I last posted around two weeks ago, on December 1, about how I always finish the day by saying tomorrow will be better. Unfortunately, the last two weeks (two months…two years, really) have not been better, and have in fact been more than my poor body can handle. On top of all my underlying health problems that cause incredible fatigue, I’ve gone to a lot of important but tiring appointments, had a lot of blood drawn, spent a lot of days suffering through horrible side effects of antibiotics, and topped it all off with a late night trip to the ER for severe abdominal pain that dissipated after 24 hours as randomly as it appeared. I now feel like a giant jello jiggler.
The good news, however, is that all signs now point to better days ahead. No more antibiotics for now, no more appointments until January, increased calories in my TPN and a temporary hold on tube feeds, and extra fluids for the rest of the week. It won’t be instant, I know that. After years of setting “I will be better by _______” deadlines, and after years of heartbreak every time Christmas, Easter, my birthday, etc. rolled around and I wasn’t better, I’ve stopped doing that. I still set deadlines, but I do so in a much more realistic and flexible way. Case in point: I should be noticing an improvement from all of these changes by the next time I see my GI specialist on January 19, and if I’m not then it’s time to brainstorm some more solutions.
So yeah, the last two weeks have been really tough, but they could have been even worse. “It takes a village to raise a child”…you know that saying? Well, it also takes a village to support someone with a chronic illness. I have always been an independent person and it frustrates me to no end that I can’t do everything for myself by myself right now. Oh believe me I try to more independent than I’m capable of, but that’s how I wind up running out of a store before paying to avoid passing out in the checkout line and lying in the backseat of my car for 45 minutes before I feel steady enough to drive home…a story for another time! As much as I hate relying on other people to do everything for me, it’s better than putting myself in danger so I’m working on just sucking it up and embracing my dependence.
And even though I hate my loss of independence, I’m part of an amazing village! Let me tell you about some of these amazing villagers.
There’s the obvious ones, like my mom, who has driven me all over the place for all sorts of appointments, who has patiently waited with me for appointments that were running late, who has advocated for me during these appointments, and who has gone out of her way to run all sorts of errands for me so that I wouldn’t have to leave the house. And there’s my sister, who offered to come wait with me in the ER the other night so my mom could go home, and who was up at 1am texting me to see how I was doing and making sure everything was okay. And then there’s my brother, who came to the ER at 10:30 at night so my mom could go home, even though he had been up at 4am for work, had only just returned home from two weeks working up north, and had to miss an end of exam celebration with his engineering friends. And there’s my brother-in-law who picked me up in the middle of the day yesterday and drove me back to the hospital for an ultrasound.
Then there are the countless villagers who show their support in other important ways. Like my aunt, who always emails me to say hi and see if I need anything. My best friend who listens to all the TMI details of chronic illness and always helps me find the humour in it all. There’s my old-coworkers-now-friends who continually check in with me to make sure I’m doing okay. There’s my support group of gastroparesis sisters who, no matter how sick they are or how much they are dealing with in their own lives, never fail to send me love and wish me spoons, including one who actually sent me a picture of her family’s antique spoon collection when I really needed the extra energy to get through the day. And my friend in Saskatchewan who sent me a just because care package in the mail. And my elementary school teacher who dropped by last week with flowers for my room. These are just a few examples, but there are countless more that I can’t even begin to list. I have been shown an overwhelming amount of love and support over the last little while. Almost every day, in some form or another, someone lets me know that they are thinking of me and that is a huge part of why I am able to maintain hope and smile through all of the yuck.
My village includes a great team of medical professionals, a team that continues to grow! Like my GI who said I looked exhausted, and the TPN doctor who I had never met that said I looked really unwell. This might seem counter-intuitive to you, but for me, hearing that I looked bad was a huge comfort! It meant that I didn’t have to try and justify how poorly I was feeling. And as opposed to when I hear that I look good, I didn’t have to smile and say thanks, knowing it was a big lie. There’s the internal medicine doctor who spent close to an hour taking my history last week. In the end he couldn’t do much for me, but I felt heard. There’s even the medical imaging receptionist who let me skip the waiting room yesterday and instead go lie down on a stretcher in the hallway outside of ultrasound and wait for my test there.
And there’s you, you reading this right now, because by reading this you are giving me a voice, and a purpose, and you are making me feel less alone.
So here’s to my village. My whole village. My family and my friends, and friends of my family and friends. Fellow spoonies who I’ve never met face to face but who know me inside and out anyway. My health care team that never stops fighting to help me see better days. People I encounter only once but whose kindness leaves a mark, who won’t remember me at the end of the day even though I will remember them. And everyone reading this.
My life is better because of you.