Thoughts on How to Deal With Difficult Times
Inflammatory Bowel Disease (such as Crohn’s Disease and ulcerative colitis) can cause a tremendous amount of emotions. That is probably the understatement of the century, actually.
Having any kind of chronic illness can make you feel scared. It can cause anger. It can cause feelings of guilt. Unpredictability about the future is often hard to handle. Feeling isolated and alone are frequently felt by many IBDers. Losing friends/people in your family or withdrawing from them because they don’t really understand and it is better to just stay away than deal with it is also a common occurrence that many people with inflammatory bowel disease have to deal with. Not being able to eat and drink whenever you need to or want to and worrying about having accidents is a terrible thing to have to even think about. Difficulty sleeping can wreak havoc on anyone, let alone someone who needs it that much more for physical and emotional reasons.
I could go on and on and on and on and… but you get the point.
I am not trying to be Negative Nelly over here, but like I have continuously said throughout my previous articles and bio: I am someone who hid who I really was with the world for so many years because I was afraid I wouldn't be accepted. I was "fake Marisa" for so long and only was able gain the confidence to share who I really was when I began reading things that made me feel less alone. It showed me what I always knew but sometimes doubted which was that I was not “crazy.” When others acknowledged that while we shouldn’t just sit around feeling sorry for ourselves, these things ARE occurring, they ARE serious, and they ARE impacting us, it had such a profound impact on my life.
So, these emotions need to be acknowledged and (if wanted/needed) talked about. I always want to be here to validate your feelings related to having such a debilitating disease like Crohn’s Disease or ulcerative colitis. The impact this disease has had on me… and my loved ones… has been something I haven’t fully even grasped yet. Or, I don’t want to.
My other reason for wanting to talk about this is to share some of the things that I tend to gravitate towards when I am going through a lot. Here are the top five things I have found to be helpful for me personally.
1. I need comfort and I need to feel safe and secure.
Being vulnerable and defenseless has always been one of the things that greatly impacts my emotional well-being. So, I do whatever it is that will make me feel that way during that specific time. It isn’t always the same. Sometimes, it is laying in bed all day wrapped in blankets and surrounded by my favorite stuffed animal and dogs. Other times, it is doing things around the house while wearing my most cozy pajama pants, fuzzy socks and slippers. This makes me not only feel productive, gets me out of bed and is just good for me overall, but it reminds me that I am home and “free.” I always felt like a true prisoner in the hospital.
2. Watching television shows or a movie that I can engross myself in that has absolutely nothing to do with what I am dealing with.
Some of my go-to shows lately are reruns of Friends, How I Met Your Mother, Two and a Half Men, Charmed and Modern Family. My usual go to movies are Sex and the City 1 & 2, Meet the Parents, and Meet the Fockers.
3. Being around my dogs.
There have been so many times when I didn’t want my girls in my bed with me because I wanted to know I could position myself anyway that was comfortable for me. I have such a hard enough time getting comfortable and sleeping as it is that I even need the option to lay diagonally if needed! There are times when kicking them out works to my advantage so I definitely don’t advocate not trying to sleep or rest alone if you are someone who is usually surrounded by your pets.
On the other hand, they are so calming to be around that it just makes my whole body feel more relaxed. On numerous occasions, I went from not being able to sleep alone to finally letting my girls in, only for me to be so close to them that I felt “safe" enough to let my guard down.
4. Talking about how you are feeling; even a teeny, tiny bit.
Or writing in a journal. I started keeping a journal a few months after I was diagnosed with ulcerative colitis. I documented every single thing that that happened when I was in the hospital or had any appointments. I also use to literally recap most of my day. If I was too sick to write or the IV was in a bad place, I would even dictate things to my mom and she would write them in my journal for me.
As the years went on, I think there was just so much and writing it down made it more real. Given that, I do understand if you aren’t in that place where you can write and own up to certain situations and/or feelings. But, I do believe that even something as simple as saying everything you are thinking and feeling out loud - even alone- in whatever manner YOU wish to say it in. Whether it be: screaming, yelling, hysterically crying while saying it, speaking about it while in bed, in a car, in the shower…. Whatever helps you the most.
I just feel as though it is so incredibly crucial that you can say certain things without holding back whatsoever. Not all the times by any means. I don’t think someone should harp on things- although understandable if that is all a person can think about given how potentially life altering so many IBD related situations are - but I do believe emotions always have a way of showing up. And it might come out in the wrong ways and/or towards the wrong person(s)
5. Doing whatever I can to make myself as comfortable (mentally and physically.)
I believe most of us suffer enough so why add to it? I respect everyone’s right to not want to deal with symptoms with medication and if I had that option, I would take it in a heartbeat. I know most of you would. But given I (and I am sure so many of you reading this) don’t necessarily have that luxury, I take pain medication when I need it and have it (pain control when it comes to those of us with IBD is a whole different article!) I eat comfort food (when able to) when I need it and do my best to make sure it has the least amount of impact on my stomach. Doesn't always work but when comfort food is helping so it is worth paying the price the following day sometimes.
Another example is, if I know a medication I am going to be on might cause certain side effects and there are things I can do beforehand and during to possibly help the situation, I do my best to be on top of it. Being sick doesn’t always leave you room to run to the store and do a bunch of errands which are often needed in this case, but I do the best I can - like all of us. I try to stock certain things I have noticed have helped in the past so even if I can’t leave the house, I am covered. For example, I am sure to have things with prebiotics and probiotics in case I need antibiotics which occurs often in IBD patients. I also am sure to have decaf coffee and diet caffeine free Pepsi in case I eat something that I feel should be flushed out of my system as soon as possible.
There are a lot more things I could talk about, like how much better I always feel when I am around the few people in my life who actually get it. I just wanted to bring up the fact that intense emotions are so common and incredibly NORMAL to have with this disease; especially a severe case that has you needing ongoing, invasive care, and are beginning to feel like no matter how much you pray, think things are going to be different this time around but continue to be let down.
I have said it in other articles and I will say it again right now and I am sure a billion more times in the future… it would be weird if your head and your heart weren’t filled with a wide range of emotions. And while I understand that sometimes it is only at certain points that a person can really let go a little bit and express some of the emotional things they are experiencing (ex, after a crisis is over,) I just don’t want any of you to overlook it or feel like there is something wrong with you for feeling so much. You are so far from alone on this one.
Please do whatever you can to keep yourself as comfortable as possible.
I am learning that I have to get over the stigma of watching TV during the day. I still haven't been able to turn it on before 5pm but it is a work in progress-- like all of us. And it is OKAY to do things that aren't the "norm" or that you wouldn't do otherwise if you didn't have a chronic illness.
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