The Paper Kind

Creative living.

A Day In My Life With Chronic Illness

I decided to do something a little different today. As I’m sure many of you know, I have a chronic illness. I have Chronic Fatigue Syndrome which makes daily life extremely difficult.

So today I thought I would share a typical day in my life. I took a photo of everything I did during the day and this is the result. Chronic Fatigue makes it extremely difficult for me to cope with every day life. To some it may seem like I have a very mundane existence. Unfortunately this is the reality of living with a chronic illness.

A DAY IN MY LIFE WITH CHRONIC ILLNESS

MORNING

A typical day in my life with chronic illness. Waking up just after 9am. Image shows face of digital clock which reads 9:16.

I wake up some time around 9. I’ve found ever since being diagnosed with a chronic illness I need far more sleep than what I did previously. In the past I was able to stay up till 2-3am with no consequences. Now I find it extremely difficult to cope if I don’t get at least 12-14 hours of sleep. Ironically my Chronic Fatigue makes it very difficult to sleep.

This particular morning I wake up to find it has snowed overnight. I also have no pressing matters to be dealt with. This means I can have a lie in, hoping that I won’t be so tired during the day.

Desk with computer and breakfast on worktop.

Eventually I get up. In the past I wouldn’t have bothered with breakfast. It’s always been something which made me feel slightly ill. But I’ve found with this chronic illness I really need to eat something first thing in the morning. So a banana it is.

I check the post to find out I’ve been sent two books to review. Written in the Blood by Stephen Lloyd Jones and Smiler’s Fair by Rebecca Levene. I was really surprised to get a copy of Smiler’s Fair, I requested it over a month ago.

I decide to take the dogs outside for a quick walk. Though going out is something I still find difficult it always makes me feel happier. The snow really helps too, you might be surprised to learn its not all that often we get snow in Scotland.

Dog jumping about in snow.

Alfie is still quite young and hasn’t really seen a proper snow fall so he really enjoyed getting to play in the snow. My older dog still enjoys playing in the snow too. Though because of his arthritis he can’t move about like he used to.

SOME BLOG WORK

Desk with notebook and laptop on the surface.

I finally sit down to work on some blog posts. Because of my chronic illness I try to have posts written in advance. This makes it much easier if I have an unexpected bad day. I’ve got a little more blog work than normal to do because of my Chronic Fatigue not playing nice with the cold weather.

I start working on a new draft post. I’m not entirely sure what the post will be about yet, I have a few photos and a vague idea of a subject. I like to do a first draft in my notebook before starting a new post in WordPress.

This notebook is my everything. I take notes in it, paint, plan out my time. This one tool is the best piece of stationery I’ve bought in a long while.

The post comes together quickly enough with words and photos. Its just a short blog post this time. I manage to get everything typed up and scheduled before lunch.

AFTERNOON

Daily living with a chronic illness.

Lunch is quick and simple to make. Before having a chronic illness I never considered the possibility that being ill would make things like cooking difficult. Even thought I’m better than what I was cooking is something I still find tricky.

I take this time at lunch to rest and catch up on a few youtube videos. With Chronic Fatigue its really important to not over extend yourself. I keep having to remind myself its okay to take breaks every so often.

After lunch I decide to make some shortbread. I love shortbread and this recipe in particular because its more cake-y than some recipes I’ve found. If you go into the shops looking for shortbread you’ll probably only find thin sticks. But shortbread can be chunky too.

The other advantage of this particular shortbread recipe is how quick it is to make. Shortbread is literally just a mixture of sugar, butter and flour. I get the whole thing mixed together and into the oven in under five minutes. It takes me far longer to tidy up than it did to make.

While the shortbread is in the oven I take photos for a blog post. My photo studio set up might look slightly ridiculous but it works surprisingly well. The white foam board is cheap which makes it a great background. It also works well to reflect light so the dark side of the book isn’t quite so dark.

BLOGGING WITH A CHRONIC ILLNESS

Desktop with computer, book and cup of tea on surface.

I start working on a new book review. This is the last thing I need to do today which is good because I’m just starting to get tired. I’ve learned that with chronic illness you really need to stop before getting overtired. If you don’t things will just be worse in the long run.

Amitriptyline tablets to a help chronic illness.

I take amitriptyline every night to help me sleep. The unfortunate irony of Chronic Fatigue is it makes me tired but also unable to sleep. There are very little medications I’ve tried which help my CFS. Amitriptyline is one where the results are just slightly better than the side effects it causes.

Sharing a full day living with a chronic illness.

Before going to sleep I do a quick last check of my emails. There is never usually anything which is so important it needs to be replied to straight away. I’ll also take this time to go through any comments I’ve had on my blog.

After this I’ll read something. Today I’m starting a new book. The Ocean At The End Of The Lane by Neil Gaiman. I always try to be done with my evening routing by 10. It really helps my CFS if I get enough sleep at night. Of course my CFS being a tricky thing there are always bad nights where I don’t get much sleep at all.

FINALLY

I hope that was an in depth enough look at what daily life is like for someone with a chronic illness. Of course the amount I’m able to get done in a single day can change. Some days I do more which leads to days after where I have less energy. But overall this was a good day.

I finished some blog work that I wanted to do and I didn’t feel too horrible while doing so.

98 responses to “A Day In My Life With Chronic Illness”

  1. I really enjoyed joining you for a day, Emma!

    I was thinking of you and other fans of Gaiman when a character in a book I’m currently reading was reading one.

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  2. I love this! We all think we have boring lives, but other people’s lives are not boring….maybe I’m just nosy 🙂
    Thanks for sharing your day! (and I’m looking forward to reading The Ocean etc myself)

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  4. I concur…I loved hearing about your day. We are in different stages of life and yet have similar interests. I am American, 51, have grown kids, currently living in Tennessee (though still consider myself a Seattleite after living there 30 years…go Seahawks!), not working after a layoff after 17 years at former company…so at home now discovering new life. I loved hearing about your very productive day despite challenges. You are inspiring.

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  5. I am kinda really jealous how productive your life is. Mine is kond of same everyday and it’s pretty bored actually. And to make it worst I have trouble sleeping at night and this has cause me to wake up nearly in the afternoon. I usually rely on books and milk but that doesn’t help either.

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  8. Great idea showing a whole day in a post.
    And for suffering from CFS you’re VERY productive.
    And excuse my language, but: “F*%k you, chronic diseases! Go home! Nobody wants you!”

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  13. Thank you, Emma, for letting us join you in your day. It’s always interesting to see how other people do things, normal things at home. At least you got to go out with your puppies, to play in the snow for a bit. Great pictures! Mine would be computer, dishes, computer, laundry, computer, feed cats… somewhere in there I get to write stuff! 🙂 Love all your posts!

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  16. I always love to read/hear how other writers get through each day. And may I just say, I LOVE your pen organizer on your desk, full of pens. I want one of those!

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  17. Think that you have a boring Life? Well, that sort of makes two of us. Being Retired now, I don’t have to be anywhere and do something that someone else wants me to do. Retirement is not all of what they say it is. During the Spring, Summer, and Fall I can always find someplace to go or something to do. The Winter months are plain Blah! To darn cold to go out there with my Nikon. Find something to do inside the house. Read my blog to see if I got any likes, or comments, but never seem to get many comments at all. Try to think of something to Post about, but Life is rather boring right now.

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  19. I love this. Its great to see how other people live. Although im sure i wouldnt have anything to take pictures of. Your amazingly productive considering the CFS. Im craving shortbread now!

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    • I mean I still get tired during the day, but I’ve found that working through the tiredness is better than going for a nap. That usually just makes me feel worse. I used to go for a walk every time I felt tired but I ended up making myself more unwell.

      But you should do your own version of this. I would love to see it.

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      • I agree about the naps, as they make me feel worse too, but its a very difficult balancing act between doing too much and not enough. Glad you’ve found the middle ground.

        I might give my version of this post a go, will link it back if i do.

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  21. How lovely and inspiring of you to share your day with us Emma 🙂 I take amitriptyline also for fibromyalgia, neuropathy, and migraines. I’m fortunate though in that it helps me sleep. I’m a minor of a Neil Gaiman fanatic. My two favorites are American Gods and The Ocean At the End of the Lane. I’m going to try that shortbread recipe!

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    • Yeah amitriptyline is a strange drug. I’m not taking it for pain relief but since I started it I haven’t needed to take as many pain killers. I also read somewhere that its given to kids that have problems wetting the bed.

      That reminds me I need to change that recipe a bit. I used a different pan this time so the shortbread wasn’t quite as chunky as I like it.

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  23. I really liked this! Might nick this idea tbh haha (will obviously credit you as inspiration!)
    Also, The Ocean at the End of the Lane is seriously good, I read it on holiday this summer and loved it

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  27. Love this! And I don’t think it’s boring – you’re FAR more productive than I have been lately. I’ve got a similar post in the works but I’m waiting until our semester gets back in full swing, because right now the post would just be picture after picture after picture of my computer screen.

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  28. Hey, this isn’t boring at all! It’s great getting a sneak peek into other peoples lives :). And I bloomin’ love shortbread so as others have said above I’m definitely going to try it out!

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  29. Thanks for letting me into your life today. Where do I go to get the books that you receive via mails?
    And oh, Yh you gotta show me how to schedule my posts too.
    Will remember you in prayer too.

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    • The books I got were from bookbridgr, however its only for book bloggers in the UK just now.

      Scheduling posts are super easy. So go onto the page were you write a new blog post. On the right side of the page there should be a Publish box. The 4th option down should say ‘Publish immediately’ if you click the Edit next to that you can pick a date and time that you want the post to be published. Pick a date and time then click OK. And your post should be scheduled.

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  30. Wow you got 73 comments! too many to scroll through, I wasn’t sure if I answered you about making the video. I was pouring my many meds into my med caddy and thought it would make an interesting video, to talk about the things I do for love … er, bipolar … lol

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    • Oh wow 73 comments. I didn’t realise it had that many. And I think there are still some I need to go reply to.

      Do it make a video! I was actually thinking about starting to make youtube videos again.

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  31. I absolutely loved this! This would be something I would love to do! Also, where did you get those white boards from to take pictures of books on? It may be cheap but it looks fab 🙂

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  34. I liked this post and your photos a lot. Have you tried medicinal marijuana for CFS? Oils high in CBD don’t make you high or “stoned” and can really really help relax you and drift you off to sleep completely naturally. I’m here if you want to talk more about it!

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  40. […] it was fun to write down all the reasons why I hated it. My best non-review post has to be my Day In A Life post. I love learning about the really mundane stuff in a person’s day. It’s really […]

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Hello!

I’m Emma. I am a designer, calligrapher, and content creator, sharing my love for paper goods. Expect pens, pencils, and some really fancy paper!

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