to disappear before my eyes.

I rarely get out due to my health, but this is one special place that I can manage on a good day and it’s perfect to sit back, relax and contemplate life. My thoughts turned to how quickly the tide changes in our lives when living with chronic illness.

One minute, everything can be calm and stable, and the next, we are inundated with symptoms flaring, numerous medical appointments, X-rays and scans, blood tests, poking and prodding, emergency trips to hospital, and feelings of bewilderment and concern. The tidal waves keep loudly crashing around us until the crisis is over and the seas are calmed.

I have one goal this year: stay on calm water.

There’s been too many years of tidal waves crashing over me with my health. I know most of that wasn’t within my control, but I have learned some lessons that I’m hoping will keep me out of the firing line of sudden tidal changes.

As I looked to the right of where we were sitting at the cafe, there was a green tree standing tall and safe as the tide began to creep around it.

My aim is to be like that tree this year — standing above the creeping symptoms of my disease and not allowing them to overwhelm me and drag me under.

So while I know some health events will definitely be out of my control, my plan to simplify my life and avoid anything unnecessary includes:

Reduce medical appointments
. I have six specialists on my medical team, plus a GP. I have been seeing five of them every three months. With the agreement of my doctors, less appointments means less running around and more time to enjoy “non-medical” activities. This year we are reducing to six monthly appointments for each specialist. We have spread these throughout the year so I am not overloaded at any one time. If I do need to speak to them in between, they are happy for me to e-mail, phone or make an extra appointment.

Reduce regular tests. I need regular blood tests to monitor a number of my autoimmune diseases, as well as regular X-rays, bone scans and bone density tests to monitor my rare bone disease. In consultation with my specialists, we have reduced my blood tests to bi-monthly and my X-rays/scans to every six months.

I’m feeling a sense of relief just writing this.

Avoid surgery unless it’s an emergency. I’ve had seven surgeries on my legs over three years. I’m exhausted. In the last two, I aspirated while under general anesthesia. My surgeon and I have agreed “no more surgery” unless a life-threatening emergency occurs.

Know your disease. This is probably the biggest key to simplifying my life with chronic illness. I’ve been diagnosed with rheumatoid arthritis and Sjogren’s syndrome for eight years now, and it is pretty much under control. It flares, but I know we can’t change my medication because of the risk it poses to my bone disease. We have reviewed every possibility in terms of appropriate medication and we’ve brought in other rheumatologists for consultation. We have exhausted our options. I just have to manage my autoimmune disease flares conservatively with rest, heat packs and pain meds. It is what it is.

My bone disease is my biggest concern. It is completely unmanageable and has a life of its own. I have however, discovered what is an emergency (pathological major fracture or pole breaking in my leg) and what is something I just need to live with (constant foot stress fractures, muscle atrophy, muscle bleeds).

I’ve also learned with my bone disease that any significant increase in pain or symptoms will usually reduce to manageable levels within four days.  If not, I need to call my team.

Get out more
With less appointments, I won’t have to conserve my energy to be able to get to them. To prepare for an appointment, I can’t go out for the week prior and I need at least another week to recover. With the amount of appointments and surgeries I’ve had over the past four years, we have only been able to get to a cafe a handful of times, and we have only taken my mobility scooter out twice since I got it seven months ago.

That has to change, and now it can.

I will be able to go out on better days and know that I have time, days or weeks if necessary, to recover from the “non-medical” outing — such a lovely thought.

When I feel “the tides of chronic illness life” washing over me, as they no doubt will from time to time, I’m going to think about that green, tall tree standing upright as the tide creeps in around it.

I’m going to remember there are things I can control and have changed.

I might get my feet wet, but I won’t get swamped.

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Getty Images photo via Foxys_forest_manufacture

Originally published: January 23, 2018
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