I often get asked, “Are you in pain every day?” And I know if I didn’t have Ehlers-Danlos I would be thinking what does it feel like to have Ehlers-Danlos Syndrome?
Last week I talked about my blood infection and the resulting hospitalization. This week I’m going to share what my EDS felt like every day in May. I started recording my daily pain reports at the beginning of May, before I was hospitalized, and decided to continue my recordings even when I was hospitalized.
Just because I don’t talk about my physical pain that often, most certainly does not mean that it doesn’t exist. Matter of fact, I am indeed in pain 24 hours a day, 365 days a year. On an average night I wake up 2-3 times in pain and there’s never a moment in my life that I’m not in physical pain. Some days are worse than others, but I am thankful for the bad days because they reveal how amazing the good days are and how blessed I am to get to experience the good.
I do not remember what life without pain is like and to be honest, the doctors don’t know if I’ve ever actually experienced life without pain. When I say I’ve had a “good day” that means my pain was at the lowest a 3 out of 10 on the pain scale. I’ll never say that I’m experiencing or have ever experienced a 10 on the pain scale because I believe things could always be worse. Although, I will readily admit that I have experienced more “9’s” than I would prefer.
Pain is a part of this broken world, we all experience it, and we all get to choose how we respond to it when it comes. For me, my present sufferings point me towards heaven. I know that my present sufferings cannot be compared to the coming glory.
In the meantime, I press on and keep up the good fight. Every day is different, and no two days look the same. With that being said, here is my report of what EDS felt like for me in the month of May…
May 1 Today EDS felt like a painful IV going through scar tissue.
May 2 Today EDS felt like my back “locking up” on me.
May 3 Today EDS felt like having to cancel my plans for the day because I was too dizzy to get off the couch.
May 4 Today EDS felt like stabbing stomach pains and nausea.
May 5 Today EDS felt like paralyzing fatigue.
May 6 Today EDS felt like my veins were exploding as they brought in specially trained nurses to dig for a vein.
May 7 Today EDS felt like brain fog…I had to reread an article 5 times because I kept forgetting what it said.
May 8 Today EDS felt like my hips popping in and out of the socket, multiple times.
May 9 Today EDS felt like achy joints.
May 10 Today EDS felt like nausea and my stomach growing 2 sizes/bloating.
May 11 Today EDS felt like having my dad drive me to my infusion because I felt so weak.
May 12 Today EDS felt like going to the Emergency Room.
May 13 Today EDS felt like the most excruciating migraine I’ve ever had.
May 14 Today EDS felt like waiting for answers.
May 15 Today EDS felt like getting cut open to remove my infected port…without being sedated.
May 16 Today EDS felt like 10 needle sticks and veins bursting.
May 17 Today EDS felt like being emotionally drained.
May 18 Today EDS felt like achy joints and a migraine.
May 19 Today EDS felt like skin reactions/blisters from EKG stickers and skin tearing from taking IV tape off my arms.
May 20 Today EDS felt like starting over. I came home after 8 days in the hospital and I’m not physically able to do any of my PT exercises that I’ve been working on for 4 months.
May 21 Today EDS felt like sleeping 14 hours and not making it out of bed.
May 22 Today EDS felt like talking to pharmacies, hospitals, doctor’s offices, and insurance.
May 23 Today EDS felt like ignoring the pain and fatigue so that I could spend time with the family.
May 24 Today EDS felt like muscle aches and pains.
May 25 Today EDS felt like severe stomach pains and nausea.
May 26 Today EDS felt like sleeping 16 hours.
May 27 Today EDS felt like back spasms, neck pain, and stomach pains.
May 28 Today EDS felt like a mental game. I needed to push myself today, but knowing when to stop has never been my strong suit.
May 29 Today EDS felt like painsomnia.
May 30 Today EDS felt like sweating, migraine, blurry vision, fatigue, nausea, and joint pain.
May 31 Today EDS felt like back and neck pain.
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