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I have Ehlers-Danlos Syndrome otherwise known as EDS-H. The H means I am hypermobile. Think circus performer contortionist type hypermobile. This is one of those “but you don’t look sick” problems. My connective tissues are so loose that my muscles have to do most of the work holding my body together. That includes holding my head up. My throat has always had issues. Especially spasms. I have vocal chord disorder because of the EDS. I have difficulty swallowing and talking for long periods. Due to the overused muscles, I can’t use dictation to write.

My spine quite often hurts so bad it feels like it’s going to tear right out of my back.  The other problem similar to this is with my fingers. They feel like they are going to bend backward and sideways and rotate around until they tear off joint-by-joint.

EDS-H also includes nerve problems. I have the wonderful fun of neuropathy where my nerves decide to send hot, shooting electrical bolts up and down my entire body. If only I could harness it. I am certain I could provide the power for a small city from all these jolts. The other major nerve issue is called allodynia. In general, this means things that shouldn’t hurt do. In daily life, it translates to this: someone shakes my hand and it feels like a million, very sharp knives are scraping against my hand instead of the other person’s hand, the keys on my phone or keyboard are all needles pressing up at me every time I press down. It’s a needle board. Even my clothes rubbing against me are like the hand, the fabric is made up of knives.

Those are just the highlights of what it’s like. There are up and down days, some better than others. When I travel I have to recuperate for nearly twice as long as the trip. If I have a massage or lie on my traction unit, whatever healing that takes place is quickly undone later in the day or overnight. This is why it takes so long to recover.

This may sound negative, but it’s a fact of Ehlers-Danlos Syndrome. The challenge is in learning how to live with these facts of life. Finding coping strategies and being open to changes and adapting. Because one week your body may respond one way, but the next week it’s entirely different. The key is in having patience with yourself and your body and building/relying on your support network. It’s difficult though. I don’t reach out to people, I am not good at calling people. This has caused difficulties and caused me friendships. Some just slipped away while others became mad.

EDS can be a lonely, isolated world. If you let it. Writing is often called lonely and isolated. But neither have to be true. With both, you have to look at your situations, be realistic about what you can accomplish, and most of all keep moving forward. Even if it’s a little bit at time. Which is in my case, is precisely how I work. I don’t post a lot here and I am slow to get my next book out. But I am moving forward. I refuse to just give in and lie down.

 

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