Making It Through Pain

In December of 2017, I signed up for Chronically Stamped. Chronically Stamped is:

" A community of individuals suffering from chronic Illness that support each other other through letter writing. Our unique perspectives build each other up and have the potential for so much positivity!"

To sign up, click on the link below:

https://chronicallystamped.wixsite.com/chronicallystamped

My first Chronically Stamped Letter writing! 

For the month of May I was happy when a letter arrived in the mail for me. It wasn't a utility bill or a medical bill or just plain old junk mail. It was an actual personal letter from someone who also suffers from a Chronic Illness. And to my surprise the letter was from the founder of Chronically Stamped! Nicole! Nicole suffers from severe Complex Regional Pain Syndrome. She said It's been lonely in her health journey, so she decided to use her love of letter writing to create a unique community of brave souls who also suffer with Chronic Illness.

If you are curious on how the letter writing works. Here is a link with all the details. I highly encourage you to sign up.

https://chronicallystamped.wixsite.com/chronicallystamped/blank-3

Nicole asked me the following questions at the end of her letter. These are such great questions! They inspired me to want to know what other chronic illness sufferers would say when asked the same questions. This is where you come in. I would love for you to take some time and answer these questions from your perspective. Just copy and paste. Take some time and reflect and then send them my way. If you have any questions let me know.

Questions:

What is your Chronic Illness?

What has your Chronic Illness been like?

Special Strategy Questions:  

How do you cope with your Chronic Illness?

How do you stop a flare?

How do you remain calm?

How do you deal with life?


The following are my answers:

My Chronic Illness:  It all started with a T-bone auto collision with a Dump Truck in 2006.  It has turned into a life living with Fibromyalgia and Chronic Fatigue Syndrome (CFS)/Myalgic Endencephaloyelitis (ME)
Read my full story here: My Story

My Chronic Illness has been: Up and down, bad days and better days. Not knowing what is wrong, getting some answers and then other symptoms being over looked or pushed to the back burner. Isolation has been a big deal.  I really struggle with the mindset that people only see the "better day" version of me. They don't see what my Husband sees and what we have been dealing with. The not walking good, debilitating fatigue, Shawn having to carry me or put me in his wheeled computer chair to help me get to the bathroom and to bed. Whole days in bed, severe pain even to the touch. Over stimulation any time we go somewhere (noise levels, bright lights, too many people).

But at the same time I have developed compassion for other people who walk the road of pain and suffering. I have been forced to slow down and find the joy in the simple things of life that are all around me. My relationship with the Lord has grown immensely for the simple fact that most days I have to rely on His strength and grace to get me through the day. Living with a Chronic Illness has kept my Husband and I close.

How I try to cope: God. "Do good and trust God." Psalm 37:3 I love this verse! This is one of my new favorite verses.

I cope with having the mindset of "Take one day at a time" and telling myself that in most cases "It will be there tomorrow if I can't get to it today." This is very helpful because it takes off the stress and anxiety of trying to do and get things done.

I cope by "Pacing". I learned this technique at the OHSU Fibromyalgia Clinic. The idea is to do something then rest, do something and rest then repeat. It doesn't necessarily help with the pain and fatigue but I have definitely seen a difference in what I can do in a day. We have to do this even on the better days.

Seek out "Sit down Hobbies" I was also advised to do this from the OHSU Fibromyalgia Clinic. I was told to find things that you enjoy that require sitting down to conserve energy or to do while you are resting, i.e. blogging, journaling, reading, crafting and kayaking (on better days).

Another idea is to try to modify anything that is possible. We got a tall stool for the kitchen so I can sit on it while doing dishes and meal prepping. Another example is to sit down while folding clothes.

How I try to stop a flare: (or more like how to ride out a flare lol)
-Epsom Salt bath with Essential Oils are my number 1 go to.
-Heated mattress pad.
-lots of rest
-Netflix
-Mind set: Just go with it, trying to fight it just lead to frustration and sadness so I do my best to stop it/prevent it and then just go with it and try to wait it out.
-Distraction: When pain is unbearable and going to sleep hasn't worked. I play games on a tablet. I played through "Plants and Zombies" multiple times. I am currently playing "Zumbie Deluxe". It keeps my mind distracted from the pain and suffering. It is a fun way to pass the time.

How I try to remain calm: Pray, Journal feelings and frustrations, Be outside, change of scenery, essential oils. Put everything in God's hands and trust Him with everything ("Do my best and trust God with the rest"), get lost in crafts or home projects, drink tea, do something for someone else (doing something for someone else is the best way to overcome feeling down in the dumps). Surround myself with things that spark joy, mine include candles, essential oil diffuser, white fairy lights, vintage items, and all things tea.

How I try to deal with Life: Trust God, He is in control, try to see His perspective and His purpose for my life. Always try to see ways to help and encourage others. This is the best way to try not to get lost in my own pain and suffering. When I have the energy, I take advantage by going on adventures with my Husband. I try to be intentional on better days with what I do with my energy.

So there you have it! I hope you found some ideas you can try or some encouragement from my answers. It's now your turn!

What are your answers to these questions? I would love to hear them and break down each question to include an inclusive list and post what everyone willingly shared.

Copy, Paste and fill in the blanks!

My name:

My Chronic Illness: 

My Chronic Illness has been:

How I try to cope:

How I try to stop a flare:

How I try to remain calm:

How I try to deal with Life:

Send me your answers! Reply on here or send them via email Amberwegmuller@yahoo.com

Love and prayers. ❤
-Amber

Sources:

Chronically Stamped.   https://chronicallystamped.wixsite.com/chronicallystamped 2018.



Comments

  1. What a great idea! I'm glad someone organized this. There's something very cheering about getting snail mail.

    ReplyDelete
  2. Great idea! Makes such a difference to know that others care :)

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  3. It's so fun to get snail mail that isn't a bill or junk mail.

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  4. Hi Amber, just wanted to let you know that this post of yours was a readers' fav on my Twitter for the week, and I've listed it here. Keep up the great work with your writing and raising awareness!

    https://www.achronicvoice.com/2018/08/24/issue-124-top-health-tweets/

    ReplyDelete
    Replies
    1. Oh wow! Thank you for letting me know. I appreciate it.

      Delete

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