Chronic illness rebuilding and remaking ourselves

Reflection: eternal return of the same

The thing about chronic illness is that it is unpredictable. We can go from managing, coping, and modestly function to… not. And after these rough bouts, for me, which always causes financial instability and leaves from work and seeking treatments. Well, you are constantly starting over. Constantly remaking yourself. The eternal return of the same. Doing the same thing and getting the same result.

Reflection: Eternal return of the same

I don’t even think I can recall all the times I was modestly functioning, or not functioning and pushing myself, where I thought things would get better… only to have them crash and burn.

I know every time I am working I save for retirement and emergencies… and then when I crash health wise I end up having to use it, so I never get ahead of the game. Because after that… I have used credit and so debt is high, savings gone, and then I get help from family, thankfully, just to make it by. And you feel stripped bare of your life. Trying to find ways to deal with the financial insecurity and trying to find ways to make yourself feel like you have some sort of worth and productivity as you struggle to just deal with the pain and illness.

And then I would return to work, often against doctors orders, because insurance companies… well they don’t aim to pay long term. And it would work for a bit. But you can’t exceed your limits all the time without consequences. So then get sicker and sicker until things all fall apart again.

And you are angry, frustrated, depressed. At this cycle of crash and burn, and then pushing through, and crashing again. But I partly blame myself. My own denial of my limits making me push through and exceed them all the time. Thinking for some dumbass reason it wouldn’t go down like the time before. If I just Pushed hard enough… but pain pushes back… hard. It was denial because I wanted a career. I wanted financial stability. I mean, who doesn’t?

And then I went down to part-time. My doc didn’t want me working at all. Nor the last three psychologists I have seen. But without insurance, you have no choice. And my employer knew I was unreliable and undependable and not functioning… so they put me part-time in another role. And even that is a strain on the income. Even that is a strain on my health. And even that failed when I got worse again and missed to much work and then this damn infernal vertigo was triggered.

It is constantly failing to thrive. Because I ignore pacing. I Boom, when I push through, I Bust when I crash and burn. The biggest mistake I have made over the years is not understanding limits are there for a reason. And ignoring them has a high cost. But being unable to function as society expects, also has a cost. And we have to constantly adjust.

Re-build

So we have to re-build but we don’t have to keep doing the same thing with the same result. We have to look at our past experiences and make hard choices. Do we have to go down to part-time, flex work, or remote work or have specific accommodations? Or can we not work at all? No matter which it is, it comes with income being affected. Which means we have to reconsider our budget while at the same time managing debt. The hardest thing I did was go to part-time or on long term leave… two full-time incomes to one full-time income and just a wee bit on my side, when we had the debt of two full-time people… that hurt the pocketbook. So you reduce bills in whatever way you can. You cut out a lot of things like going out for dinner. And you try to find ways to manage the debt that is too high for your current income. And hopefully, once you manage to get by on the lesser income… you can save for the future. Anyway, you have to figure out your financial health because money is a Massive stressor. And I don’t know if I will ever be able to work full-time again… so I need to exist on a tight budget.

By the way, when you can creditor insurance is always a good idea. Sometimes we cannot get it due to our specific health conditions. Like on my mortgage can’t get disability insurance because I have fibromyalgia. But it certainly helped that I have it on other products. I tell healthy people the same thing… because illness and injury are never predictable… they just hit us and we still have bills to pay.

And sometimes we need help sorting all this out. And that is fine. I mean, I waited a whole year to get on short-term. And I wouldn’t have survived without my mom helping with bills. And then later using medical EI to get by (which now that I am on long-term I have to pay back… but it got me through at the time and that is all that matters).

But it will never be the way you want it to be, it seems. When it becomes impossible to hold onto a career it hurts in many ways.

Re-make

So when you lose work you lose a bit of our self-identity, sense of self, self-esteem and self-worth. It hurts a lot. And we feel like a failure.

And that means a lot of introspection and thought and re-assessment on our side in order to gain back a sense of self that doesn’t include working. We are, after all, more than our work selves. But finding out who we can be without it can be a bit tricky. And I have always found hobbies to help get me through, when I have the energy to do them. As they are a pain distraction, keep me occupied, and help make me feel a little productive when I can do so little. So things like that do help fill the void.

But each time we fall we re-make ourselves because of our resiliency. Which is a good thing to know; that who we are is fluid and changes with time. And you know we learn a lot about ourselves just from the coping process. And I can’t imagine having survived this long if I hadn’t picked up those coping strategies. And enduring the pain and coping with the pain has changed who I am in many ways. Some in good ways. Some in bad ways. But changed nevertheless. And when we need to remake who we think we are we have to acknowledge that we will change. Some ways will be good. And some will be bad.

It is a constant state of Becoming. We are not set in stone. Life changes can hurt and we do grieve for them because we wouldn’t have done those things we did if we didn’t want to. But life has its own plans. And we have to adjust to the flux of life and illness. Embracing the things we can do and not thinking about that which we cannot. Embracing new paths that open up. New activities. New hobbies. New ways of being in the world. New things that help our wellbeing. All while knowing intrinsically the future is unknown, unpredictable, and change happens.

We are not failing at life. We are constantly adjusting to a permanent stressor and that means limits. When we ignore those limits, well our health punches us in the face for it. We just have to accept sometimes that staying in those limits will vastly help our wellbeing. And know that we are never stagnant and always Becoming something more.

Things will get better. Things will get worse.

Both of those are true for us. We may improve in coping and resiliency but get worse physically. We may get better physically but our mood suffers. And we are constantly not balanced. We are just constantly seeking that balance. That maintenance mode where we can have this ideal balance between our illness our lives and our wellbeing. It doesn’t exist though. Balance is brief. Transitory. What matters is how we walk through the fire. And there is always fire.

And I ask myself always am I becoming better than yesterday in some way or bitter about what I couldn’t do or be? And I ask myself so I do not dwell on all that which I couldn’t do. And instead, focus on the present. And what I can do now that will improve my wellbeing. If that means resting all day through a flare, so be it. We all have recovery days. If that means a new treatment that might improve my quality of life… I am game, man. And if that means distracting myself from the pain, I will do it. If I can’t distract from the pain then rest and self-care are vital. I’m riding the constant flux of chronic illness. Sometimes the waves crush me and sometimes I hit them and ride on. Sometimes I float. Sometimes I am drowning and I need to figure out how to get back on that damn boat. Sometimes I am swimming with the current and doing well with coping and sometimes I swim against the current trying to do things I cannot.

There is nothing wrong with us when we cope poorly. Or exceed our limits and crash and burn. Or when wellbeing suffers. It happens to us all. Coping is a process and it never ends. Sometimes we just have no energy to try. But we will again. We will. Because we are resilient.

I am doing poorly now so it is a struggle. But it is always a process. Nothing stays the same. All I know, for sure, is my own denial of my limits rebounded on me hard. And I learned, slowly, because I wanted to push through, that I was truly and profoundly hurting myself by that boom and bust cycle of pain. And eventually, you have to just let Go of dreams and ambitions that are impossible to find what is possible for our lives as they are. We can’t punish ourselves forever about something we have no control over. And I really did. You push, it pushes back. And I’d push harder, and crash way harder. Those limits, man, are like a brick wall. You can’t bash your head through it. It hurts you more than anything else. So we rebuild. We remake. We continue on riding this wave of unpredictability and try to just live some sort of life with the limits we have. And that life isn’t less worthy. It is the life we have.

See more:

Boom and Bust cycle

Chronic illness and the art of pacing

Tips for pacing
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12 comments

  1. I relate. I dont have financial worries now because of husband but I constantly worry that may end, and now I have no real way to earn.
    But starting over health wise and mentally wise, as I’m doing now. I still relate. It’s hard. It’s real.

    Liked by 1 person

  2. Extremely well written. Hard truths; you push, it pushes you back. Harder. The uncertainty because sometimes it just pushes you down to the ground and you never threw a punch. Financially, I think the majority of us are maxing out credit cards. Try to live on disability… after you’ve worked full time? Disability is not a livable wage. But we will get through. We will secede with in our limitations. Until we have a firm grasp on what those are, we just keep hurting ourselves. Feel better. ~k.

    Liked by 1 person

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