“As long as there was coffee in the world, how bad could things be?”
― Cassandra Clare, City of Ashes
Hello, dear readers. It’s been a long while since we’ve sat and had a chat and I should start by making my apologies for that. I wanted to be here, and I am sorry I couldn’t. I couldn’t write. I couldn’t do anything. BUT I am back now, or, I hope I am back. It may take me a while to get back on a schedule so let’s just say today I am back, and I hope to be back tomorrow too.
If we were having coffee, I would tell you that since out last chat so much has happened, I am unsure where to begin. I believe that was just after my doctor’s appointment. I went in for joint pain and previous stomach issues. I explain to them that for my whole life I had experienced, off and on, bouts of extreme pain and other unpleasant and TMI symptoms that I’m sure you don’t want to hear about over your coffee.
He sent me away with a referral to the gastrointestinal department and assurances that it was probably irritable bowel syndrome.
Since that appointment, when I was experiencing very mild symptoms, I went down hill very quickly. I was worse than I had ever been. I couldn’t eat. I couldn’t sleep. I was a ball of anxiety and pain and frustration. I cannot begin to tell you how scary it was watching my body fall apart this way.
I set up an appointment with the GI department, but the soonest I could get in was February 14th. Yes, I spent Valentine’s day sedated while a doctor took pictures of my colon.
If we were having coffee, I would tell you that despite that, and somehow because of that, it was the sweetest Valentine’s day my girlfriend and I had spent together in all of our nearly 15 years together.
I remember none of the procedure and very little about what happened immediately afterward. I know that my girlfriend waited for me in recovery. I know she helped me get dressed and helped me understand what the doctor and nurses were telling me afterward.
She helped me through the preparation and took care of me afterward. She had been so supportive, sympathetic, and understanding I was nearly brought to tears the way she took care of me. She brought me home afterward, fed me, and put me to bed, just what I needed. She went to work while I rested and when I woke she was on her way back home with pizza, chocolates, and strangely, new bed sheets with phases of the moon on them. Probably the weirdest gift and the cutest gift I’ve ever received. Here’s what I wrote for her on Facebook:
I wish this Valentine’s day could have been all flowers, and chocolates, and fancy dinners but when you’ve been in a relationship for a long time you know it can’t always be that way. Today I spent the morning in the doctor’s office and the love of my life stayed in the waiting room until I was out of sedation. She helped me get dressed, helped me understand the results of my tests, took me home, made me a little lunch, and put me to bed. That was the best Valentine’s Day I could’ve hoped for. Real love is being there for someone when they are sick and never making them feel like a burden or an annoyance. It’s letting them do what they can and helping them when they can’t. It’s worrying about them, comforting and supporting them. It’s making sure I take my meds, eat the right foods, and have plenty of fluids. It’s helping me figure out what’s wrong and then helping me get well again. Thank you [honey], for everything you do for me. I know the last few weeks have been tough and you are feeling stressed but just know I appreciate you being here so much. You are the the sweetest and kindest person I know and I’m so lucky to have you in my life. Happy Valentine’s Day baby! I promise when I’m feeling better we will celebrate it right.
If we were having coffee, I would tell you that the diagnoses wasn’t IBS, turns out, I have ulcerative colitis. Which means my immune system just doesn’t know when to stop. My body thinks that food and beneficial bacteria are foreign invaders plotting to do harm to me and so they have gone on the attack causing inflammation and ulcers. I’m grateful those little white blood cells are trying so hard for me, but I wish they’d learn what is meant to help me and what is meant to harm.
I still have to go back to the GI department for a chat about what this means and what treatment will look like, but from the research I have done, it seems this will be a lifelong problem. I hope the symptoms will come less often and go more quickly if I keep on top of whatever plan they have for me.
For now, I am on steroids to suppress my immune system and reduce the inflammation. It’s only day two, and I’ve already noticed a difference. I am hoping by the end of the week I might be feeling more like myself. Able to work, write, and do my part at home. I hope I can have the energy to get back to doing the things I love and taking care of the people I love too.
If we were having coffee, I would tell you that while I was not doing so well physically, it was the psychological effects that took the biggest toll. My body was betraying me. My body wasn’t mine. My body was getting in the way of everything my mind knew it needed to do. I wasn’t myself, and I was afraid I would never be myself again. I have never spiraled into a depression so quickly before. I was in tears every morning and night from pure frustration and exhaustion. I stopped talking to anyone.
The worst was not being able to write. I have fallen so far behind and it feels impossible to start again. I’m going to try, though. Slowly at first sure, but I am going to try. I want to go back, as much as I can, to the way things were. Even when I had been sick in the past, I could push, though. I could hide. No one knew I had been suffering on and off the way I was. I wasn’t so bad. I was still me. Not anymore. Everything seems changed now.
If we were having coffee I would tell you that this has been some heavy conversation for what was supposed to be a light chat over coffee, I’m sorry. I felt you should have an explanation, and I needed to get it all out. I needed to say what has been happening to me and how I have been feeling. I hope to say more in the future but talking about chronic illness and particularly one that affects the bowels is hard. Part of the reason I never got help before was feeling so much shame. Shame, and our terrible healthcare system.
Don’t get me started on the healthcare system.
If we were having coffee, I would tell you that I have to get going. I gotta eat, take me meds, and find the energy to do a little cleaning and visit with family. It was great to catch up with you all. I missed it more than I even knew. I promise next week will be more cheerful.
I hope you all had a good week, a good few weeks since I last spoke to you. Please, leave a note below and let me know how you are holding up.
Until next time :)
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Featured image via Unsplash