“Our backs tell stories no book have the spine to carry” •

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It’s having the courage to not need all of the answers. Wherever you are right now is exactly where you need to be. Seven billion in this world can’t do everything in exactly the same scheduled order. We are all different with a variety of needs and goals. What is early? What is late? Compared with whom? Compared with what? Remember that your life is not on anyone else’s schedule. Don’t beat yourself up for where you are right now. It’s your timeline, not anyone else’s, and nothing is off schedule.

2019 I’m ready for you: nothing like beginning the new year with my 7th brain surgery – removal of my right styloid and right C1 transverse process to help improve the blood flow to and from my brain 🤘🏼🧠💫

 

After spending 5 hours in recovery ICU, I was finally transferred to M5 ward at Addenbrooke’s Hospital. Let’s just say that recovery after this surgery has not gone as smoothly as others and unfortunately I’ve suffered from some post-op complications. My swallowing has been tremendously affected due to oedema and possible nerve damage from the surgery site, but we won’t know the extent of permanent nerve damage for another few weeks once initial swelling has reduced.

Reality of recovery is never simple. No matter how much you try to physically and mentally prepare yourself for it and also for potential complications post-op, sometimes you just get completely blindsided.

Last night was one of the toughest parts to recovery I’ve suffered from to date. Unfortunately, I suffered from a major dystonia episode lasting over 2 hours. It’s been the worst dystonia episode I’ve experience post-op I’ve ever had. My body was uncontrollably contorting and spasming with my torso and head being thrashed with my legs seized up. I’ve never felt so exhausted and fearful in my life all at once. It was traumatising and very painful. Not knowing when the uncontrollable spasms, contortions and pain would end was unbearable, not just for myself, but also for my family members and loved ones seeing me suffer. Finally after 2 hours, an emergency on call doctor came to my rescue and administered a muscle relaxant suppository which immediately calmed me down, allowed my body to relax and unwind from my awkward spasming. At the end of it all, I completely drenched the bed with sweat and tears feeling completely knackered. The unpredictable nature of EDS makes this chronic illness so much more difficult to deal with. But I’m grateful for the medical staff who were able to help stabilise my body and provide relief.

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We’d greatly appreciate as many prayers, thoughts and wishes as a family to help us get through this difficult time of post-op recovery.

•Laura Lee • 

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