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What Day Is It?? Distorted Time with Chronic Illness

Do you ever feel like time is all distorted because of your inflammatory bowel disease (IBD)? It isn’t so much that I don’t know what day of the week it is, or what season it is so much as things just seem to be continuous with no end or break. This is obviously more of the case for those who are not particularly doing well with their disease.

Some possible reasons for this feeling:

Sleepless Nights.

So many people who suffer from Crohn’s Disease or ulcerative colitis experience at least one bout of bad insomnia or painsomnia. For me, I am lucky if I get four hours of interrupted sleep. I know the same is true for a lot of you reading this. I can’t stress enough how much this disturbs my health so you are certainly not alone if you feel this way too. Not sleeping or having weird sleep patterns can make things seem like one continuous day or your internal clock becomes so messed up that you end up becoming nocturnal. This impacts productivity and just a general sense of feeling like a normal, productive member of society. Or human being, for that matter.

Special Occasions That Cannot Be Celebrated.

Oftentimes, those of us who suffer from an unpredictable chronic illness like IBD (inflammatory bowel disease) miss out on special occasions. Whether they be birthdays, weddings, funerals, holidays, reunions, etc it is a difficult thing to grasp emotionally. But not only that. These special occasions represent markers in our lives and in our years so without that celebration or real acknowledgment, it can change the way we view time in a sense.

Barely Being Able to Get Out of The House.

For those people who are in the midst of a bad flare up, dealing with abscesses and infection, are recovering from surgery, dealing with extra-intestinal manifestations of their inflammatory bowel disease or who are just symptomatic in any way, leaving the house becomes increasingly difficult. We have little energy, can barely shower or do basic things to keep ourselves looking and feeling human, and just flat out cannot bare the thought of being out in the world pretending to be feeling fine when there is so much pain and anxiety inside. Plus, isolation sinks in which can cause someone to be even more depressed and anxious.

Bottom line: this cycle of never leaving the house, rarely bathing or changing out of pajamas can really warp a person’s sense of time.

It is amazing to me how quickly time passes and when I go and look back, I realize I missed out on an entire season because of my health!

Do you guys ever feel this way?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (5)
  • thedancingcrohnie moderator
    5 months ago

    Yes! I can so relate to this. During a bad flare that lasted months, it was like time just sped up for me. I would be cooped up in the house, miserable and in pain. And the days seemed only a couple hours long. Before I knew it, a month would pass and it would actually scare me how quickly time was just passing me by. I felt like I was just wasting away sometimes.

    Always dancing,
    Elizabeth (team member)

  • dave-ten
    2 years ago

    I feel like you have “spoken my mind” on this issue. And it *is* an important issue. As far as I’m concerned, being isolated is one of the tougher aspects of Crohn’s — and I’m about as introverted as you can get. I think you did an outstanding job describing and defining this under-recognized aspect of Crohn’s.

    I’m just passing the 60-year-old milestone and have had Crohn’s for 43 years. About halfway through this journey I developed pleurisy and pneumonia, and found that I also have something called Sjogren’s Syndrome, an autoimmune disease similar to lupus without being as destructive. Still, I managed to string together enough lucky remissions and stubborn willpower to finish college, get a great job, have kids, and endure several surgeries.

    My pulmonologist diagnosed me with Delayed Sleep Phase Syndrome. I live in a way that Count Dracula would approve of — mainly at night. It’s not a matter of preference. I can’t sleep at night. And I fall asleep and sleep pretty well starting at about 6 AM. My GI doctor, who saw me through so many crises, said that in the 45 years he had practiced, he had never treated a case of Crohn’s Disease of the lung, but that he felt comfortable concluding that this DX fit me perfectly, including the messed up sleep schedule (which has a tendency to either fragment or drift during Crohn’s flares).

    So, I went to a sleep clinic and actually got into an argument with the doctor — a very friendly argument, mind you — about why I can’t do their 24 to 96 hour sleep test. They are trying to diagnose me with sleep apnea, which I may well have, but I have so many other very pronounced respiratory symptoms that I doubt it. Since 1995, I have had pneumonia more than 50 times under the general diagnosis of Crohn’s-related bronchiectasis, a condition where the bronchial tubes — from large to microscopic — have lost their muscle tone and swollen. It’s very much, on a functional level, like the lung symptoms of cystic fibrosis, complete with the scarring that occurs after episodes of pneumonia or bronchitis.

    But what spooked me about the “sleep study” isn’t even related to sleep. I’m sure, from decades of experience, that I will have a number of episodes which are “normal” for me — cramps, a need to get to a bathroom quick, you know the drill — but which others without Crohn’s can’t understand. The sleep specialist said that depending on the time of day, there might only be one or two staffers present, staffers who would have to hear my call, get to my room, and spend 10 minutes or unhooking me from the monitors that they stick on from head to toe. Could I wait that long? Probably, but who knows. There are times when I’ve been awakened by my gut and had no more than a matter of seconds — a minute at the most — to make it to what the Chinese refer to as the “greater convenience.”

    I just don’t want to risk it. I’ve spent so much time making excuses and trying to explain why someone who looks relatively healthy (which I do) would have such an array of health problems and dire symptoms.

    And the thought of wearing one of those CPAP machines? OK, I’d try it, but only if they develop one that looks like Wile E. Coyote’s schnoz after he’s run into a fake tunnel and his nose resembles an accordion. Or something equally appealing.

    I wish you well, and I wish the best for all here. If you’ve read this overlong, and probably boring, tirade, I hope it has helped. I just got excited when I read Marisa’s description of sleep problems. And yes, it does help to know that I’m not the only one.

  • 2 years ago

    This is absolutely my life. I’ve missed out on so many things, especially when you mentioned funerals…I’ve been hospitalized twice when close family members have passed and haven’t been able to attend theirs. It’s like they never died and are just missing or something, as I never had that completion. So sad. Thanks for this; it’s nice to know someone relates.

  • debbieha
    2 years ago

    yes, unfortunately I do, have days off and do nothing and relieved I don’t have to. A huge effort to take a shower, change and go out when not working, I do understand.

  • Kelly Dabel moderator
    2 years ago

    Glad this resonated with you debbieha and hopefully reminded you that you are not alone in this. Thank you for sharing and being part of our community. Kelly, InflammatoryBowelDisease.net Team member

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