Friday, January 17, 2014

How Do You Deal With Pain?

Over the past couple weeks, I've been contacted by some very nice people who have read my blog posts. One of the questions that keeps coming up is, "How do you deal with your pain?" My initial answer is always just take it one day at a time. This is true because I can feel different every day; however, the more I think about this answer, the more I realize it isn't really that helpful. I've been pondering this question a lot over the past few days. Below are a few things I do to deal with the pain.

I am in no denial that my situation kind of sucks and can hurt like hell on certain days; however, watching someone you love go through chemo and radiation treatments for their cancer, makes you view things with a different perspective. I guess you can say my compass is set differently. There is never a day where I don't hurt. My pain can change in severity and vary in location every day; however, it is not going to kill me. It is helpful for me to think of dealing with pain almost like a competition. The competitive mindset I had when I played soccer is still with me. Instead of being geared towards the game, it is geared towards all the various medical issues. In my head I think, who is going to win? Am I going to take control over the pain or am I going to let the pain control me. Some days I win and some days the pain wins. Depending on what level of pain, determines what activities I will participate in that day. It's really important to listen to your body and not cause further injury. At the same time, it's important to learn how to go about your day even if you hurt. With me, it's important to do some amount of exercise every day to keep my other joints strong.

If you want to maintain any amount of independence, it's important you learn how to modify various things. I've been doing this since the day I became injured in 2005. I am very stubborn about giving up any of my independence. My mind definitely has to think outside of the box in order to get tasks done. If that fails, then I will ask for help. I've been modifying tasks for so long that I don't think of it being any different than a "normal" person. I had to sit and really think about what activities I modify. Honestly it's everything. To name a few, I use my legs and my feet a TON. If I'm sitting on the couch and the person next to me says, "Hey, set this over there" they will put it between my feet and I will set it down that way. If I want to make a smoothie, I will climb up on a chair because I can't reach the top of the appliance. I get dressed/shower dangling over at the waist because my arms can't reach my head. I use straws in water bottles to get the last bit at the bottom because I don't have enough arm motion to raise the bottle to the correct angle. When people shake hands with me I don't extend my arm out. I will bend forward at the waist. The only time these modifications become more apparent to me is in a social setting outside of my home. This is when I really notice that I do things different. My family and I don't give it another thought. It's our normal.

My mom offered to help me make my smoothie but
sometimes it's harder to ask for help instead of doing it myself.

Modifying at its best. My nephew Justin is too heavy
for me to hold with my arms. In order to hold him, I sit on
the floor and bend my knee to support him. There is zero
stress/strain on my arms. 
Find a hobby/interest to use as an outlet. This is my saving grace every day. It is important to find something to distract yourself with so you don't think about how much you are hurting. Drawing and writing are my personal primary outlets. I can put music on while I draw or write and concentrate strictly on the task at hand. For some people they might gravitate towards reading, sewing, painting, watching a movie etc. Over the past week I've been experimenting trying to find the most comfortable position to draw. I've found I can't draw at a kitchen table, on the floor, on a bean bag, on the couch etc. I did find if I sit in our new recliner I can prop well enough to draw for short intervals at a time. If you are a chronic pain sufferer, I think finding a hobby is extremely important to help get you through each day.

I'm happy to have found a decent comfortable
position to draw even if it is for short intervals
at a time. It's better than nothing. 
Communicate with people. It can be done in various ways. There's one-on-one communication, email, phone conversation, text messaging, letter writing, blogging etc. With pain, one of the things I really think you want to avoid is isolation. I think it makes things worse because you're not thinking about anything else. I guess having 7 people in the house from ages 8-91 is a plus haha. It's never quiet and there is always someone to talk to. With chronic conditions, it is normal for relationships to change. Some people are accepting of this and some are not. Even though it can be a hard confusing time, it's bound to happen. This is one reason why it's important to be willing to make new friends. You can never have too many.

Get a pet! Pets are great companions. I'm personally a dog lover. Growing up, we always had a dog. I can't imagine life without one. They accept you no matter what physical ailment you have. They are happy to play one minute and lay by you the next to keep you company.

Daisy is happy to play

Daisy is also happy just keeping me company
LAUGHTER!! Find something to make you laugh. Don't be afraid to make yourself look silly and don't take life too seriously. Sometimes it feels good just to let go.

My niece Lizzy got this outfit as a gift. I told her I bet
I could fit in it. Surprisingly, I fit into her clothes.

Here's Lizzy in her outfit. She had my sister sew
the pants smaller so I wouldn't fit into them haha. 

People with Joint Hypermobility Syndrome aka
Ehler-Danlos Syndrome-Hypermobility Type lack the
protein collagen in their body. In my Christmas basket
 was this hair product. It says it has instant collagen infusion.
Now I joke I should have been looking in the hair care
aisle for medical treatment all these years.
One of the most important things I have discovered is to do something to help another person. Sometimes people with chronic medical conditions can get caught up in the drama of it all. It's important to take a step back and look at what you could be doing to help another individual. Be it a listening ear, writing a blog post, donating art, having a friendly conversation, or supervising a child so they don't burn the house down while they try to cook a pancake. The point is, you don't have to go out of your way to help another person. It can be as simple as just listening to somebody and letting them know you are there for them.

Everything I have written on this post I do all the time. You have to live life with a purpose. I never said it was easy but I refuse to give in. Every day, I have to chill out at some point in the day. It's just the way it is. If your body isn't working well one day, do something that only requires your mind. I hope some of you have found this post helpful. It doesn't cover everything I do to deal with pain but I think I've covered the most important ones that I do.


  1. I really like this - I completely identify with it. I think stubbornness and determination are essential, and love the competition analogy - I say this too, and yeah, sometimes the pain wins and sometimes I do (well, kind of!). But I think it is really hard trying to explain that it never goes away, every single thing you do has to be weighed up and the consequences measured against the effort required. If you don't fight through the pain some days, I think I'd go crazy letting my pain dictate every single day. I've actually found Pinterest really good for.... kind of realizing visually that there are lots of ways of looking at it, and from lots of different perspectives, chronic pain syndromes and various illnesses - they all have similar messages. In a strange way they are comforting for me -, knowing some of the things I think are shared by so many other people.

    Also - your photos are kind of weird for me (sorry, that sounds bad, but I don't have a better word!) It could be me - the positions you are in; where you have that orange pillow tucked right under your arm (does that help your pain? I have liked to have a pillow tucked close to my body, kind of under my arm and also to have my arm supported on top of it - also while writing/ drawing/ painting etc. - right from my initial injury); and the neck pillow, and the neck collar; and the angle you are lying on the sofa with your head up - really!

    I also use my feet a lot. At one point I was getting pretty good at using my toes to control the mouse pad on my laptop!! I am glad my hands can do that now. But my left arm and hand are fine, since mine was a right-sided injury, and I've started describing myself as a confused ambidextrous person... I get so mixed up between left and right now, and will automatically do something left handed and not even realise it until afterwards. But feet, legs (constantly covered in bruises from lifting/ kicking/ moving things!), chin (light switches), teeth - lots of adaptations!

    Great post, I'm really pleased I found your blog, and thanks for your comment on mine - I replied there. :-)

    1. I find comfort in other people's stories too. It's a reminder that you're not the only person going through some health ordeal. You also find people who have similar stories and it's important to find people who understand that.

      Haha, with the orange pillow it was serving a purpose. On my lap is portable "lap desk" I guess you would call it. My arm can rest on it just about to my elbow. The pillow goes under my elbow to give support so I don't have that weight on my shoulder. I can't stay in that position long but it's the most comfortable position I have found for me to draw for short intervals.

      With the laying down position, I know it looks uncomfortable haha. It's not for me though. I have a pillow under my shoulder blades, one behind my head and the neck pillow. There's support and the position of my neck actually gives a little stretch which helps. I'm having neck issues due to my muscles so this is one position where I can get a gentle stretch.

      I'm a confused ambidextrous person too! I completely get what you are saying.

      I am happy I found your blog as well!!

  2. I just saw your blog. I have EDS-HT and I live in IL too. I was also diagnosed by a geneticist.

    When I read about your diagnosis, I had to stop & check your profile twice. I thought someone had written the post about me!

    I will read the rest of your posts and email you directly. We definitely need to compare notes!

    May you have a restful, pain-free day.

    1. Yes! Definitely send me an email!! I would love to compare notes too. Hope you're having a low pain day.If you're like me, this frigid weather isn't helping!

  3. Thank`s for sharing your #story Megan. I wish you all the best in the future and really hope there is something that can make your life easier. You deserve it. Stay strong!

  4. Thanks for the FANTASTIC post! This information is really good and thanks .

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