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Passing Time With A Chronic Illness

Passing Time With A Chronic Illness

September 5, 2017 ribbonrx Comments 8 comments

When you have a chronic illness (or two, or three) sometimes you find yourself with some down time. Not necessarily because you chose this, but because your body decided for you. This is when it helps to have a hobby (or two, or three) to occupy yourself with.

Ah, the flare. Every chronic illness has these days. You may find yourself holed up in the bathroom, flat on your back in bed, or huddled under a blanket on the couch. Flares can last for hours, to days, to weeks. And despite the pain, the fatigue, or whatever else happens to you during a flare, you may find yourself seeking ways to occupy yourself that don’t make you feel worse.

What can you do to pass the time? The options are many. However, it may be that a hobby that seems rather obvious may not actually work out too swimmingly for someone with a chronic illness. Let’s weigh the pros and cons of some common hobbies.

Read

Reading is a great hobby.
Then there’s that silly brain fog…

Pros: Who doesn’t like to read? It’s been my own favorite hobby since my parents started reading to me as a baby! This is your chance to pick up that book that everyone has been raving about and join the party. Who are the seven husbands of Evelyn Hugo anyway?

In addition, I have found reading to be a fairly decent distraction technique when I’m experiencing mild to moderate pain. (Not so much when the pain becomes severe, unfortunately.) Sometimes I will take some pain meds, read for an hour or two while the meds kick in, and then get up and do something useful once my pain is down to a manageable level. An extra bonus is that I can lay down and hydrate during my reading time as well, which is a good thing for my POTS. Then I’ll feel that much better when I’m done reading!

Cons: If you’re experiencing headaches or dizziness, attempting to focus on the words on the page may prove to be too much of a challenge. I know if I read for too long, I end up giving myself a headache. And sometimes, just the simple back and forth movement of my eyes across the page can make my dizziness worse. Also, if you’re using an e-reader, the light from the screen may cause a headache or make an existing one worse. I’ve never actually used an e-reader (I’m a stickler for tradition, haha), but I’ve heard dimming the screen is helpful for some people.

Write

Writing is a great hobby.
Sometimes there may be other obstacles to writing…

Pros: Writing is an excellent way to release some inner tension and express what you’re feeling. It doesn’t even have to be a true hobby where you write regularly. You can use a journal, fun stationary and stickers, or colorful pens. Why not all of the above?

You can also look back on your writing in the future as a way of benchmarking progress (or lack thereof) with your illness. I was actually able to pinpoint with my endometriosis surgeon exactly when a particular symptom started because I had written about it in my journal eleven months prior, not thinking much of it at the time. This actually ended up being important in determining what the problem might be.

Cons: Writing can be tricky, of course, depending on how you’re feeling. It may be a challenge to hold a writing implement if you suffer from MS, rheumatoid arthritis, or fibromyalgia. You may find it difficult to sit up long enough to write anything if you have POTS or ME/CFS. Or brain fog could be contributing to a sizeable writer’s block. You could consider typing instead, or use voice recognition software (which could also provide interesting entertainment.)

Adult Coloring Books

Pros: You’re never too old to color in a coloring book. Full stop.

Cons: Artists who design for adult coloring books, while extremely talented, seem to think it a fun game to draw the most intricate designs known to modern artistry. If you’re like me, you may still, after all these years, have difficulty coloring within the lines. Or you simply don’t care for the little intricacies within the design. In which case, coloring is an extremely stressful activity provoking choice words and grumbling. Your husband may enter the room to find a coloring book sailing past his head…only to find out it was actually his wife who threw it. Or maybe that’s just at my house…

Listen to Music

Pros: Music is an excellent distraction technique. The great thing about having music as a hobby is the huge range of genres; it gives everyone something to listen to. There’s something so therapeutic about pulling up your favorite artist on your phone or iPod or Spotify and letting the sounds and/or lyrics take you away for a little while. I’ve actually made a few different playlists over the past few years to pull up at various times.

  • “Pain Control,” which has apparently 11 hours and 32 minutes worth of music that really helped me three years ago when my endometriosis was out of control. It would help me compose myself on the way to work and fight through the pain on the way home. I haven’t added to it in awhile, though.
  • “Be Happy,” which I made last year when my depression was at its worst. It’s 7 hours and 7 minutes of chipper, happy, bouncy, jump-up-and-down songs that I would put on when I was in a serious funk to at least get my mind off of bad things.
  • “Rend Collective,” which is 5 hours and 51 56 minutes (woohoo, new single!) of nothing but Rend Collective. Heaven, if you ask me.
  • “Christian Folk,” a stupidly named playlist consisting of 10 hours and 26 minutes of Rend Collective, All Sons and Daughters, and Lauren Daigle.
  • “2017,” a short(er) playlist, only 4 hours and 22 minutes of music that I’m feeling this year. But don’t let the year fool you; I have a song dating back to 1970 on this list.

Cons: It pains me to recognize that there are downsides to listening to music, but indeed there are. If you have a severe headache or a migraine, then it’s best that you keep your surroundings quiet. In addition, for those of us who suffer from brain fog, music can be too distracting to be able to focus on anything else. I used to have music on all day, but now I don’t too often because it makes me unable to think.

Social Media

Pros: Although I wouldn’t necessarily consider this a hobby, social media can be a fantastic tool for those with chronic illness. You can be part of any number of support groups on Facebook to experience some camaraderie with others who are similarly affected. It’s important to be able to share experiences, both good and bad, while encouraging each other to keep going. I’m in several endometriosis groups, pituitary tumor groups, dysautonomia/POTS groups, and celiac disease groups. It’s always encouraging to know that there is someone in one of those groups who can relate to what I’m going through. Some of us even share the same myriad conditions!

Cons: Since people can be people, there are times when human pettiness gets in the way and support groups can become unfriendly places. Differing opinions is one thing, but not respecting the opinions of others is something else altogether. I have left endometriosis groups because I couldn’t stand people being so mean to each other. (Maybe it was the hormones?)

In addition, I’ve discovered that even outside of support groups, raising awareness about the realities of chronic illness is occasionally unwelcome amongst many “friends.” You can complain that the barista put one shot of espresso instead of two into your morning pick-me-up. But God forbid if you share with the world that your migraine is going into its fourth day or that your pelvic pain is so bad you can’t get up off the bathroom floor. It’s all about the important things, people.

Hang Out With Furry Friends

Pros: If this could be considered a hobby, it’s one of the best! It’s no secret that the more common household pets, cats and dogs, can sense when their humans aren’t feeling quite right. Sometimes they even know it before you do. The skills of service animals in alerting to oncoming seizures, low blood sugar, impending loss of consciousness, and panic attacks are crucial for individuals with certain medical conditions. But even if you don’t have a service animal, your household pet can often prove to be a tremendous comfort when you’re not feeling quite human yourself.

A new hobby- hanging out with cats!
At least they shared the bed this time. Can you find all seven?

Cons: If you happen to be allergic to furry friends, I’m very sorry. ?

I have found that sometimes my felines can be a little too enthusiastic when they sense that mommy needs some healing snuggles. With seven cats, this can quickly become overwhelming. I have woken up from naps to find one cat laying on top of me, one sharing my pillow, three others cuddling up next to me to keep me from moving, and the other two down by my feet. Cute? Yes. Hot? Very.

What are some other activities that help you when you need to pass the time during a flare? Do you have a hobby that you can do when you’re not feeling well?

?ribbonrx

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Books, Cats, Chronic illness, chronic pain, Hobby, invisible illness, Music, postural orthostatic tachycardia syndrome, POTS, Reading, writing

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8 thoughts on “Passing Time With A Chronic Illness”

  1. aportionofhopeandadramofoptimism says:
    September 5, 2017 at 5:58 am

    You’ve just inspired me to make some playlists ready for the next time I’m stuck in bed and need some music! Thank you 🙂 I would also recommend listening to podcasts or audio books (the advantages of reading but without having to hold the book or read along the lines) and I’ve just discovered crochet, which is a great distraction, although equally like colouring books can be found sailing across the room at certain intervals!

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    1. ribbonrx says:
      September 5, 2017 at 6:49 am

      Playlists are so great! I have far too many for the randomest things, haha. I’m always worried with audiobooks that I’ll let my mind wander and not pay attention! And glad to know I’m not alone with those coloring books! ?

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  2. SickChristine says:
    September 5, 2017 at 8:38 am

    I’m cracking up about being able to complain about a screwed up Starbucks order but not your pain. That is so true. And being frustrated by the coloring book is a real thing. I don’t know how a perfectionist could get pleasure from it. I also have a lot of joint pain still from my time on oral chemo, so coloring is just too painful. I have discovered water color pencils and a sketch book are fun, though.

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    1. ribbonrx says:
      September 6, 2017 at 12:21 am

      Water color pencils sound like fun! I’m terrible at anything involving drawing, though, hence the coloring book debacle. ?

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  3. alishamichelle7gmailcom says:
    September 5, 2017 at 7:37 pm

    Listening to Audiobooks has been great on days where I’m too dizzy or my eyes are too dilated (or not enough) to read!

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  4. Joey says:
    September 12, 2017 at 1:59 pm

    This was a great article. I like to paint on canvas etc when I feel up to it. I’m on Instagram if you want to see my work. ” Unique Liquid Art” send me message if your from this ribbonrx.com.

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  5. gemmaorton says:
    September 27, 2017 at 4:46 pm

    Reading is a great distraction and regular hobby of mine.
    I also love to do crafts. Nothing too energetic, I’ve had a cross stitch on the go for years!

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  6. 36berkeley says:
    August 14, 2020 at 12:59 pm

    I find it hard to do anything for most of the day (I usually feel better in the evening). I can’t concentrate to read a book or knit or cook, and lying around “waiting to feel better” is hard. Sometimes I listen to podcasts or birdwatch out my kitchen window.

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