Crohn’s Disease forces alot of people to cease the day and carpe the diem out of the days they have when they feel well enough to function normally.
I never used to be one of those people; I suffered greatly with my depression and my acceptance of my diagnosis. These days, I try to do my best to manage my time and disease as best I can. For the most part, I succeed. I have a job and two volunteer positions. I like alot of what I do and what I find out through doing those things. I enjoy learning, I enjoy helping out people for no financial benefit. I believe in giving “it” back; that if I am a good person and do good things, I might just survive Crohn’s Disease without too much trouble.
Sadly, I am without medication. And I am suffering.
Me and the Pred are having a battle of royal proportions.
This time around I was prepared for the Pred and its side effects. I was prepared for the tablet taking and the hot flushes and all the manic eating habits and insomniac nights. I just wasn’t expecting to still feel like shit whilst on them, I was expecting my depressive mood swings to kick in just a week in and almost ruin my wonderful relationship.
How my boyfriend puts up with my constant shit (both literal and metaphorical) is beyond my comprehension. How he finds the calm words and general lovely demenanor to come back every night is a miracle. And yes, I have sometimes taken that for granted. I am trying my best to mentally and physically prepare that man for the depths of a flare up and many many problems that my Crohn’s will bring out, in time to come. I just forgot to prepare him for me being depressed as hell. We’ve both known a couple people who are getting married, having kids or both, and more have announced their lovely life plans in the past 10 days. It is awfully cheerful and provided me with some food for thoughts. What exactly am I doing? Where am I going? What is the most exciting thing happening in my life? When will I get good news?
Sadly, I couldn’t find an answer. Not a good one, anyway. I am currently in a flare up (or whatever these doctors and nurses of mine think I am going through, but more on that later…) and reaching a milestone birthday (25 in April) without a proper job or a place of my own. I got a little upset, I admit. And I lied. I pretended to be happy when I wasn’t. I shut down and shut him out. The one person who I expressively tell everything to, I just stopped talking to. For anyone who knows me, that is a hard thing for me to do. I caused arguments and a rift between us. Pointless and stupid and utterly hurtful.
Words were said and hearts were hurt.
A week on, and things are better but not the same. It’s like we have changed but we both don’t know if it’s for the best yet. We still love each other and don’t want to give up on what we have but we wont ever be able to solve the problem of my disease. We can only try our best to reach an understanding – something that will always need readjusting when my symptoms and condition changes. It is hard work. It’s a battle. Not only for me and my own body but what my emotions do to everyone else. What shitty medications like Pred and Mercap do my mind. I dread to think the effects they have on my body…
So we sit here on a Monday afternoon, 24 hours away from a hospital appointment where my medical team are suppose to have a answer to the failed Mercaptopurine problem.
I wonder what they will do next. I’ve been lying awake at night – half through hunger pains and insomnia and the other half with worry – about what they will say. Will I go back to Humira? Will they persist with the stupid notion of an Aza based medication that makes me unable to walk? Will they try a new medication such and Infliximab or Methotroxate? Will Pred be more long term that we thought last month? How do my current symptoms reflect in this? How have the determined I’m in a flare up and in need of Pred for 10 weeks, when my bloods haven’t shown too much of a raise in inflammation markers?
The bottom line is the fact that I dislike the fact that they want me in for a new medication but have yet to explain what the long term effects and plan of these ideas are. I wish they would explain what all probabilities are! I wish they were more honest with me! I am 24 years old, I am not a child and I can take a brutal talking to about my disease and the condition it is in!
Right now, I see my disease a big mess. When in reality it isn’t all that big. I am still able to go to work and I am still able to eat. Until both of those things go tits up, I consider myself to be lucky. But, despite that, I find Crohn’s to be a big stumbling block in my life. I had thought once, I was over my non acceptance of what I couldn’t and couldn’t do with Crohn’s in my life, but sadly, as the medications and symptoms have changed, so had my mind set and my ability to do things; or in some cases, inability.
It is a constant flux.
This week for instance, I’ve been able to go about my work and Brownies commitments whilst feeling incredibly sick. But, I do that out of a sense of obligation to myself. I complete my shifts at work with a sense of satisfaction and pride. I do the same when we all complete a Brownies session on a Wednesday evening. Everything else, I put on a back burner when I feel unwell. I know that much, already. But when my Crohn’s starts to interfere with my “normal life” I find that hard to bear. It feels like a huge burden, a heavy weight on my shoulders, that I am yet to find balance with or to.
So, a waste of week. Another seven days of my life of Pred and without answers: to my meds, to a new job, to moving forward. It’s been a write off.