Downturns with Chronic illness

Downturns when you have a chronic illness can wreck havoc on our lives. I find a lot of comfort in stability. Everyone does, I would assume. From making long-term goals and progression towards improvement. Then BAM a downturn in health knocks me back. I don’t take it well. My track record for downturns in health hasn’t been epically great. Bit of a roller-coaster ride.

Some downturns are simply due to comorbid conditions and worsening health and we cannot predict it. Sometimes I blame them on stress and depression. Other times the complications of more than one chronic illness.

Other times downturns are from burnout. Working when I shouldn’t or working way over my limits for too long. Then I burnout. And keep working. Then things get seriously bad health-wise. That is a mistake I have made many times in the desire to hold onto my career.

There is immense frustration from the unpredictability in chronic illness:

1. How do we have any income stability? When at any moment our health could take a turn for the worse and we have to go on a leave from work? Or go to part-time, as I have personally before. Or some people have to make the choice to not work. How can I be a reliable employee when I cannot predict my health? It just does its own thing and I have no control over it. Then there can be times, such as with me, when we end up on disability which cannot be predicted.
2. Lack of control. You want to have some semblance of control over your health. Make progress. Find some semblance of balance. But it’s an illusion that falls apart as soon as things get worse for no predictable reason. And when that happens we find out we have no control at all. We have to wait for appointments with specialists. We have no idea if new treatments will work at all. If things stay worse or not. No control over what a doctor will say or do. What an insurance company will say or do. It’s chaotic. Or waiting for specialist that can take a year or more.
3. Emotional. It can bring up frustration, anger, sadness. We have to establish some level of coping all over again. Or wait out the rough patch. We can develop depression and/or anxiety.
4. How do we establish long-term goals? When we can never establish any sort of long-term balance? When we want to establish goals. When we have desires and aims and long term goals in mind. But then they come crashing down around us.

What are the answers

I don’t have an easy answer. Our financial health and whether we can even work is a constant battle. One we have to make the hard decision on ourselves based on on our lives. And our health. Many of us find we can no longer be reliable employees.

I wonder if I ever have been as I have struggled so hard to work and had so many leaves for various reasons. We eventually question whether we can work at all. In any field, in any capacity. That is something each of us has to decide. It’s part and parcel with the unpredictable nature of chronic illness. If we cannot work, we suffer financially but at least we have attained stability of that income and in many ways reduce the suffering work can cause. But that isn’t an answer any of us want. It’s a choice we are forced to choose if we reach that point.

But for the others, the lack of control, the emotional flux and our desire to have long-term goals. And just how do we even deal with unpredictability. I have thought about it a lot when housebound with vestibular symptoms that happened to me in November 2017 and just didn’t stop. And then the downturn that happened during my vestibular rehabilitation itself that caused my mobility to be compromised. How I was trying to cope and while feeling all of this? And I realized I know how to deal with this. I knew all along. We have the coping strategies in place for coping with unpredictable downturns in our health.

One thing I understand deeply is that control over our lives is a figment of our imaginations. We thrive with the feeling of control. Our brains love that feeling.

Because emotions drive all we do and our rational mind is simply a guiding factor in our lives we have far less control over this story than we think. When you combine outside factors and the random arrows of fate and then the roller coaster ride of our poor health? We have no control. Or little anyway. That is frightening to acknowledge. However, our power isn’t in control, it’s in reacting to the winds of change. To endurance and perseverance. Choosing what to do when things change for the worse.

Things we know

1. We know to rest more for recovery.
2. We know to boost our mood with all the things we find mood-boosting. We try to get out of our mental funks any way that we can. We know there are things that help bolster our mood. Again, the show is run by emotions, so we have to feel what we feel and show some self-compassion for it.
3. We know to distract ourselves with any small thing we are capable of and we enjoy. We all have our distractions: hobbies, reading, Netflix, video games, movies or whatever we are into.
4. We know we can’t get too isolated so we need to get outside for a walk or out and about for a bit once in a while. This is really difficult for me right now, so I’m a bit isolated right now. However, I have taken baby steps to socialize in shorter durations and it has helped immensely.

And I also think that we need:

Patience: It’s frustrating and we want to feel improvement right away. We need to be patient. Follow the system. We know the system. Do what is needed. Wait. Be patient. We have to understand that not all of our lives we can control and we have to have a lot of patience for that which we cannot control. We control our reactions. We control how we deal with change.

Change happens: We need to understand illness is inherently unpredictable. These storms will come. And we won’t see them coming. But when they come we handle them with all the skills we have to handle our chronic illness at its worst. Accept it has an impact on our lives. Accept we need to cope with it. If we find acceptance in this, it is possible we can avoid the emotional fallout that comes when a downturn happens. But, I haven’t avoided the emotional fallout this time, and perhaps that is because it Does affect our lives. So we have to reassess our coping. Do the self-care. Do the mental and emotional work that comes with it. Go from there.

The journey matters: I don’t think we should stop making long-term plans, goals and have ambitions about our future. I think we should live our lives. Our path may have obstacles on it but it is a path worthy of travel so we shouldn’t stop walking it for fear of obstacles and challenges on the way. That isn’t to say we are not impacted. That we cannot become disabled, for example, and not be able to work. And may never be able to again. We cannot know that. But maybe we will be able to as well. All we can do is focus on our short-term goals to improve our health and our long-term goals we wish to attain slower, bit by bit.

Change is neither good nor bad. Okay, yeah, it sucks balls. I hate it. No one likes it. But it just is. Illness is unpredictable but we see positive changes as well sometimes, spontaneously or from a new treatment. Change isn’t a negative thing. But, yes, we do have unpredictable health and it can lead to downturns that impact our lives. We have to ride that wave of change and take care as much as we can at that time. Our journey in this life is different than the average person. Just different. We’re on a different path with different challenges and obstacles that many people won’t understand. Still, live your life and make your plans but account for the fact that we have to ride out storms sometimes that are just part of this journey.

One thing I know is that none of it is easy. This overall unpredictability in the future. Nor these sudden downturns in our health that disrupt our lives. I know I can feel so burned out from a downturn. I am definitely working on my coping right now. Focusing hard on that right now. A lot of self-care and working on my mood. And I know next time I’m equally prepared for a downturn in my health. And I know I cannot fear such things in the long run because we cannot predict them. We have to move ever forward in our progress and treatment.

Chronic illness and perception of control