exhausted, angry, sad, defeated, hopeless, sick.
I woke up on January 1st after a very disturbed and restless pain filled night. Woke up might be a bit of a lie, I hadn't really slept to begin with. The only thing I had energy to do was take my medication, and walk upstairs at my aunt and uncles house to boil the kettle for a hot water bottle. My parents took one look at me and knew right away that I was hurting a lot and just trying to stay standing long enough to try to make myself more comfortable. I returned to bed immediately and stayed there for the next 5 hours trying to rest and save any "spoons" ( more on that later) I had left for our big family dinner that night. I managed to be there, heavily medicated, but happy to be in the company of so many people that I love. small victories.
Fast forward to today, January 10th, and not much has changed. I've spent the bulk of each day in bed/on the sofa resting and trying to get my pain to a low enough level for some sleep. I've been nauseated to the point of barely managing to drink my smoothie throughout the day. The pain has been horrible, and I feel like I've been in a medicated haze most of the time. I'm currently taking 20+ pills a day, about half of which are prescription meds. In the last year I've accumulated more prescriptions than either of my parents have accumulated in their lifetimes. oh, and now I have 3 chronic illnesses, just to put a nice big cherry on top of the challenging and frustrating start to this year.
I suppose having the diagnosis really only changes things for the better, I can actively start getting treatment for this new diagnosis, instead of simply treating the pain with high doses of narcotics and not really knowing what the cause was. Although before Monday I could still pretend that it was a simple issue, something with a timeline and a cure, not yet another disease that will live with me for the rest of my life.
Interstitial Cystitis. I'm still getting used to how those words sound. Also called painful bladder syndrome. Widespread inflammation and in some cases ulcerations to the bladder walls that cause severe pain and pressure, as well as urgency and frequency issues. Its unknown what causes it. There are medical treatments, and some procedures ( bladder dilation, botox injections) as well as lifestyle changes ( no coffee, spicy foods, acidic foods) that can help with symptoms. But there is no cure.
I am living with endometriosis, fibromyalgia and interstitial cystitis, if you can call it living. More accurate would be surviving.
There is still a lot of processing happening in my mind. Right now the overwhelming feeling is anger and hopelessness. I don't understand why this is the hand I've been dealt, and, for now anyways, it feels insurmountable. It feels like returning to work is so far out of my grasp, as is anything resembling my former life. I don't know how to stop feeling that way, so, for now, I'm just going to let myself be upset about this, but only until it doesn't serve me any longer. Before January 1st my head was in a better place, I had dreams and plans for 2018. They're all still there, just put away in a safe place until I'm ready for them again. I hope I don't have to wait too long.
A note about my "spoons" comment earlier....this is something called spoon theory, developed by someone who lives with chronic illness as a way of explaining what its like to feel tired all the time, and to have to constantly make choices and compromises of what you can take on each day, depending on the number of spoons that you wake up with. A link here for a more detailed explanation: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Thank you for the love and support, friends, and as always, thanks for reading <3
xo Em
