Someone recently asked me to blog about how do I live with Crohn’s and the other chronic illnesses that I have. Specifically, they wanted to know what life looks like going forward now that I have seemingly accepted my diagnoses. That was a very interesting question…a challenging question. I wanted to take a few days to really think about my answer.
In short, life with with my chronic illnesses and pain going forward will be fine…because it has to be. Translation, life with all my chronic illnesses going forward looks challenging, overwhelming at times, frustrating, uncertain, scary, but, despite all of that, hopefully filled with lots of days above ground with as many of my original parts as possible. See here’s the thing, while I have decided to be optimistic…I am very much a realist. By nature I am not an overly optimistic person…but I have never been deemed a pessimist either. I honestly think most days I fall somewhere in the middle. Now, there will be days where I will swing to a particular end of the spectrum, but for the most part I fall in the middle. Today friends, I am pointed towards the direction of annoyed and simply over chronic illness…specially Crohn’s.
Think fast, what are you “over” right this minute? What situation or person in your life comes to mind when you think about being “over” something. When you say “I am so over this”, how exactly do you say it? I know, these are very odd questions. But, I assure you there is a method to my madness. Now seriously, have you ever just thought to yourself, “I am soooooooo over this”? I don’t know what it is, but when I am truly trying to show that I am over something, I add extra “o”s. Yes, I know it’s not grammatically correct; but its my thing. Seriously though, when I want to show that I am seriously over something I drag out the o. It is almost as if my mind says that the longer I can hold the o, the more I am over it. Yes friends, I know it makes absolutely no sense. Frankly, saying “I am so over this” with 2 or more “o”s actually means you are not over it. You’re welcome!
Recently I have been having a very tough time with my health. In a very short period of time, I have experienced 2 severe Crohn’s flares. In fact, as I type this post, I am pissed because I went to the bathroom just now and was once again greeted with severe pain and bright red blood. In addition to all that fun, I also started a new medication, physical therapy, and pain management. While I believe I am taking everything in stride, I am tired.
As I laid in bed early this morning unable to sleep and reflecting on my recent 6 day hospitalization for a pretty bad flare, I realized that I am over this whole Crohn’s and chronic illness business. Candidly, at 4am this morning, Crohn’s could kiss my a#!. I was over the pain from this awful disease, the missed events and opportunities, the required medications/toxins (yes, I deem chemo meds toxins), the insensitive reactions I get from strangers or medical professionals based solely on my diagnosis, and self credentialed doctors without actual medical degrees. Simply put, I WAS OVER IT!
Now, before you get all worked up and call the suicide prevention hotline, let me clarify what I am saying. To cut to the chase, I was overwhelmed, but VERY MUCH determined to remain on THIS side of the dirt. But, experiencing the rough times I have had these past few weeks showed me something very interesting about myself that I needed to share. Despite my attempts to remain positive, meditate, embrace the setbacks and triumphs, laugh, and everything else, this life with chronic illness and pain becomes a lot some days…even for me. BOOM! Mind blown? See, I am human just like you. I get angry, tired, overwhelmed, stressed and everything else. My life with chronic illness and pain is not all sunflowers and unicorns. I have some emotionally exhausting days, week, or months sometimes.
Here’s the kicker though friends, while I allow myself to feel overwhelmed and any other emotion that comes flying at me like a brick to the face, I never stay in that state long. I promised myself that I am allowed a certain amount of days per year to mope, cry, be pissed, or whatever else I feel…but that is all I get. No, I will not tell you exactly how many days I have given myself…because the number doesn’t matter. But, I have set healthy limits on my moping. Now, while I have limited the amount of days I get to mope, I have not limited the day itself…well except that it has to be constructive/healthy. On my allocated day, I am allowed to pretty much do whatever I feel. That may be staying in bed, writing a hateful letter to my diseases and setting the letter on fire, crying, blogging, or etc.
Today unexpectedly became one of my permitted days. I said I was over the pep talks and positive words. I was over smiling through the pain, laughing to keep from crying, speaking positive words into the atmosphere, and everything else. I planned to allow my self to grieve and verbalize all my frustrations…and I did just that. Problem was, by 8am I was bored with moping and needed something else to do with my energy. Stupid insomnia ruined a perfectly good mope day. See, my permitted day started at 12am and continued on until 4am because of my insomnia. I dosed off at 4am and woke up at 7:30am…hungry and completely clueless as to why I had chosen that day to mope to begin with. When I dosed off at 4am, I had decided Crohn’s could kick rocks with no shoes on…but at 7:30am, all I wanted was bacon.
What is the point of this? Well I am so glad you asked. I have no idea what life with chronic illness looks like for me going forward…I haven’t lived it yet. But, there are a few things I do know. One, I will have days where I am mad at my raggedy body, freakishly strong immune system, and these hateful diseases. And friends, that is perfectly fine. But, even on those days, I will STILL be so very happy to be above ground. So, I will force myself to celebrate and enjoy the positive moments that come along with the bad ones…that just might take place on separate days. Two, while I am happy to be above ground, I still VERY MUCH intend to allow myself to feel every emotion that comes, and will not apologizes for it. So, I will laugh when I want, cry when I choose, curse when I want, do something high impact to burn my negative energy, and anything else I choose to do. Basically, I removed most of the restrictions I once placed on myself regarding living with my illnesses. The only absolute now is not to mope too long, and as long as God sees fit to keep me here, I will get up every morning that there is breath in this body, put one foot in front the other, and LIVE. I can’t promise to do it a particular way or even describe what it will look like for me to “live”, but once I find out you all will be the first to know. Third, and finally, I plan to keep talking and sharing. My life with chronic illness and pain has been full of adventure, and I don’t see that changing. So, as long as one person reads and is helped in some way, I will keep sharing/writing.