Control over our lives? We have no control. Or do we?

It’s been a really rough couple of months and while I have sure spent my fair share of time wallowing, I’ve also managed a thought or two.  I’ve come to the conclusion that when you are chronically ill or in pain you lose a lot of control over your own life.  This presents itself in small ways in social situations where we are invited to something a week from today and we can’t really say yes.  Not because we don’t want to go.  We definitely do.  We can’t say “yes” because we don’t know what our body is going to do to us a week from today.  Honestly, we don’t really know what it’s going to do 45 seconds from now.  It’s like we are subject to the change of invisible winds and try as we might to do everything right, one shift in direction of those winds and the whole house of cards we so carefully assembled comes crumbling down.

Man, I did it just right, why????

Man, I did it just right, why????

Of course that is the little stuff.  Many of us struggle with household chores. I know I’m not alone in just skipping dinner because I simply didn’t have it in me to make it or even pour myself a bowl of cereal.  Most of us can’t work, we did when we were healthy, but it was one of our many losses.  So we feel like we have no value in this world.  We often have to stare at our dirty houses, that drives us insane, because we can’t do anything about it. We struggle with terrible guilt of being a burden on others.  We try to explain this life to the ones around us, the loss, grief, depression, loss of self, loss of control and so much more, but people can’t really wrap their heads around it.  They aren’t being mean, it’s just so far from their experience that it’s hard to relate.  In most cases people get sick of your limitations and move on with their lives.

Although our houses do NOT look like this. It feels like they do in how overwhelming the smallest task feels.

Although our houses do NOT look like this. It feels like they do in how overwhelming the smallest task feels.

None of this is in our control, their isn’t a single thing we can say or do “right” to change any unwanted outcomes.  If we had control over our illness and pain then we wouldn’t be in this position and we could go live a normal life.  No counting spoons, pouring pills, waking in pain, making daily choices between things normal people don’t even think about like a having breakfast or doing your hair.  We live our lives walking on a balancing beam, always trying to make sure that you have enough meds in your system that your pain isn’t of control, but not so much you can’t think. You only commit to things you absolutely need, which is pretty much doctors appointments and on those days you do nothing else.  You carefully space out basic care like showers from any other activity because one shower can put you down for a day or more.  Still, sometimes, many times, it doesn’t matter a bit if you did absolutely everything right.  Our body is in control, not us.

Something else is pulling the strings and it has a strange sense of humor.

Something else is pulling the strings and it has a strange sense of humor.

So, what do we have control over?  It feels like we control nothing, like we are just being dragged along on some demented version Mr. Toad’s Wild Ride and it is different than fun. I actually had to think for quite some time for something that was completely within our control and I was  surprisingly victorious.  The way I figure it, the only thing that we truly control is our reaction to all of this.  Everyone just hold back that groan a second.  You should know me at least a little by now.  I’m not here to tell you that a positive attitude will change everything.  That’s a load of crap and I’m not in the habit of pedaling lies.

I'd make a terrible politician, I'm entirely too straight forward.

I’d make a terrible politician, I’m entirely too straight forward.

What I mean by you being in control of your reaction is that as far as I can tell, that’s the one thing we can actually own.  Mind you I am not discounting all of the mental, emotional, and psychological impacts of chronic illness.  We fight grief, depression, and in many cases suicidal thoughts and actions.  So, even here, there is a fight, a really big one.  I’m not discounting it at all.  However, in the midst of all my depression, with multiple situations and issues swirling through my mind, I kept asking myself, “Yeah, but what can I do about it.”  At first it was a helpless, useless question where I had no power.  Interestingly, over time I actually started probing for an answer.

Maybe there was an actual answer.

Maybe there was an actual answer.

I came to the conclusion that I had control over my response.  Even though I face these problems with the depression, grief, anger and so much else always going on in my head.  It would be like a healthy person trying to take on major problems after the worst week of their lives.  It’s going to be a little more complicated.  I think the trick is to take your time, wait until you’re calm, and then work your way through it.  Lately I’ve been struggling with severe depression, that trial was just the last straw.  So for weeks I’ve been asking myself “What can I do?” at first helplessly and then seriously.


I have been doing the same things and getting the same results and I’m not happy with them.  I’m not less of a person because I got sick and I don’t deserve to be treated that way and neither do any of you.  However, I have tolerated being treated as such. I can’t keep doing the same things and expecting different results, that is the definition of insanity.   I’m going to move slowly and carefully so can do my best to avoid mistakes, but I’m going to suss out what I want my life to look like and then figure out the steps I need to take to make those changes happen.  I’m controlling my reaction, I’m making choices that will over time change my life, in small, but I think significant ways, this won’t change my health status.  I plan to do it slowly so I don’t feel any pressure and I can celebrate the tiniest of victories.


I’m still terribly sick, had the same cold since early September.  I’m almost done with my second round of antibiotics and don’t feel that much better.  Sure, I’m miserable, my body hurts, nothing is working right, and I can’t keep my eyes open most of the time, but I’m absolutely in love with a mug I just got, it’s just the right size, shape, and color. It’s awesome!  Each morning I look forward to hot tea on my sore throat, in my new mug all wrapped up in my blanket and every morning for the briefest of moments, this makes me happy.   I think a big part of taking back control is just making choices, even small ones and realizing that they are yours.  I want to make more choices and be mindful of my reactions so that I can find joy, even in the dark.

It's a new path, I'll give it a go.

It’s a new path, I’ll give it a go.


About leitis23

I'm an adventure, living life to the fullest, and doing stupid things enthusiast, whose life took a serious left turn into chronic invisible illness. My saga of adventures in the world and in medicine never fail to keep life interesting.
This entry was posted in anger, anxiety, caring, chronic fatigue syndrome, Chronic Illness, Chronic Pain, compassion, conditions and diseases, coping, depression, disability, fear, fibromyalgia, hope, lupus, Mystery Illness, pain management, rheumatoid arthitis, suicide and tagged , , , , , . Bookmark the permalink.

12 Responses to Control over our lives? We have no control. Or do we?

  1. Michael says:

    I love this one sis! It applies to so many things in all our lives. 🙂 love you.

  2. Sherry says:

    I have just begun reading your posts. I was delighted to somehow receive one and hope to continue to read your delightful and sad and angry and puzzled writing. I too have suffered chronic pain and nearly everything you have written about for over 22 years. I can’t even believe it has been that long. One of the sad things I have experienced is that you become so focused and self involved dealing with the pain and depression that you lose a since of time and connected-ness. So happy for you that you have found that one true thing, writing, to bring you and others some joy, laughter, tears and a sense of belonging. Thank you and keep up the good work.

    • leitis23 says:

      Thank you for reading I’m glad you have enjoyed it. I am all over the place but that’s true to our situation. I absolutely agree that the hardest part is the feeling of isolation. You are right, that is why I write, so we don’t have to go through this alone. Thank you for reading and always feel free to share.

  3. Electra says:

    Lol, yup! Picking which cup is my favorite today and getting a big kick out of it is one of my favorite things to do, different cups for different beverages, it changes, sometimes day to day. And let’s just say that it’s really good I have very minimal BO cause those showers are really few and far between… Snerk, that’s my version of possitive thinking!

    • leitis23 says:

      It’s the little things that we control and that we can take our opportunities to find a little joy. I’m also in the process of thinking about who I spend my time and energy on and why and how I want that to change. I’m so with you on the shower thing. I delay and procrastinate then avoid make excuses avoid some more. They just kill me, I’m so exhausted afterwards, everything hurts, and it takes my body temperature hours to even out. No dinner we avoid them. Baby wipes are a handy trick, my hair is long so I just braid it, and just lucky I’m not the smelly type. I don’t think, I would hope someone would tell me.

  4. John Spinola says:

    Please allow me to help any way I can.


  5. Natalie says:

    Really great words. Thank you.

  6. Joe Accordino says:

    You are really good.I have 63 surgeries in 17 years and sick everyday and never seen it written so well….Joe

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