At first I was going to write a love letter to you, but as the weeks went by and things got worse I realized, that perhaps dear body we needed to step up our game. Perhaps I needed to write a negotiation letter.
See, you kind of have my body under hostage and I don’t particularly appreciate it. I understand I may have not been the greatest at taking care of you, I wasn’t the most loving towards you, and I certainly could improve. But I’m willing to change and meet you halfway. However, you seem to be having none of that. I try to give you medication to help you stop fighting and instead you fight back harder. I try to go to bed early so you can properly rest and instead you decide I need to be tired all day, but at 12 am I need to be wired like I just drank 3 cups of coffee. I try to eat healthy and provide you proper nutrition but instead you make me sick and poop this out immediately but seem just fine when I feed you a hamburger.
Give me a break! What do you need? Please tell me, I’m a little lost. And as I get more lost trying to navigate through all this, I get more stressed and we all know how well we both handle stress. Here’s a hint: we don’t.
So what do I do? I am trying really hard to love you better. We had a good start a couple years ago. We had a moment of rediscovery. Took time to travel, learn how to create our identity, reprioritize again, and make “healthier” habits. I learned how to embrace our quirks and oddities (although the snorting when laughing was something I wasn’t enthusiastic about), I felt more confident, we were sassier, and for a moment we didn’t care what people thought! We did things because we wanted to and that’s what made us happy.
Then we got sick. Now I don’t want to blame you, buuuuuut body, and autoimmune disorder means you are attacking yourself. And you know what, I get it. I am the first person to rip you apart and rag on you and I am probably the hardest on us. And I don’t know why, I just do it. And perhaps that’s what’s happening with you, because no one knows why you’re doing this either and that’s made getting better a bit of a challenge.
But we have to get better. We can’t keep going at this rate where we start off good and then kind of fall off the map. Body, you realize if we keep doing this we will have to lose our colon and bowels…. I mean I am not the fondest of them either, especially lately but I don’t think we need to exile them from our body. I am not crazy about a Barbie butt. We gag doing a stool sample test, never mind cleaning and changing a bag…… so keep this in mind please. I mean I can ask Santa for maybe a nicer newer set next Christmas, but I don’t see that really happening so we have to work with what we have (and as great as Costco’s return policy is, they weren’t willing to exchange our body so we are also stuck with each other).
I am really trying to love you better, to better support you through this tough time. But I need something in return as well. It’s so hard to love you when you seem to make everything a challenge you need to accept! Rare side effect- don’t worry I’ll make sure you get it so you know what it feels like. No body, make it easier on us! I had to wrap up my foot in a tensor bandage because you are attacking the joints so bad in my foot that we can’t walk on it properly without limping like we twisted our ankle, and no amount of massages, medication, or natural remedies seem to be helping with the pain. I know you’re missing Prednisone, but we got to let it go. It’s causing us a lot of pain too. It’s a toxic relationship at this point.
It’s also really hard to love you as I watch you change so fast. Too fast and I have no control over it. There are very few things we have control over in life, but I was always told that the one thing we always had control over was ourselves. Well jokes on me body, I also lost control of myself. You seem to have your own agenda of how we are physically and mentally changing.
For years we have tried to gain weight together and now you’ve decided I needed to get sick and go on steroids before we could gain weight? I mean I’m okay with the body weight gain, but again Prednisone has got to go. Moonface is not my jam. We already have a baby face and this is just not helping our case. And couldn’t we have agreed to gain weight in a healthier manner? Did it have to be Prednisone and 4 am hunger pains?
I have even felt like I have lost control of my own mental thoughts. I become sad for no given reason and can’t seem to talk myself out of the funk. I am constantly fatigued and get winded some days from simple things like showering. I am so forgetful nowadays and feel like a scatterbrain who is lucky her head is attached to her neck. Anxiety is something that seems to be getting better, but again, the depression side effects are really weighing us down. I think that one has really torn us apart and makes us grow further apart. Some days I feel like I stare at you like you’re a stranger I don’t recognize. You have given me so little to control over ourselves that I’m left here feeling like a hollow shell just moving through the day like a robot on auto pilot.
I walk around egg shells with you because I feel like I never know what will set you off. One minute we are happy clams enjoying our day, and the next minute you decide in the middle of the grocery store would be the most appropriate time to ignite my bowels. I’m afraid to make plans or go out anywhere that doesn’t have a public washroom nearby because already last week again you reminded me that I don’t even get to control my bowel movements (public poop attacks are never okay body, come on! I thought we were passed that). I feel like a terrible friend and girlfriend. I’m so hot and cold, I’m so tired, I have no sex drive and even when I do you make sure we can’t (like when you thought spotting for 5 weeks was a grand idea), I want to be adventurous but you want to be elderly like, and I’m so forgetful and wrapped in my own problems that I feel like I don’t help my friends as much as I used to.
So where’s halfway? I am taking you to a support group. Help with our mental issues and maybe get that back on track. And then we are going to an information seminar about UC and Crohns, because knowledge is power right? Maybe I’ll stop looking at Instagram photos of pretty girls and feeling sorry for ourselves because I think we don’t look pretty anymore. Maybe I’ll start doing some positive affirmations to tell us that we are pretty, we are strong, and we are good enough and smart enough. We are in this together. And maybe in time we will both believe it. But you, you got to work with me too. We are seeing our doctor Thursday and you need to get it together and decide if we can keep tapering off Prednisone with as little problems as possible (like no more oral yeast infections) and to start responding better to Humira. Please?
You are my body, and at the end of the day we are in this together. SO let’s try and work together for once instead of turning on one another.