Emotional and physical challenges of living with a rare disease.

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Hello I have a rare disease called Carpenter Syndrome. Living with a rare disease I have seen that it comes with physical and emotional challenges. My blog mainly focuses on working through some of my thoughts of living with a rare disease to help me heal from some things. I also hope that those who have rare diseases who read my blog will find it helpful and encouraging.

Friday, March 17, 2023

Chronic Pain & Rest.


 While I was icing earlier today, I was on instagram and came across a post from a page called the_scoliosis_book.  The post talked about how sometimes we have things that we want to get done or accomplish but can't get done because of having to much pain in our bodies and instead have to rest.  I thought this post was so relevant to people who deal with any type of chronic pain. I personally know that I sometimes either feel guilt or feel like I am being unproductive on days when I have to rest more due to pain.  This post was a good reminder to me that resting is a way that on some days I have to do more of to take care of my body.  I also have had to learn how to better pace myself during the day to try and avoid flare ups.

How I incorporate movement throughout the day.

One thing that I have found helpful when it comes to doing chores or any type of movement is by using a timer.  I will set a timer whether it is for ten or fifteen minuets and will do either a chore or a short low impact workout such as my PT exercises or upper body exercises.  This helps me to set a goal that I know I will be able to do and then stop when the time is up.  I try and do this at least 3-4 times a day but it also depends on what type of day pain wise I am having.  Some days I get more movement in and other days it is less. Sometimes my movement is also just taking a break to stretch as sometimes even that alone can help my body feel a little better. I think the main thing is finding what is helpful and works for you.  One thing that has helped me on days when my pain level is higher is having a set of hobbies written down that I can go through and do to try and help distract myself from the pain.

Dealing with High Pain Days.

One main thing that I have found very helpful to do when I have more pain is listening to soft music as it helps me to take deep breaths and calm my body down some.  Journaling has also been a great source for me to write down the thoughts that go through my head when my pain level is higher.  I also have a list of hobbies that I like to do and will do some of those to try and distract myself.  Some of these include

-Coloring in my adult coloring books, doing puzzles, or watching a funny show or movie to name some of them.

I think the main thing for people who suffer with chronic pain to remember is that rest is a way that we sometimes have to do more of to take care of our bodies and finding a balance that works for you between  movement and rest.  Until next time Laura.

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