Painsomnia

Painsomnia is heavily used term in EDS groups. It's almost as straightforward as it sounds, almost. Yes, pain so terrible that you can't sleep no matter how exhausted your body is. What isn't included in the synopsis definition is the deep amount of anxiety that brings. So as I begin this, it's 4:49am and I haven't slept since 6 the prior morning. Being that I have a doctor appointment in 3 hours, I don't even dare attempt sleeping because waking up off of a couple hours of sleep is even worse than no sleep. There's a great amount of certainty that my circadian rhythm is a speed metal/elevator jazz mashup with some strange Phish like noodling paired with a drum core line. Sounds fun, huh? Even Stella count get her groove on to that. The real anxiety is what the painsomnia is a manifestation of. Ooooohhhhh now we get to the really juicy part - painsomnia or insomnia for me are very frequently paired with cardiac events. So I'm still riding this elevated blood pressure wave that kicked off hardcore Saturday afternoon.

Graphic detail time: because of dysautonomia my body can "forget" how normal automatic things are supposed to function...like all of them. I vascilate between extreme constipation (dysmotility) and food rejection where I either violently vomit multiple time or have sudden bowel movements  (gastroparesis) when one autonomic function messes up, others usually follow suit. Another form of dysautonomia I have is called POTS (postural ortho static tachycardia syndrome)  so Saturday when one autonomic function was upset (bowel movements) my other autonomic functions started failing as well. I was dehydrated to begin with which I'm normally very good about but I wasn't feeling well so I was sleeping instead of taking in fluids. My platelets have been particularly low Saturday is my lowest reading yet, so bloodflow isn't what it should be. My blood is very thin, platelets are what thicken it up. Since my platelets are under a hundred, my body gives me pretty good clues like the petachie I get, lethargy, pain in my abdomen, extremely easy bruising...so there's another autonomic function gone wrong. I have ITP idiopathic thrombosis pupura aka my spleen sees my platelets as a threat and so they are constantly at battle. In my mind this plays out like the scene from West Side Story when the Sharks and the Jets are in a dance/snap fight. Lucky me, my dysmotility was done but gastroparesis kicked in. Which makes the scene  for this lovely mental image. Dysmotility + gastroparesis = suddenly, urgently and definitely painfully I was shitting large boulders. I was honestly afraid for a minute or two that one of those boulders was going to break my toilet and send porcelain shards flying through the bathroom. But instead it knocked my heart out of rhythm. I started tachycardia almost immediately. I could feel my jaw tighten and my younger swell and knew it was only a matter of time. Two sublingual zofran later and cut to me doing my very best Linda Blair impression. Zofran didn't even touch it. Benadryl? Threw that up too. After 3 hours of chest pain, dizziness, nausea, abdominal pain and shortness of breath it was time to suck it up and go to the ER.

We get to the hospital and I triage in. From what I'm told my lips were blue but I could kind of see my hands and knew they didn't look normal. Pulse ox of 81 and dropping to 76. I knew what this meant. I was having another POTS attack. My bp was still pretty elevated. I got into a room and they were setting up an IV and asking me medical questions. When the nurse and doctor asked what I need, I asked for fluids because I knew how dehydrated I was. That's it - fluids. What my nurse came back with was a bag of ringers solution, pain and antinausea meds and three warm blankets. Wow! I never knew that could be a thing! I didn't ask for pain meds or nausea meds but the doctor determined that's what was appropriate 🙌🏽 My nurse was unfamiliar with EDS and asked a lot of questions, my doctor was pretty well versed and also asked a lot of questions but wrote things down as well. Once again, a medical professional truly had pity for me. Pity kind of sucks and I would really rather not have it, if it's all the same to you. But it was clear that nurse was shook by my medical history and apologized that I had so many medical problems. All in all I'm not sure which of us impacted the other more. I've had good and bad experiences in the ER, that happens when you have a genetic condition but never have I walked away knowing my approach changed them. That nurse was stunned that I treat others so nicely even when in pain and the only real pain complaint they got was when pushing on me. It's ok to be sick and sad. It's ok to be sick and happy. It's ok to be sick and mad. EDS has taken a lot from me - mobility, physical security, financial stability but I have developed something wonderful because of it too - resilience.

Resilience has become an all important component to my life. There is never a 100% certainty of what time we are given here but statistics like to remind us of possibilities. Another cardiac event and a few subsequent ones has lead to more testing and of course that men's results. Results from last time: I don't have Cushings but I do have an endocrine disorder and will see a specialist for that at some point. Saturday's results I didn't get as lucky on. I'm back in renal failure again and I'm in stage 3, grade2 liver failure. Add a pancreas that isn't functioning properly and a heart and lungs too. What do you get? That's right! Multiple organ failure...again. Statistics say I have a 12% chance of surviving a year. My resilience says I have a lot longer