Hey, how’s it going?

It’s all good.

No, no it isn’t all good, man.

Not at all.

Chronic illness: Everything is Not awesome
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Everything is Not Awesome

We deal with a bit of a suckfest healthwise. Add the stresses of everyday life in there and, well, wee bit sucky.

Right now I think most people would agree everything is Not awesome. Everything is insanely stressful for everyone. And with a chronic illness, we know that. We live there. We live immersed in stress. This pandemic of COVID19 has just enhanced our stress and the stress of the world. And increased our risk factors for illness. But this isn’t a post about the pandemic… I feel I need to write about something else today… to distance myself from it right now.

Our health is unpredictable. We can take sudden downturns. When that happens we can lose our jobs and careers. We always face that potential job insecurity. We face the possibility of permanent disability and financial instability. Money stress often means relationship stresses.

Dealing with symptoms, like fatigue and pain and others, can be severely limiting to our daily functionality. From barely functioning but doing it to not functioning and unable to work or do much at all. And coping with those symptoms is a constant effort. Sometimes we suck at coping. Sometimes we rock it. But it is continuous.

And often we deal with comorbid mental illness concerns like anxiety and depression that complicate our other health issues.

None of this is awesome.

It is okay to not be okay

It is okay to not be okay

Knowing the suckfest of chronic pain and chronic illness it is okay to not be okay sometimes. To rant a bit. To complain a bit. To have a pity party. Take a mental illness day. Do a self-care day. We need to mentally and emotionally reset sometimes. It is just the way it is. Not every day is going to be a good day mentally and emotionally. Not every day is going to be the best coping day.

Some days are severe symptom days or bad pain days or severe low functionality days… and we are Laid Out. That is completely out of our control. Some times in our lives these days are more frequent than we would like for way too long. Extended durations of just low functionality. We are not to blame. We cannot feel guilty. This is the unpredictability of chronic illness.

I recommend journaling to work through things.

I found this wicked one to guide you:

Let that shit go (Zen as F*ck journals)

And this one

Zen as F*ck: A Journal for Practicing the Mindful Art of Not Giving a Sh*t (Zen as F*ck Journals)

My post about unpredictability and downturns: The unpredictability and downturns of chronic illness

Chronic illness: Everything is not awesome

However, the point of life, any life at all, isn’t that it is ALL good, is it?

I know we cope with more than our share of suffering. Way more. Way more than our share of stress. Way more. And that isn’t awesome at all. However, we do not own suffering. People suffer in ways we often do not know. It isn’t about who has the most craptastic life. I don’t think I’d want to win that game. So it isn’t all good… but that isn’t the point.

I just don’t think the point of life is for it to be awesome sauce all the time. It isn’t for anyone. It never will be.

We get lost in these thoughts of:

  1. I would have a better life if I never got sick
  2. I could Be so much more if I were not sick
  3. I envy those who are not sick because of what they can do that I cannot
  4. I am severely limited in my possibilities in life
  5. I can’t be the person I want to be

And it is true… life would be different if we never had a chronic illness. But it wouldn’t be perfect. And we would have problems, just different ones. We have no idea who we would be or what would have happened and focusing on what-ifs will drive you nuts. And comparing yourself to your past healthy self or some healthy person is unfair to your current existing self. Yes, that current existing self has limitations and that means possibilities are limited. You may not be able to be the person You Thought you should be. But you can be the person you want to be within your existing limits.

Not all possibilities are eliminated. We are limited… not completely excluded from living a life.

Even for melife had itsgleamsofsunshine

The point is that some of this life we have IS good.

I’m not going to blow sunshine up your butt. I’m not going to shove motivational quotes down your throat and tell you to ‘think positive’. Because even I would gag if I did that.

I’m just going to say that even for me, life has its gleams of sunshine. And I look for them. I do things that bring me joy… things I am capable of doing. I find small joys where I can. I take my small pleasures where I find them.

I don’t think this is a wasted life. I know I can’t do the things I want. I know I am tired a lot. I need to rest a lot. That I can’t function well anymore. That I deal with a lot of pain which limits me as much as this vertigo and dizziness does.

When I first went on disability I didn’t value the things I could do (writing, blogging, anything) in the same way I valued work. And I find that odd because trust me, while I valued my work… the company I worked for as a whole- I was just number to be productive and do their job and if I died they would have put up a want ad the next day. To them, I was no different than anyone else. Well, I was a bit of a problem as anyone with a chronic illness is to an employer. But that is about it. I valued my work. But work didn’t value all of who I am as a person. I am sure my co-workers valued me as a person, those who worked with me a while a knew me, but people move on. Life moves on. And we have to in some fashion or another as well when we lose our job or career.

The main part of that is not focusing on Happiness per se but rather Life Satisfaction.

Mood, happiness and life satisfaction

How I started that process

  • One aspect of that is valuing the things I can do as things of worth.
  • Another is letting close friendships flourish and grow.
  • Another is looking at the story I tell about myself a little more realistically than ‘this person who is disabled’ and as something more complete than that.
  • One is setting goals that I can achieve for myself
  • And the final one is always growing- learning- changing. Not letting this concept of being at home meaning I am stagnant and not having a life.

And in that way, I inched up my life satisfaction with the life I Have. Not this fictional life I Don’t have and will never have.

Other things are doing things like working on a gratitude journal because focusing on what we are thankful for helps ground us.

Allowing ourselves to have a life

Granted, we have limitations and we cannot do a lot of the things we want to. I would love to go to a concert… but my migraine disease doesn’t like that idea at all. But there are things I can do within my limits. I call it living within the pain gaps- it isn’t really- it is living in the lower pain density area and doing things in a more mellow sort of way. Choosing activities that are more mellow and are not going to aggravate me and doing them on days when I am not in severe pain… but lower or moderate pain instead. And maybe not for a long duration either. But a little bit goes a long way. Yes, I am talking about interaction with the World. With family and friends. And being out and about. (Clearly, not at the moment I am writing this post where we are all self-isolating due to the Covid19 pandemic but when it is over and prior to it).

And allowing ourselves to find some happiness in the things we can do. Value those things.

I’m not going to say chronic illness and chronic pain are going to be any less difficult to cope with. Or that life is suddenly going to be awesome…. it isn’t. I’m saying find your gleams of sunshine where and when you can. We deserve that, don’t we? We deserve some contentment with some semblance of a life. Some life satisfaction. And we have to know there are more ways to be in the world than the healthy and the workaholic and the overly ambitious. A mellow, quiet life, is a life.

I don’t know if life has any deep meaning. Sometimes I think it is meaningless and human beings create meaning to make sense of it all. All I know is I want to be happy with the person I am. I want to be able to do things and find value in what I do. I want to stay connected with the world (self-isolated right now during the pandemic, of course, but connected online at the moment).

I am quite unwell lately and my usable hours are quite small- the time I have in the day to do anything is shrinking. And I think that just means I have to cherish the time in the day I have where I can do things. And find the pleasure I can in what I can do. Or I’ll go completely nutters.

See more

Chronic pain: the pain story

The story we tell ourselves

Chronic illness: limits and life

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9 thoughts on “Chronic illness: Everything is not awesome

  1. Trying to cope with chronic pain, and enjoy ones existence becomes a juggling act. The anticipation of ones next unbearable episode of pain, weighs heavily on the mind. The Term; “Unless you’ve walked a mile in my shoes”, does apply here. Because, we can be judged by those around us for their own inability to see our pain. And, when the balls come crashing down onto the floor, we alone…are stuck to pick them up…

    Liked by 1 person

    1. Chronic pain is a relentless beast. I think people do not comprehend the fact of how horrific it is when pain never, ever ends. Coping with that is never an easy thing. Sometimes we do it well. Sometimes not. Sometimes I suck at it… for years. And I think that is normal because it sucks. Just because we learn all the ways to cope doesn’t make this game any easier to actually Live.

      I think the one thing that helps me cope with this life better than anything is when I was forced on disability (because of other health issues). Because coping with the pain aggravated by work was Too Much to handle with no ability to recover ever. One doesn’t sleep even. And that makes it worse. And then it is an endless desperate cycle of hell. I did pain management… but didn’t help… when I went to part time some mild relief. But when I became fully disabled… then I could breathe a bit. I could pace. I could rest. I could do those things they tell you to do that I couldn’t do while working. And yeah, I cope much better.

      It is not something people understand. That we cab bear the unbearable like that.

      Liked by 1 person

      1. Hi Nikki, I appreciate your reply…it’s so true! As, I am writing this to you…I have a H-Wave Machine whose electric pulses are running through the left side of my face, for nerve pain. Pain Mngt. is becoming a full-time job!
        I empathize with your situation, and I am sorry! Chronic Pain; whether it be physical or mental is a thief, and no human being should have to constantly endure its sufferings, I’m glad you can now get a break to breathe, and to take care of yourself. I know exactly what you mean.
        Not too long ago, I had someone I know say to
        me that she hopes the Chiropractor helps! And, I’m just thinking that she has no clue to my suffering, and the severity of it. Anyhow, I do find myself becoming bitter.
        I hope that you find relief in your day! Take care!!! Rosemarie

        Liked by 1 person

      2. People I don’t think, can understand it. Not really. or all the things we have to do just to cope with it. Wishing you better pain days… and myself as well!

        Liked by 1 person

  2. This is spot on! I work in a hospital and have to stay at home right now because of what treatment I’m on, trying not to beat myself up and thinking I’m useless for being unable to help! Hope you’re keeping well

    Liked by 1 person

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