My June Experiment: A Chronic Voice Linkup

Welcome to my June experiment. My life will only get worse unless I try something different. Here's what I intend to try this month to make living with the progression of fibromyalgia, arthritis, and endometriosis better.

Welcome to my June experiment! This entire year has been nothing short of a shit-show. This morning my daughter and I were discussing how we have basically missed out on half of 2020. Even though my state’s lockdown didn’t begin until the end of March, I only left the house a few times between New Year’s day and the day my state closed because of my war with abdominal adhesions. With California slowly coming out of lockdown and I will soon have access to my favorite places. This means that I need to figure out how I am going to LIVE while still battling the same health issues.

Sheryl’s prompts for June A Chronic Voice linkup are searching, hoping, traumatizing, honoring, and responding. Watch me turn them into a month-long experiment that will hopefully turn into something good for me and for you. Because we could all use a little good right about now.

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My June Experiment Includes a lot of Searching

The fact that my chronic illnesses would someday progress is something that I never really wanted to accept. I truly wanted to believe that I could improve, even if just a little. But as the past year has made undeniably clear, I am passed enjoying the extent of improvements that I did between 2016-2018.

My symptoms from psoriatic arthritis, endometriosis, and migraines have reached new levels. The reality is that even though I am treating them the same way, the results will never be as good as they were before they progressed.

The fact that my chronic illnesses would someday progress is something that I never really wanted to accept. Quote from Cynthia The Disabled Diva My June Experiment

On one hand, I accept and acknowledge that it is what it is. On the other hand, I refuse to give up and will continue searching for ways to prevent pain from destroying my life.

I am searching for things beyond products or treatments. What I am in search of is finding a way to live with my illnesses without feeling guilty for not living like my family and friends who are not chronically ill.

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Hoping for the Best isn’t Enough

With the realization that I won’t really improve weighing heavily on my mind, I feel it is necessary to share that I haven’t given up hope. I still believe and hope that I can continue to find new ways to do more.

I honestly hate when people say that all they can do is hope for the best. It comes off as a cop-out, like, I will hope but not put any other effort into making a change.

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May My June Experiment NOT be Traumatizing

Living with multiple chronic illnesses that do NOT get along with each other is traumatizing in its own right. But so is accepting the way each of them forced you to change your life as part of your new life.

For example, I have spent most of my chronic life loathing how right from the beginning fibromyalgia and psoriatic arthritis worked furiously to turn this social butterfly into a hermit crab. I spent years trying to regain my wings and for a few, it worked. Although the time I spent fluttering around was still less than before I was diagnosed, it was more than what I had been able to do in over 13 years.

Losing that freedom has been traumatizing. I feel like my wings have been clipped. If it weren’t for being able to go out to pick up dinner or a few groceries, I would feel like a caged animal.

My hope, yes I said it, is that I will not allow the discomfort of my current state of health to traumatize me into not trying to fly now and then. Acceptance of short flights will be mandatory. As you can tell, June is going to be filled with a lot of acceptance.

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This Month will be Spent Honoring My Body

As I try to figure out my “new normal”, I cannot overlook what my body can do. Yes, I am dealing with new setbacks and limitations, but there is is still so much I can do. So instead of wallowing in self-pity, I am choosing to honor and give thanks to and for all that my body can do.

It's impossible to respond to my body and mind if I am clueless about their needs.  Quote ~Cynthia The Disabled Diva My June Experiment

My June Experiment will Require a lot of Responding

Although I journal all the time, it is time to dig deep again. It’s impossible to respond to my body and mind if I am clueless about their needs.

As I shared in the Importance of Journaling, the best way to respond to flares is to figure out as many of their triggers as possible. I recognize and accept that not all will be revealed or ever discovered, but anything I can do to reduce the severity or frequency is worth figuring out.

I am thankful that this process is not new to me. Although I am not giddy about doing this, I am curious to see what I discover. Until then, my month will be spent responding to pain, fatigue, and whatever else my chronic illnesses want to throw my way.

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What does the month of June look like for you?

How would you apply Sheryl’s prompts to your chronic life?

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A Chronic Voice June Linkup party for people with chronic illnesses.

Read more submissions and/or join the party!

Read all of my linkup submissions!

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12 thoughts on “My June Experiment: A Chronic Voice Linkup

  1. Hello again Cynthia, I just loved your use of the prompts this month and turned them into a self-care challenge! It is so clever, and look forward to reading how it turns out. And great insights into acceptance and living with chronic illness, I too am often faced with the knowledge that my illness is progressing and not improving. I hope the rest of the month is kinder yo you, and that you soon will be able to visit some of the places you are missing!

    • And a self challenge it has been. I’ve had to redefine my physical abilities, figure out my body’s new boundaries, and accept the modifications necessary if I want to do anything besides lie on the couch. My hope is that the remainder of 2020 is kinder to us all. Hugs!!

  2. I admire your resilience! Well, my month of June is turning into something bordering on traumatic. I spent the afternoon in A&E at our local hospital earlier this week, and now I am waiting to hear from my doctor about what happens next. There may be some new health issues arising, and they might be related to my rare congenital disease, but I don’t know. Aside from that, we are a family in crisis as my husband refuses to seek help for his mental illness and is rapidly approaching a nervous breakdown. So I am dealing with those this week!

  3. I like how you took the prompts for this month and turned them into a self care challenge.
    I really related to what you shared about it being hard to accept that your chronic illness is progressing and not improving. Thank you for emphasizing that acceptance is not the same as giving up!
    I hope youโ€™re able to visit some of the places youโ€™ve been missing very soon.

  4. I’m looking forward to hearing what your experiment brings. While I love to write, I really have had a hard time journaling (like pen/paper writing). My blog posts tend to be like a journal in some ways because I often release something I’ve been feeling or sometimes even figure out how I’m feeling about something. I know more personal and more frequent journaling is very helpful but I just haven’t gotten myself to do it (other than writing poems).

  5. I hope it all goes well and you get your social butterfly wings back soon. I have never really been much of a social butterfly but I would love to have wings. You may notice the butterflies in my blog header, they mean a lot to me, each represents someone I love. Journelling is such a great way of keeping track of all that goes on and how to identify flares.

  6. Please donโ€™t ever say you feel guilty about not being able to live like other people, you should never feel guilty about anything to do with your chronic conditions. At least you say you hope which is much better. Great post, looking forward to seeing how your experiment goes. Thanks for sharing

    • โค you’d think that after all these years I’d have no issues with feeling guilty for what I can’t do. It’s something that I need to put extra attention on. Thank you for your encouragement. Hugs!

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