About Ulcerative Colitis · Personal

Where did time go?!

Holy smokes guys,

How has it literally been just shy of a month?! Time has FLOWN by. I am down to 14 days left of work before the summer holidays (working in a school perks). I knew I had been slacking a bit, but I didn’t think a whole darn month had gone by!

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My new hair that I am slightly obsessed with

But the good news is not much has changed (but I did get a new do). I am down to 1 pill of prednisone and on Thursday that will be half a pill (2.5 mg). I am beyond excited to get off this bad boy. The withdrawals have been kicking my butt, but we have gone through worse. I mean it’s there, but tolerable. Mostly head aches, the shakes, hot flashes, nausea, a cute eye twitch, and pain around my chest here and there (but not exactly chest pain- idk how to explain it). I did experience that lovely feeling where your body shocks itself so that is always pleasant, but I tell myself it could be worse.

Today was rough. I spent most of the night tossing and turning due to body aches (much like when you have the flu) and woke up in a complete fog. My head felt heavy, I had this pounding head ache that resulted in an overwhelming feeling of nausea and the body shocks were quite prominent this morning. I would go from being so hot and uncomfortable with any clothes touching my skin, to chills in minutes. This morning there was no happy medium. Now it is late afternoon and I finally feel like my body has regained some control. A part of me wonders what it will be like once I am completely off because I know some of the symptoms subsided as soon as I had prednisone back in my system.

The hardest part thus far is the fatigue. I have 0 energy ever. I feel like no matter how much sleep I get, I am always starting at about 35%. I can not stop yawing and I am trying SO HARD not to because I work with kids, but I just am so exhausted. And then what’s worse is as of late insomnia has been kicking in. So ALL DAY I am pushing myself to get through the day and then I crawl into bed and I am wired. I shut off my phone, I try getting into bed earlier, I try drinking hot beverages before I sleep, I try reading. Nada. Just toss and turn.

14 days guys, 14 days. Then it won’t matter. I can be a vegetable all day if I need to and hopefully once my body figures out we are not going on prednisone I can get back to being me.

And yes guys, the moon face is going down. Thanks for asking. I am PUMPED. And We did a celebratory dance for being able to continue staying at 104 pounds.

So there are still PLENTY of reasons to celebrate. I have really only missed maybe 2 days of work in the last month due to weaning which is huge because last year I had to take a week off (which turned into 2 months unexpectedly due to my accident) and the year before that my work forced me to take a leave of absence (I was in denial and so stubborn) because I was a literal zombie and my manager spent more time worrying about me getting through the day than perhaps doing what she needed to. So 2 days isn’t bad. My bowel movements have not really changed much since coming off of prednisone, which is huge. The only day that was rough was Sunday but it was that FEELING of needing to go and when I did it was just gas or a little nugget, which told me it was stress related. And in hindsight, it makes sense. I was stressed, in a good way- but stress is stress. I had a presentation and hosted my very first event as YEG Wellness Collective with my best friend and I was nervous. But it went so well! But I paid for it and yesterday I mustered all the strength I could to do my job and when I got home after physio I cried and slept for an hour in hopes that my head ache would numb itself out. But today, I just couldn’t push myself. By body was screaming and I needed to listen.

I do fear for the future. I’m at this fragile tipping point where everything is going so well and there is a lot of pressure riding in this last 5%. Obviously it’s the final hurdle in hopes of achieving remission, but there is still so much I don’t understand about my body and so much that can trigger a flare in parts of my bowel that are considered endoscopically and clinically in remission. So for example, on Sunday when I felt like shit I had this fear and internal anger at myself for not knowing better and allowing myself to get there. And a guilt for worrying others around me. And today I thought, it’s not my fault. I am learning day by day and unfortunately I cannot make all stress disappear. It is a part of life and I have to learn how to better navigate it yes- but sometimes we learn through mistakes. I will get stressed. I will get emotional. I will experience difficult emotions such as loss. I will eat something funny. I will drink too much caffeine one day. I will have days where 4 hours of solid sleep is unfortunately all I got for the night. I will pick up the cold or a flu. It’s life. But I will find a way to get through it and I will continue to grow and learn to nurture my body. So today we built up my strength to hopefully get through the week and tomorrow is a new day. Heck the next hour is a new hour. It’s still always changing.

But I will get better, because I REALLY want to go to Europe at the end of August with my brother and then get to see my bestie. That is the goal people.

But I am learning to accept what is within my control and what is not-and my health tends to not be. So one step at a time. First step, off of prednisone. Then we go from there.

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Just two IBDers who didn’t poop themselves on the walk

On a quick side note I just wanted to say that the Gutsy Walk went so well and I wanted to thank everyone who came or donated to the cause. So fare we have raised $2.9 million dollars and the official end date to donate is July 5th! You can donate or find out more information at https://gutsywalk.ca/Home.aspxΒ 

Until later (and hopefully not another month),

Bee.

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