Day 7 of the 30 Day EDS Blogging Challenge asks…
What are your top 5 coping tips?
Well I have mentioned some of the ways I cope in other posts so if you find this a bit repetitive, I apologize (and thank you for reading!) but if you haven’t heard any of these before now, then get to reading my friend! (Just kidding.. Sortof.)
Anyway, coping with EDS is kind of an extensive subject. I could talk about coping with diagnosis and knowing that everything in your world is different after you hear the words, “Ehlers-Danlos Syndrome” for the first time or I could talk about coping with the pain or many other types of coping involved with EDS. There is definitely a lot of coping. For the sake of this post, I am going to mention coping skills for all different versions of coping. I am also going to break this post into sections because I have a lot to say and let’s face it. Who wants to read 9 paragraphs today. So stay tuned for some of the coping skills today and look for some more tomorrow. 🙂
The first way I would like to mention is a mechanism for coping with diagnosis. The best medicine for that original heartbreak is to be informed and talk about it. I have found through personal experience there is a thing as too much googling. When I first heard about EDS I spent weeks on the computer googling EVERYTHING. I would try and read anything I could find but that did not help much. I actually got to where I was afraid of myself and what MIGHT happen to me. There are so many unanswered questions about EDS in general and everything you read won’t happen to you because all our stripes are different. Zebras are like fingerprints. However, being informed about EDS is a great way to feel more at ease with the diagnosis. I have found that it is easier to deal with the symptoms when you understand the cause. Another part of understanding is making sure that your immediate family and friends understand. Nothing is worse than dislocating in front of someone who doesn’t know what is going on. They will panic and you will spend your time trying to comfort them instead of getting the help you need. It’s not easy trying to reset a body part and talk a friend down at the same time. It is pretty rough to say the least. Talking about diagnosis and symptoms with family and friends will make it so much easier for you to deal with the initial shock and make transitioning into day to day easier. Try to open up and tell a friend about your struggles and then they won’t be struggles anymore, they will be EveryDay Successes.
Another way I have learned to cope with EDS is something I did an entire post on yesterday so I will make this quick and if you want to hear more Click Here for yesterday’s post. I struggle with something called Painsomnia. This is what we like to call miserable… opps… I mean frustrating. Painsomnia is when someone is exhausted but is in too much pain to sleep. I use simple distractions to help with this. I listen to audio books that I have heard before to help get my mind off the pain and still fall asleep. It seems to be working well, but it wont work for everyone. The distraction that works for you is something each and every person will have to find out on their own.
Well that’s it for today. I have some tips for coping with pain coming tomorrow! Please come back and check it out!