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That was me... not my illness

Sometimes this is hard to distinguish but clearly when I am awesome that is me not my illness. It is hard for other people to distinguish because my awesomeness gets in the way of them seeing my illness. Like my awesome sense of humor. It is very hard for people to tell how much pain I am in when I am so goofy and have such an awesome sense of humor. It is hardly my fault I like to laugh and still find things to laugh about when I am in pain. I would say it is just the way it is but in fact it is a way I have tried to cultivate because I really prefer to laugh and be around people who make me laugh because I am in pain. It is an unintentional side effect of coping with chronic pain that helped grow and cultivate this sense of humor but one I like to continue to counter balance the fact that I also like to over think and over think... and think myself into places where laughter does not exist. I am told that is partly from lack of sleep, pain levels and pre-migraine states... that is bouts of depression. However it is also part of my nature. That is also me. But yes, the pain is my illness.

Here is the thing. I am going to get profound. Wait for it. We are born with, or shortly there after due to nature and nurture, develop something called a Personality. Some of us have more of it than others granted. Some of us have personalities that are so large they seem to fill a room... I call them Extroverts. While some of us don't want to be in the room... Introverts. And that is just one major facet we all know about personality. So we go through life reacting to situations based on this model of a personality we have developed... because it is our core strategy for how we deal with life's little adventures. Then comes along a huge, constant stressor called chronic illness. And guess what? This has an impact on personality. How can it not? And that is why we say things like 'Pain changes a person.' And 'Don't let your illness define you.' Because it has this impact and we all know it does not take very long for it to change us in many ways. And we automatically develop coping strategies based on our personality... just like we respond to any stress based on our personality but that does not mean these coping strategies are good ones, only that they make us feel safe. Good example is the Introversion/Extroversion. "Extroversion- Scorers high on extroversion tend to cope very well perhaps because they utilize a variety of coping strategies. Whereas someone on the low end of the extroversion spectrum is more inclined to retreat, avoid and self-blame." (How chronic pain can affect personality). I'm a real solid Introvert... real high on the Introversion (which by the way does not mean the same as shy... look up INTP personality type and you will find me.) Anyway, what I do when in a lot of pain, and certainly coping with illness in the beginning or when it is worse or in a lot of stress... retreat, retreat, retreat. And I love the self-blame. I try not to avoid because it leads to worry but it happens.

When looking at the "The Big Five Personality framework used in contemporary psychology looks at these traits: Openness (curious vs. cautious), Agreeableness (compassionate vs. unkind), Neuroticism (nervous vs. confident), Extroversion (energetic vs. reserved) and Consciousness (organized vs. careless). How we respond to stressors can depend on our personality type and if we look at the facets of the Big Five personality test it can show how different personality types react in different ways."(How chronic pain can affect personality).

"Neuroticism- High in this facet tend to be nervous, insecure and worry a lot whereas low scorers are more calm, relaxed and secure. High scorers tend not to cope well and therefore choose ineffective coping strategies. They engage in a lot of self blame, have difficulty with problem solving and practice more avoidance when stressed. It could be there higher level of emotional responses that hinder their ability to choose healthy coping strategies for the right situations." (How chronic pain can affect personality).

"Openness- Someone who scores low on openness might have difficulties finding effective coping strategies and are less inclined to try new methods.
When diagnosed with a chronic pain condition how someone reacts to that situation and begins the coping process depends on their existing personality. To some extent how they already habitually respond to stressors. The fact is if we use negative coping strategies and have problems with problem solving it could easily lead to hopelessness and depression. We may be inclined to avoid the problem, engage in wishful thinking, disengage and retreat, instead of actively engaging in the world using several coping strategies. An introvert may become extremely introverted for example because chronic pain causes you to decrease social activities and leisure activities as it is and an introvert may just further retreat. An extrovert would obviously try numerous coping strategies, but if they failed perhaps they would also be the first to feel isolated if they were unable to get the social contact they were used to. Therefore immediately we will see facets of our personality highlighted as we struggle to cope with a stressor that is continuous. These are the traits we use all the time to cope with everyday stress. It is never a problem, or sometimes it might be but never a major problem. When it comes to this sort of enduring stress it becomes a greater issue." (How chronic pain can affect personality).

Additionally we may develop comorbid conditions like depression, anxiety and panic disorders.

So our personality impacts how we react to our illness from the get go. And we change to cope with our illness. Some of our coping strategies are not effective and it can take us a very long time to adjust that. It can take us a long time to develop positive coping strategies and Those change us. All of these... eventually become parts of who we Are. Like my awesome sense of humor. Also I am a hermit and pretty well known for liking it.

Then there is the Illness. And that fine line between. I am very well known for being absent-minded and clumsy. Sort of worse now. However I have been this way for as long as I can remember. That is why they are traits people know me for. That is my illness... not me. But so ingrained that even I say it is me and joke about it. I have not known a me without those traits. Some things I am very adamant that are Not me, they are my illness. It isn't like me to be chatty... but migraines sometimes get me jittery, nervous, shaky and on edge and I cannot shut up and I loath it. Likewise when aphasia hits or fibrofog and I lose my words, cannot speak properly, cannot communicate write, use the wrong words, cannot write properly... I find this embarrassing and frustrating at work... more funny at home... but Not Me... the Migraine.

However, when I am creative that is me. But of course pain is very... inspiring of that there is no doubt. I love to write, to blog, to write fiction, non-fiction. And that has always been me. The fact I choose to write about my illness is partly due to advocacy, partly due to the benefit to me, partly a pain distraction and mostly because I love to write. Pain cannot take it from me... it can provide inspiration, but it is all me.

When I am brilliant and thoughtful and philosophical that is me... I know my IQ is the same, I have tested it again to just reassure myself there is no brain damage going on there but most definitely this brilliance is like the sun on a cloudy day peaking out occasionally. The pain, fatigue, migraine neurological issues and fibro fog compromise that brilliance dulling it to mere 'functionality in the face of necessity'. I'm far more brilliant flexibly. And on paper. And between migraines. Once I had a migraine free day last year and the Clarity was astounding... it was so productive that day I was amazed at what it felt like to not have that pre-migraine, migraine, after migraine day. Imagine what I could get done if had two such days a year. The possibilities are infinite. Anyway that is all me. The person who loved to think about thinking so much she major in Philosophy then took her Masters in it... that was all me. My illness might have prevented me continuing that academic path and that was a health compromise I chose but it is still a part of who I am. I will always be that person who bores people at parties talking about things I read, or a study I read or a philosopher I read... and I literally see their eyes glaze over and stop talking, until I find another Introvert who then I can likely get into a real chat with about something we are both intrigued about.

When I am goofy, dance funny because I want to even in public, make silly jokes and laugh with others that is me. It is a me that I let out to play when i was coping at a young age with chronic pain and fibromyalgia. When I was getting through my negative coping strategies and choosing to look at things a different way. I chose to give myself the permission to be happy in pain, permission to seek laughter when in pain and to seek out people that made me laugh, instead of people that made me depressed.

So when I am creative you can see me. When I write something profound I am there as well. When you hear me laugh there I am. And when i am awesome... I am also there. The illness is there too. I laugh when I am in pain. I write a story at times when a great deal of pain. I write articles in pain. The pain is there. Sometimes you can see it... when the laughter is gone, when the story has more typos than word and when my articles are delayed and when by blog posts are short, maybe ranty.

And yes I have been fundamentally changed on a personality level as I coped over time, but not all of that is bad and negative. We learn to cope. We learn to survive and over time we tweak those methods because we must constantly adapt our coping to our life. I don't think it a bad thing that we are changed by our illness... I think it is a necessary process that we are, we just have to seek the ways that are positive coping strategies and reduce the negative coping strategies. Take care of our mental and emotional health. Let the you shine through the illness when you can.
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The crowded me out of the brain. Making no room for anything else. Distraction was impossible. You feel almost frantic with the pain but must be still.

What do you do? To get through it when you have no distraction?

I ask me this as I am really in the depths of a 9 level frantic level of pain right now. Hoping maybe some writing will be a distraction, but it isn't. As I said, the pain crowds the brain. I have to focus real hard to write and my head isn't clear. Too much pain to focus well. Things become quite difficult to do. 

I will say this: We cannot function. We have to just cope with the pain.

But we are Immersed in the pain, we what do we do?
We can and should rest and get through it the best we can. Here are some of the things I do to get through it.

Relaxation breathing: I can't meditate when in high levels of pain. It just makes me think about how much pain I am in. Just not a good idea. But I do do relaxation breathing. I close my eyes. I focus on my breathing. I even…