Chronic illness: The battle. The quest.

So there is a common metaphor with chronic pain and that is we are ‘fighters’ fighting a battle or war, that never comes with victory just small bits of round covered in the war, and then falling back.

I don’t mind this metaphor because sometimes it feels like a am battling the day and dragging my body along with me. And this is going to be a rambling post because I am dizzy as all hell, but I have a point if you will follow me for a bit here.

However, when it comes to coping with chronic pain and acceptance it doesn’t get me far. It is like a moth battling a light source… constantly smacking into it. Or banging your head against a wall… you’re never going to get through. It is resistance to a force you cannot control. And it is trying to control a force that cannot be controlled. Like fighting the wind. You can swing all you want, but it is going to blow you down.

Chronic illness: The battle. The quest

Partly it is this notion of control

That we should be in control of our bodies. That our bodies are the enemy we need to battle against to be in the world the way we want to. Our bodies limit the ways we can be in the world. And this is a very dualistic idea. That we are separate from our bodies. When it is really more of the mind affects the body and the body affects the mind, all co-mingled together. One we don’t entirely understand. But we can see it with things like the placebo effect. There is an effect and it is physical but it is because the mind believes the medication will work, or won’t, or certain side effects will happen or they won’t. And there is evidence to suggest if you walk in with the idea or belief a med will be beneficial, it has a greater chance of working or working better. And we know it from such things as mental illness that has physical symptoms. The brain is running the show, sure, but the whole body and mind together are really what matters in the long run, because the brain is running the show. And perception with the brain means a whole damn lot.

There is a lot to show ‘thinking positive’ doesn’t do much… because our perception of our illness makes it seem unrealistic and false. But thinking negative can have consequences. Thinking realistically is a balance we all aim for. Maybe, dare I say it, hopeful? Just a wee bit of hope in there?

And that is where some metaphors come in handy

Like sometimes we have a mantra to get through like horrific levels of pain. I use ‘this too shall pass’ because it is like a wicked storm. It is brutal but it will blow over and leave me with my usual poor weather conditions. So I think of it eventually passing over.

I try not to fight against the pain, but just let the storm work its way through me. While I do all the things that keep me calmer and keep my mood better. But sometimes mood crashes with pain and I think this too shall pass. It is the pain. I am having a perfectly normal reaction to the pain. But the emotion doesn’t entail thoughts. When I tangle those emotions with thoughts… well I get majorly negative and depressed. And part of me untangling the two isn’t overt positivity… because, damn it, I am in a crapton of PAIN. No, it is recognizing when those negative thoughts crop up due to severe pain levels and emotional depth to it… they are often magnified by the pain. And I tell myself why they are not realistic. 

So what if we were to think that we are not battling our bodies, but working with our bodies? Coping with the storm in the ways we know help us get through? Flowing with the emotions but not ruminating on them?

Sounds a little nutty I know. But I’m not at war here. I am just trying to live my best life within the limitations I have.

A pill is never going to be enough

I am aware medication can make my existence a lot better. I have been taken off my tramadol, my trazodone, and reduced on the med for vertigo. And all of these have decreased my quality of life as I struggle with this incessant vertigo. So very aware medication is quite useful in helping with quality of life and definitely in functionality.

But I am equally aware with all that medication I still have symptoms, fatigue, pain, insomnia… it can’t eliminate it.

That leaves us in a bit of a spot, doesn’t it? This fact we have to live with pain and chronic illness despite treatment. And so we exercise. We meditate. We do alternative treatments. And vitamins. And we get a wee bit discouraged because nothing quite Does it. This is because we cannot ever have victory. That isn’t something we are going to ever get without a cure. And the idea we are fighting a battle suggests we should have our damn victory. But it isn’t ours to own. So hoping for it… this elusive remedy while pushing through doesn’t work. Because we push through and push through, often making ourselves worse, because of this idea that something is going to give us that victory. Victory is not ours. It will never be ours. And thinking about this idea that this battle will just cease isn’t realistic. But somewhere deep inside we think this battle will have an end game. And when it never comes we become hopeless. And depressed. And contemplate ending it ourselves because it will just never, ever, stop.

Or, we say to ourselves, Better. I aim for Better than yesterday, last year, a decade ago.  Something better. And better than before is better. That is more realistic. Knowing that all sorts of things combined can give us better quality of life, better coping, better strategies to get through the pain and its emotional consequences.

So don’t think of the battle. Don’t think of the fact victory isn’t ours to own. Don’t think of it as a war between what we want and what our body demands.

Think of it as what today can I do to maybe improve how I cope? That may improve my quality of life? That may reduce suffering, in some small way? That will move us forward in how we handle what remains with medical treatment. Trying new things that may help us in the long run. If it works, no matter what it is, then do it. If it improved your emotional, mental, or physical wellbeing… do that. Do much more of that.

So I can’t control my pain at the moment. Or the vertigo. And it has been a rough ride, man, a real rough ride. Limitations have magnified themselves so I can barely function for the majority of the day. And that is a real drag mentally and emotionally. And I have some control over that aspect. My thoughts. And how I respond to my emotional fluctuations, which are perfectly normal. And I brainstorm ways I  can boost myself mentally and emotionally because I know the consequences if I don’t. And that isn’t something I ever want to go through again. It is just down and down the rabbit hole. And there is my control… the things I can control, to some extent, to survive and cope with the turbulent weather of chronic illness. When we feel we have no control at all that is when that wee bit of hope for better vanishes in a cloud of despair.

If we are at war with ourselves, and in many ways, we are. Then we can be like chess players. We can be the strategist that thinks carefully about every move we make with ourselves to help us cope with something we cannot resolve. Just because the problem has no solution, doesn’t mean it can’t be improved upon. That we can’t find acceptance and a bit of peace with ourselves and limitations.

The factors:

  • What can I do in a duration of severe pain that can get me through the storm? What is your plan of action, your pain response plan, that can help you get through? It is different for everyone. And we all have some go-to plan we engage in. Like with a migraine it is darkness, quiet, ice, balms, and vitamins like magnesium and hydration… for me. And a different action plan for fibromyalgia.
  • What can I do to improve how I feel, in this moment?
  • What can I do to improve how I think, in this moment?
  • What gives me a sense of purpose, a sense of self, improves my self-identity or gives me a sense of productivity… within my current limitations?
  • How can I have more self-compassion for myself when I cannot function?
  • Go over with your doctor pain management and treatment, because the fact is without pain management quality of life suffers. And when that tanks it makes every single other thing that much more difficult.

There are no answers. It is more like a quest. And in the quest of aiming for better than yesterday is a fine quest to have. A quest has obstacles but we can make our way through them. A quest has purpose. Direction. And the journey of the quest improves us in some way. So engage in a quest with yourself to gain better quality of life, in all its facets. How much life can I shove into this chronic illness life to give me some joy, some pleasure, some greatness? I aim to find out. And the quest is always seeking out ways to better our Overall wellbeing and knowing we will have to cope with that we cannot change.

See other posts:

Chronic illness and self-identity

Chronic illness: Knowing the past is fearing the future

Chronic illness: The blame game
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8 comments

  1. I get that we need to busy our minds to reduce our pain levels and make a conscious choice as to what level of pain is tolerable. But. When I was allowed to be on the medications I needed for pain and the correct doses, I was in pretty good shape, mentally and physically. The medication decreases that we are forced to undergo are really decreasing our overall quality of life. It angers me. I am really mad. I don’t like pain nor do I like being in so much pain that my ability to get through a day is questionable. I appreciate your list of possible solutions and I will follow through, trying the ‘factors’ and seeing what helps. But I am still angry about losing the meds I need because someone else has improperly used it and has a drug problem. Sorry about the vent. I’ve been in a flare for four days…

    Liked by 2 people

    1. I think it is pretty reasonable about when they take away our capacity to function by taking away meds. Happened to me. And I am angry about it. Medication and treatment are Very important factors in our quality of life and capacity to cope. Without them everything becomes so much harder

      Liked by 2 people

      1. Well said, I agree. We need quality of life, that should be what a doctor is focused on, not the level of pain we are able to tolerate on a daily basis. Face it, we are in pain everyday and tolerate it but what are we able to do when we are not medicated for it? That’s what I find frustrating. This was a great post Nikki! Really got me thinking, AGAIN!

        Liked by 1 person

  2. Nikki, this post is amazing and really struck a chord with me………..that fact you did this so ill is quite amazing, you did great! I love your list of factors and will think about these on my bad days. Some days I just wonder…..how in the hell can so many people live like this?

    Liked by 1 person

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