The unpredictability and downturns of chronic illness

I admit this is a bit of an issue for me. I find a lot of comfort in stability. From making long term goals. Progression towards improvement. Then Bam a downturn in health knocks me back. I don’t take it well. I am not taking it well. This one is a particularly rough ride though, but still my track record for downturns in health hasn’t been epically great.

unpredictablity of chronic illness

There is immense frustration from the unpredictability in chronic illness:

  1. How do I have any income stability? When at any moment my health could take a turn for the worse and I have to go on a leave from work? Or go to part-time, like I have. 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.
  2. Lack of control. You want to have some semblance of control over your health. Make progress. Find some semblance of balance. But it is 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 on appointments with specialists. We have no idea if new treatments will work at all. If things we stay worse or not. No control over what a doctor will say or do. What an insurance company will say or do. It is chaotic.
  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.
  4. How do we establish long term goals? When we can never establish any sort of long-term balance?

I don’t have an easy answer for #1 because it is something we all struggle with. Our financial health and whether we can even work is a constant battle. And many of us find we can no longer be reliable employees. I wonder if I ever have been I have struggled so hard to work and had so many leaves for various reasons. And we eventually question whether we just can work at all. That is something each of us has to decide. It is 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 is a choice we are forced to choose at some 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 while housebound with these vestibular symptoms. How I am trying to cope and 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.

  1. We know to rest more for recovery.
  2. We know to boost our mood with all the things we find mood boosting. I know the lack of functionality has made me sad lately and I have been trying to get out of that funk in the ways that work for me. (self-care when you are in a funk). We know there are things that help bolster our mood.
  3. We know to distract ourselves with any small thing we are capable of and we enjoy. For me right now I am working on pins for Pinterest for my blog. It is easy, my brain fog doesn’t get in the way (I just have to fix the mistakes I keep making), I don’t need much reading which has been an issue. I can go as slow as I want. And it distracts me. But we all have our distractions: hobbies, reading, Netflix, video games, knitting… what have you.
  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 bit isolated right now.

And I also think that we need:

Patience: It is 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 not all of our life we can control and we have to have a lot of patience for that which we cannot control.

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.

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.

Change is neither good nor bad. 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 life. 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 are on a different path with different challenges and obstacles that many people will not 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 our future. Nor these sudden downturns in our health that disrupt our life. I am definitely working on my coping right now. Focusing hard on that right now. A lot of self-care. And I know next time I am 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.

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