Tuesday, May 14, 2013

Coping with Chronic Illness


I remember the day I was officially diagnosed with a Dysautonomia. My husband and I were overwhelmed with questions, information, and emotions. I was scribbling down notes and trying to remember everything. 

That was a much anticipated appointment. The specialist was about a 15 hour drive from home and a bit of a celebrity in the Dysautonomia world. We knew we had limited time to get the answers to questions we had been asking for over a year.

I found the notes from that appointment today. While flipping through them I remembered all the mixed emotions from that day. I was part worried he would say that I did in fact have Dysautonomia and part worried he’d say that I didn't. didn't want to have any type of illness, but it was inevitable that something was wrong and I figured it would be easier to have what this doctor in front of me specialized in than to have to start over somewhere else.

After some time looking through the notes I started to remember more specific thoughts during that conversation. Mostly about a small part of the three hour appointment when he spoke to us about some things I might feel after everything sunk in.


*Denial and Grief – Done. Felt that when the very first doc said “You should see a cardiologist as soon as possible.”

* Relief of a Diagnosis – Done. Hell I was down-right excited to have words for how I felt other than “I don’t feel good.”

* Empowered – Done. I was learning what exactly was happening to me and why. I was empowered that day.

* Depression – Skip. No need for that one, I have an awesome husband who is supportive and wonderful family and friends.

* Acceptance – Awesome. I am already becoming empowered; acceptance should be what, maybe a few weeks away.


Clearly I saw these things that I might feel as a check list that I could run through.

What I clearly had was no idea how coping with a chronic illness worked.


I would say most people assume that because I am open about having a chronic illness and do my best to bring awareness to Dysautonomia that I am empowered and accept it. I have actually had someone say “You seem to embrace it”. It felt like the time to shed light on what coping with chronic illness has been like for me thus far.

Denial
I was not as safe from it as I had previously thought. Apparently even when you know the information and have had almost all the tests done (still waiting on those cool Mayo Clinic tests) denial can work its way in.  I am in the process of three things that will hopefully improve my quality of life; a trip to the Mayo Clinic, a power wheelchair, and regular IV therapy.

I cannot convey how many times I have doubted myself while moving towards these things. Negative thoughts have caused me to put off moving forward with treatment options because I would think to myself that I can’t really need it that badly. Why in the world would someone second guess something to improve their quality of life, things their doctor has suggested? Because you're in denial.

Denial and I are picking up lunch at the Just Mildly Medicated Cafe
apparently you don't get to revise the menu ...



Relief of a Diagnosis
That part was very true. I was actually happy for weeks after that appointment. Not only was it not just in my head but I wasn't lazy or over dramatic. I had an answer, actual words I could say. “I am sorry guys, I can’t make the festival this year. It is too much walking around with Dysautonomia.” Instead of saying yes and worrying if I would get dizzy or feel sick and seem distant or annoyed.

Then all of a sudden the back lash hit. Now that I have a diagnosis I actually have something, and the something has no return policy. I was overwhelmed with the concept of being sick for real. Laziness is mind over matter… your Autonomic Nervous System is matter over mind. Even Bruce Banner couldn't control his heart rate. In all seriousness this realization was the beginning of the next stage.

Grief 
I became sick slowly over a span of a few years. I felt like I had time to adjust to my new normal instead of a sudden onset. For the most part that was true. I was prepared, if at all, to grieve about what I used to be able to do.  All of a sudden one day I realized I wouldn't go back to work the way I had assumed I would. 

That isn't to say I am not a functioning productive citizen because I am, but it wasn't going to be in the way I had assumed. I spent time grieving an idea, and that did lead to a bit of depression.

Depression 
Depression for me wasn't what I expected. It reared in an angrier version of sad, or a bitter unexpected manifesto of the two. I second guessed my life, my very happy life as a wife and mother of four. If I had made other choices maybe I wouldn't have triggered this slow progression that has now consumed so much. 

Empowerment
Empowerment did come through researching, writing, and connecting. Blogging as well as reading other blogs and getting to know others who have medical issues, those have been outlets to express and learn. It has given a value to going through all of this. I still don’t feel so warm and fuzzy about Dysautonomia.

Acceptance 
This one seems a foggy illusion. It's like the way you prep for a conversation and run it through your head only when the time comes no one says what you thought they would and you’d like to hit some kind of rewind to keep things on track better. I think acceptance can be a particularly hard one for me because others assume I am there. I mean how could I write about this nonstop if I don’t accept it? I think the answer is because I am in the hopes it helps me get there.

The biggest thing I’d want to share is that my original view, the check list version of the stages, it just isn't how it works. Acceptance isn't a location you arrive at and think ‘wow that was a long drive’.  It is normal to transition back and forth through these stages, sometimes quickly. I've had denial, acceptance, and more denial all over one specific thing in one day. You can assume you will be impacted in one way, like I did with grieving, and it actually happens in a way you never considered. It is a roller coaster.

How has your journey been different than you expected?

*These stages are from a conversation with one specialist where many other medical issues were covered. This is in no way meant to be the psychological guideline of dealing with an illness but more of a personal evaluation of my own experience.

** If you feel you have been in any stage for a period of time that is causing a negative impact on yourself or those around you seek out you physicians help. 

21 comments:

  1. I am so looking forward to a diagnosis. I don't even care what I have anymore - just as long as I can move forward with treating and coping - you know? Sigh. You, BTW, are doing an amazing job getting it all done and done with flair. :)

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    Replies
    1. The diagnostic process can feel so stagnate. I hope you find the right doctors very soon. Let me know if I can help in any way!

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  2. Always opening my eyes a little more with each post, and making them weep at the same time . . .

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  3. I LOVE that you had to put disclaimers at the bottom:) In all seriousness, these are the stages of loss and sometimes we don't expect to feel them and sometimes, when we think we are "over it", they come back at an unforseen moment. I have the visible knee brace, and I get irritated at the sympathetic looks and poor you comments when I go to the store...and they irritate me. My issue is temporary and I am already frustrated and ready to be done, I could not imagine if I had to do this forever....eye opening for me and I thought I was pretty empathetic of what you were going through (how much I did not even realize). Just means we need to go have a drink when you have a good day and we can make it happen. hugs to you neighbor!

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  4. I remember when I received my first diagnoses, I was so happy, because it said I wasn't crazy. Over the years, with many other things added on, I am still happier knowing what is wrong with me, then walking around questioning my own sanity.

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  5. I know I say this every time, but you are amazing. Your authenticity and honesty are so refreshing and inspiring. i think what you said about grief was so poingnant. "...but it wasn't going to be the way I assumed." Grieving the loss of any thing we assumed or expected is huge. It does not mean we aren't content or that we are ungrateful. It simply means that the image we had and expectations we held are no longer. We must embrace our new reality- the real reality. Btu we are entitled to mourn the loss of the reality we thought we'd have.
    Well done friend!
    V

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  6. Hi, I am in limbo. I know I have some type of arthritis and fibro. One doctor said psa or anklospondyltis. another said i only had fibro. Anyway now with the anemia and tiredness I just feel bad. I am happy though that I have a doctor who is treating me.

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    Replies
    1. Mary,
      I am in the process of finding out what is happening with my bones. I have symmetrical pain but asymmetrical acute pain. I had a bone scan and will get the outcome of that on the 31st... we will see...

      Delete
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  13. Carrie, Though I've lived with my chronic illness - dystonia - almost all my life, I can completely relate to your post, including how blogging fits into the whole picture. When I began Chronicles Of A Dystonia Muse, the attitude my writing embodied was the best possible me, the aspirational me, and sometimes utterly true to the real me. Over time, as I've built my site, I find myself coming closer and closer to the voice I espouse. Many (maybe even "most") days, it's really who I am. I believe that by projecting the best we have inside us, we journey closer to that place. As for acceptance, I don't know that I "accept" my dystonia - I'd much prefer not to have it - but I strive to accept my life with dystonia. -Pamela-

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  17. I know this process all too well. I first went through it when I was 12. Then a few times after that with new diagnoses. I really enjoyed this post and follow you on twitter!

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  18. Hello I am wondering if any of you have had an experience like my wife and myself have had. I put a short My Story on my website about what we did and how we succeeded with a very serious health crisis. It took world wide research and many years to win. If you have had something similar I would be interested in hearing about it. My site is www.thereesewellnesssytem.com. Its nice to hear from those who have been down the path and won. Thanks Jim

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