The Weekly Update: 3/19/17 + A Personal Note about Chronic Illness

 
 

My Weekly Update posts are always personal since I usually update you all about my life, but today’s is going to be even more personal than usual.

I’ve mentioned a few times on my blog that I have a chronic illness. I generally don’t like to specify it as CFS/ME partly because, thanks to the awful name (chronic fatigue syndrome), people tend to think, “Oh, so you’re tired? I’m tired too. Just push through it!” which isn’t how it works, and partly because there is no test to diagnose it—you have to get tested for and rule out a whole bunch of other things and then use a set of criteria—which always makes me wonder if maybe I just happen to have some obscure thing I wasn’t tested for or something I was tested for but that didn’t show up or that someone missed. I also generally don’t like to talk about it all, partly because I’ve always been a private person in general, and partly because, almost every time I tell anyone, the responses I get just make me feel even worse and less understood than if I hadn’t said anything at all, even if they’re well-intentioned.

But I’ve been thinking about something lately, and then, when I happened to search “chronic illness” on Tumblr the other day, I came across a bunch posts about the same thing I’d been thinking which, I guess, bolstered my resolve to also talk about it. It’s easy for those of us with disability to only show one side of ourselves and our lives—the good side. So that’s the only side that many able people see. And I feel like that’s just as harmful in how it contributes to the stigmas and misconceptions about disability out there. As is the idea that everyone with a disability is supposed to always be happy and inspirational and cover up our struggles and put on a brave face. I mean, the other week I typed out a tweet that said something like, “Been sitting in the grocery store parking lot for half an hour b/c I drove here but now don’t feel well enough to actually go inside and shop.” But then I deleted it because I felt like I would be judged for saying something negative, for not being all cheery, happy, “Life is amazing and I can do everything!” since that seems to be the only side of disability that’s ever portrayed or accepted. But I shouldn’t feel like that. No one should. I’m not saying people should focus on the negatives, just that they do exist, and sometimes disability sucks, and pretending otherwise doesn’t benefit anyone.

Don’t worry, my blog is still going to be about books, nothing is changing, but from here on out, you might see me mention these types of things more often in my weekly updates and my social media posts because it’s the reality of chronic illness and it won’t ever be understood or unstigmatized if it’s not talked about. I’m absolutely not saying everyone with disability has to talk about it, just that I think I want to.

To start off, I will say that I have been struggling more than usual lately. All the stress I’ve been under has worsened my usual 24/7 symptoms, like exhaustion and cognitive things (yep, in addition to physical symptoms, CFS/ME also causes things like brain fog, difficulty concentrating, and memory problems), and the symptoms that tend to come and go, like headaches and shakiness, have decided they like it here and want to hang around more often. But I’m still chuggin’ along and mostly getting done the things that need to be done, so it’s tough, but nothing to panic about. And I’m still blogging not because I feel obligated but because it makes me happy and I want to. But if I don’t comment as often or if any of my comments seem weird or loopy or forgetful, this is why. The cognitive symptoms are the ones that cause me the most difficulty when it comes to blogging.

Anyway, whew! I know that was long. But if you read the entire thing, thank you <3 If you learned something or simply thought about something you never had before or were able to relate in any way, that makes me happy 🙂 Even if you didn’t read the whole thing, thank you too just for visiting because you may be super busy or have your own problems to worry about or also have trouble concentrating or any number of reasons for not being able to read a long blog post.

In less serious news, I spent like ten minutes today giving belly rubs to one of the cats who lives nearby and hangs out outside:

Cat Belly Rubs

I feel like cats who like belly rubs are probably in the minority, but this one sure loves ’em! And that’s it for this week, so now for the bookish stuff!

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Blog/Bookish Updates:

I’ve got a giveaway starting tomorrow! But you’ll have to come back to see what book it’s for 😉 Sorry to my international friends though, it’s US only.

Also, I was not expecting my post about high school in real life vs. high school in books to be so interesting! But I have been loving all the comments and getting to learn about the different high school experiences people have had, especially in other countries where apparently some things are really different. I’m also a little horrified though that everyone in other countries thought all American schools must be like what they show in books/movies since that’s how it’s always portrayed, haha.

Books I Received for Review:

Look, Ma, no review copies! Aren’t you guys proud of me?

Books I Finished:

Broken Mirror by Cody Sisco
Sugar Scars by Travis Norwood
Gargoyle by Scarlett Dawn
Surrender the Dark by Tibby Armstrong | reading, books
 

Disability, uncommon paranormal creatures, and vampires—I kicked ass at my reading goals last week!

Broken Mirror was a good book, just maybe not quite for me—too much description of the history/politics/geography of the alternate world. Good character development though! Sugar Scars… fantastic premise and disability rep (Type 1 Diabetes), good story, but I had some fairly big issues. I didn’t expect Gargoyle to be great, I just wanted to FINALLY read about an uncommon supernatural creature this year and read something light and quick, but it managed to be even worse than I thought it would be -_- Plot holes, grammar/word errors, flat characters, and the book started with a 20% long sex scene before I even knew who the characters were. Thankfully Surrender the Dark was great! Well, the disability rep not so much since a magical ability partially cancelled out the blindness, but the rest was great!

Song of the Week:

“I’m Tired & I Hate This Song (Don’t Go) by Cyberbully Mom Club – Once again, no particular reason for choosing this song. I just found it recently and like it.

 

In Case You Missed It:

– I shared book covers featuring New York City.
– I reviewed Bleed Through by Adriana Arrington, an intense and gripping paranormal about a character with schizophrenia.
– I discussed high school in real life vs. high school in books.
– I reviewed Warlock in Training by TJ Nichols, a M/M urban fantasy with a unique take on magic and demons.

The Sunday Post Link-Up:

Once again, I’m linking up to The Sunday Post at Caffeinated Book Reviewer 🙂

 
 
 
 

Talk to me!

Have you found any good books or music recently?
Do you know any cats who like belly rubs?
Have you ever read about gargoyles?

 
 
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Your Thoughts

 

64 thoughts on “The Weekly Update: 3/19/17 + A Personal Note about Chronic Illness

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  1. Christy LoveOfBooks

    Wow, thanks for sharing that about yourself, Kristen. I’m really private too, so understand not wanting to get into details about personal stuff. And if you want to tweet something like that, do it! Don’t feel ashamed or anything – it’s honest and real. People will connect with that. Hugs.

    1. Kristen Burns

      Thank you <3 I just read something earlier today on a blog about how when we talk about our vulnerabilities, it makes other people realize, like, "Hey, that person's life isn't perfect, so my life doesn't have to be either," like what you're saying about how people connect to honest and real. So yes, I think you're right. *hug*

  2. Di @ Book Reviews by Di

    I kind of don’t want to say anything about your chronic illness because I don’t want to be one of those people that just make you feel worse about it. 🙁 But I love that you are talking about it and I love that you are seeing that it doens’t always have to be smiles and rainbows – WE ALL HAVE BAD DAYS and shouldn’t be expected to be 100% all the time – that’s not human! Your illness only makes things worse and the fact that you DO seem so upbeat a lot speaks volumes about how you handle it but don’t forget to take your own advice: negatives exist and pretending otherwise doesn’t benefit anyone!!!

    Ahhhh – giveaways are so often limited to the US! Oh dear. I can’t wait to see what you are giving though!

    Well done on not requesting any review copies!!!!!!!! I’m proud of you! Well done on your reading last week also – WOW!

    I’m sorry about the Gargoyle book being such a disappointment. Greg’s discussion post about different creatures was awesome and he mentioned gargoyles which I’d also love to see some more of (done well).

    1. Kristen Burns

      Thank you <3 <3 <3 You didn't make me feel worse at all! Exactly, everyone has bad days and struggles. It just seems like those of us with disabilities are expected to always be positive, but why should I be judged for talking about my illness related problems any more than anyone else would be judged for taking about other problems? I'm glad you understand what I was saying 🙂

      Yeah the shipping costs make giveaways a problem for other countries :-/

      Thanks! I am totally proud of myself for not requesting any review copies lol. And for reading books that fit my reading goals!

      Ugh yeah, I'm just glad the gargoyle book was short. And it still counts toward my uncommon creatures goal lol. I have numerous other books about gargoyles, so maybe one of those will be better!

  3. sjhigbee

    It is such a tricky balance. But I have a very good friend who battled major depression and what definitely worsened her condition was her instinct to hide the seriousness of her illness through feeling ashamed that it wasn’t a ‘proper’ illness. She finally started talking about it on social media and while there have been a smattering of comments along the lines of ‘Oh poor you – yes, I was feeling a bit down yesterday, too…’ most folks have been supportive and understanding. I very much hope you find you get the same response. You have my profound respect for all that you manage to achieve despite having to deal with such a difficult, draining illness day after day and my fervent hope that you discover the majority of your visitors, both here and on social media in general, try to understand. Take care and have a good week:)

    1. Kristen Burns

      That’s great that your friend was able to find some support and understanding by using social media. It’s especially hard talking about emotion. I think there will always be people out there who just don’t get it or who don’t want to, but a little support can go a long way when you’re struggling. Thank you for being so understanding, and you have a great week too 🙂

  4. cindy

    That Kitty is adorable. I think that it is admirable that you talk about your illness., sorry to hear that you are struggling more and hugs to you. I think that you do an amazing job with our blog and all of the graphics and coding, you are so talented!

  5. Stephanie

    I can’t imagine. It’s challenging to get everything done when you aren’t battling an illness…and people aren’t very understanding, sadly. I think it’s because they don’t fully *understand* what the battle is like. There are a lot of people battling chronic illness and they’ll understand. I do think you should write about it–what’s our blog for if not to write about our lives?

    1. Kristen Burns

      Thank you. It is challenging, and I don’t think it’s really possible for anyone who doesn’t have a chronic illness to truly understand what it’s like to have one, to understand how it affects every single moment of your life. But I think talking about it can at least help people be more conscious of it! And I agree, the beauty of having a blog is that I have a place to talk about these kinds of things 🙂

  6. Julie @ Happily Ever Chapter

    Good for you for sharing about your chronic illness! That is really brave of you. You never know who you may be helping by sharing your stories. I unfortunately suffer from a chronic illness too. I have chronic migraine, which just means I have more migraine days than good days…and I also have anxiety issues and panic attacks. Some times it’s really hard. I can’t imagine what it’s like to live with chronic fatigue syndrome.

    I have an ARC copy of Surrender the Dark too! I haven’t read it yet, but it sounds like it’s going to be a good one. I’m glad that you enjoyed it! Hope you have a great week!

    1. Kristen Burns

      Thank you <3 That's another reason I want to talk about it more---I've been helped and felt less alone by reading things other people have posted about chronic illness, so I know how important those types of posts can be. I'm sorry about your chronic migraines and anxiety. That has to be really tough. I know how miserable constant headaches can be, but I can't imagine how much worse migraines would be.

      Btw, I'm not sure your taste in books, but I just read When Planets Fall by Abby J. Reed recently, and one of the characters has migraines (and the author has chronic migraines). He's a POV character, but he's a side character and there's not that much mention of his migraines, but still, letting you know in case you wanted to read it!

      I think you're going to like Surrender the Dark! It really was a great book. Thanks, you have a great week too!

  7. Lola

    I’ve been wondering which chronic illness you had, but I felt it awkward to straight out ask in case you didn’t want to talk about. And I totally understand being a private person and not wanting to show the unhappy parts, but you also make a good point that it shouldn’t be that those with mental or chronic illnesses can’t share that side. So thanks for sharing!
    And maybe talking about it will make people understand it more. Anyway I am glad you decided to mention your illness and I think it’s okay to also show those parts of yourself if you want to.
    I am pretty sure I have a mental illness or two (never got it diagnosed though), but I don’t like to talk about it. So I usually just keep it to myself as it makes me feel uncomfortable to share it. I also think that sadly there are people out there who do judge others when they share things about illnesses and disabilities. Like that quote you shared, it’s so easy for others to say to just push through it, but they can never know the full extend of what you’re going through. So I think it’s admirable you talked about it so openly here. I am sorry to hear your symptoms have been getting worse lately :(. Tiredness and those cognitive symptoms sound difficult to deal with, especially combined with stress and other things you have going on. But that’s great you keep on blogging because it makes you happy and that makes sense commenting is a bit difficult sometimes because of your symptoms.

    I also feel that a lot of us try to be happy and uplifted on our blog and rarely share the more difficult parts, while it should be okay to share those as well if we want to. I think it just feels difficult to broach those unhappy subjects at times.

    That cat looks cute! And yes I also feel that cats who like belly rubs are in the minority. My sister has a cat that sometimes lies on her back and I am always tempted to pet her belly then, but I am pretty sure I would end up with her claws in my hand if I attempt that as she’s pretty skittish.

    I enjoyed your post about high school in real life versus in fiction. And that’s a good point, most of what I think American high schools are like is based on what I’ve seen on tv or read in books and I sort of toned that down a bit to try and create a more realistic view, I hope. But I am pretty sure it still doesn’t fit the reality.

    Nice on your no new books this week, I am the total opposite of you this week. I got a lot of new books and a bunch of them review copies. Sorry gargoyle was even worse than you thought. I am not a fan of books that start with a sex scene as it’s hard to care if you don’t know the characters. I think I once read a book about gargoyles, long ago, I can’t remember the title although i probably could find it out as I think i know who the author was. But I think that’s the only one. And I know Jennifer Armentrout has a gargoyle series, I once read part of the prequel novella, but forgot to finish it.

    I hope you have a great week!

    1. Kristen Burns

      Thank you for respecting my privacy 🙂 But exactly, I’m glad you understand both parts of what I was saying. Those of us with disabilities shouldn’t be made to feel like we can’t share that side of ourselves, and also, talking about it might help people understand more.

      But of course it’s also ok to not want to talk about illnesses, so I understand that. And thank you <3 the symptoms are definitely tough. And it's frustrating when I really want to read and comment on a post but can't even concentrate enough to read a paragraph let alone a whole post. But honestly blogging has helped me so much by giving me a community to be social in and productive activities like writing posts and reviews.

      I think a lot of us do try to stay positive on our blogs. I still plan to keep my blog positive, but to also not be so afraid to include some of the negatives sometimes too.

      That cat is a sweetheart! And lol yeah, probably best to not try and belly rub your sister's cat.

      Apparently lots of people think American high school is like that, and maybe some are, but definitely not all.

      I have so many books I want to read this year that aren't review copies, so I'm glad that I've been doing a good job of getting less of those. And yeah, I also don't like immediate sex scenes for that reason. There are quite a few books about gargoyles out there though, so I'm still gonna give some more a try!

      Thanks, you too 🙂

  8. Samantha

    I know about having an invisible disease. I have an autoimmune disease which causes all kinds of strange symptoms (brain fog, fatigue, numbness in my 3rd and 4th finger, etc). Its tough when people can’t physically see the effects because they tend to be skeptical of your illness. I also have an anxiety disorder and profound hearing loss. At least the hearing loss is somewhat ‘visible’ as all my coworkers and students can attest to (even with my hearing aids!).
    That cat is too cute!!!
    Hope you have a great week!

    1. Kristen Burns

      I knew from your blog about the hearing loss and anxiety, but I’m sorry to hear you also have an autoimmune disorder. They do cause all sorts of strange symptoms. I could write a list a page long of all my symptoms, and I’m sure you could too. On the one hand, I’m glad my illness is invisible since I can keep it to myself if I want, you know? But on the other hand, many people don’t seem to believe or understand that you have a real illness when they can’t see it, so that part is tough.

      The cat is a sweetheart! Thanks, you have a great week too 🙂

  9. Laura Thomas

    I’m with you about expectations of being positive and hiding the negative things. I often feel down or poorly and never mention it. Thanks so much for sharing about yourself. My cat loves belly rubs too!

    1. Kristen Burns

      There really does seem to be an expectation of positivity, right? Glad to know it’s not just me who has noticed that. But in a way it’s kind of strange since everyone has some sort of struggle, and maybe we’d all relate to each other more if we mentioned them. Haha, cats loving belly rubs is too cute!

  10. Michelle @Because Reading

    Life isn’t all rainbows and roses that is for sure. Good for you for saying how you feel and never hide anything about what is going on with you. You will be surprised how many people can relate. My son suffers from an array of mental issues and even with the change to his meds making him a less nasty kid that doesn’t mean he is cured but just less nasty 🙂 We still watch him to make sure he doesn’t hurt himself and he is very depressed sometimes. Right now his ADHD is out of control, I can barely keep up with him but it is what it is.

    My husband has MS so he is always in pain and tired. He rarely says anything but I know. I can tell when it’s a bad day.

    Thank you for sharing your story! I am sending you lots of HUGS! because you deserve them!
    Good thing that cat liked belly rubs, my cat would tear me apart if I even look at her belly 🙂

    I hope you have a great week, Kristen! ((((HUGS))) again!
    PS Talking about how you feel and what is going on is very looked at as negative, it’s honest and I like honest! 🙂 ox

    1. Kristen Burns

      Exactly, and we shouldn’t be made to feel like we have to pretend it is, you know? Thank you <3 We all have struggles, even if they're not illness related, so we all probably could relate more if we talked about them. I know from your blog that you've had some struggles with your son's mental illnesses, that must be tough for all of you, but I'm glad it's been getting better lately 🙂

      I'm sorry about your husband, that has to be tough for all of you too. If those of us with chronic illnesses complained every time we were tired or in pain, we'd never stop complaining lol, but that's good that you are still aware of it and are understanding.

      Thank you for the hugs! *hug*

      Lol a lot of cats would probably tear you apart, but this one always rolls onto his side or back so that you'll pet him there. He was purring and everything yesterday, it was so cute.

      Thank you <3 You have a great week too!

  11. chucklesthescot

    I know what you mean about people’s perceptions. I’ve suffered depression since 2003 and when you say that to some people the response is ‘we all get fed up, pull yourself together and get on with it’. That leads to headbutting fantasies. I think it’s difficult for us to talk about the medical stuff in case those following the blog don’t want to hear it or because we think we should grit our teeth and suffer in silence instead of depressing everyone else. I think it’s a good thing to talk about having a bad day, complaining when things are horrible, talking about frustration and pain and stuff. I’m certainly just as interested in hearing about your day as your books. You’re always welcome to say anything on your mind over at The Book Cave if you need somewhere to vent, ok?

    And that Gargoyle book sounds horrific!!!

    1. Kristen Burns

      Exactly, when an illness is invisible, whether it’s physical or mental, people don’t get it and think it’s something simple. But sad isn’t the same as depressed, tired isn’t the same as CFS, etc. And I agree, I do sometimes avoid the topic because I don’t want to make able people uncomfortable (that alone is just kind of ironic) and I know that talking about my illness is the fastest way to bring the mood down. Plus the whole expectation to be cheery and positive thing. But I figure the people who read my weekly updates do want to hear about my life, and if anyone doesn’t want to hear about my illness, well, they don’t have to read it and can just stick to my reviews and bookish posts instead. And thank you for welcoming me to vent if I need to, that means a lot to me <3

      Yeah... normally I don't tell people not to read a book, but it's really not one I would recommend! Kind of a shame since it had some potential.

  12. Maureen Beatrice

    Wow Kristen!! I’m very proud of you.. I imagine it’s really tough telling people about your illness and you did it in an beautiful way. You should never feel ashamed for the way you feel. And I’m sorry to read you had some bas experiences with sharing you story. So I’m sending you a virtual hug!! 😉
    Looks like you had a great reading week! I hope to get a lot of reading done too this week.

    1. Kristen Burns

      Thank you <3 I have had some bad experiences, but thankfully everyone who's commented on my blog today has given me positive ones! *hug*

      I did get lots of reading done! Too bad some of the books weren't very good lol. Still, at least I got them read since they were on my TBR!

  13. Greg

    Thanks for sharing that. I agree that I’d rather someone be honest about what they’re going through and not feel like they have to sugarcoat it. And you’re so right about stigmas- they’re SO hard to get past sometimes. It’s nice that you trust your blogger friends enough to share something so personal. 🙂 And I feel the same way about wanting to blog, amazing how helpful that can be!

    Argh so many typos in this post. Think I have ’em all fixed! I’m at the library since my internet is down at home and may be for days. Nice huh?

    And cats who like belly rubs are the best. 🙂

    1. Kristen Burns

      Thanks, I’m glad you agree and understand what I was saying. I’d also rather people be honest about what they’re going through so that I can understand. And yes, I do trust my blogger friends, and so far all the comments have proven that I’m right to trust this community 🙂 Blogging honestly has helped me so much, I’d feel so much worse without it!

      Oh man, that sucks :-/ I was actually wondering if everything was ok since you normally respond to comments quickly and are one of the first people to comment on my weekly update! Hope you get your internet back soon! I’d feel so lost without internet.

      Haha, they really are!

  14. Literary Feline (Wendy)

    My Gracie loves belly rubs. 🙂 She’s the first cat I’ve ever met that does.

    I am sorry for all you are going through, and I appreciate your openness and honesty. I think it’s important that people do talk about the hardships they face too. It really can make a difference in other people’s lives, whether they recognize themselves in what you say and realize they aren’t alone after all or maybe they learn something new–or recognize a relative or loved one in your words. As someone who struggles with Depression and Anxiety, I can relate to some degree. Sending big hugs to you, Kristen.

    I hope you have a wonderful week, Kristen! Thank you for opening up to us.

    1. Kristen Burns

      This is the only cat I’ve known who ever wanted belly rubs, it’s so cute though!

      Thank you. Everything you said is so true. I think talking about it can make a difference, whether it’s making someone who can relate feel less alone or helping someone who doesn’t have an illness understand. I’m sorry that you also have your own struggles, hugs to you too <3

      Thanks, you have a great week too 🙂

  15. suzanna

    Hugs.
    Living will a chronic illness is doubly difficult because it is invisible.
    Like you, I tend not to share the negatives that are going on in my life. Maybe if we were all a little more honest the online world wouldn’t feel everyone else has sunshine and roses when you have to put up with rainstorms and thorns. No wonder we’re all stressed.
    Keep on blogging… and reading 🙂

    1. Kristen Burns

      Thank you *hug*

      Exactly, we all have struggles, even if they’re not illness related, and if we all talked about them more, we’d probably be able to relate to each other more. And we wouldn’t all feel like we’re the only person who doesn’t have our lives together and perfect.

  16. Dina

    My dear Kristen,
    I totally can relate to the fear of being judged, But, what I am noticing, is if I don’t explain my struggle, people jump to conclusions. It’s basically damned if you do, and damned if you don’t. (Grim, I know). You do what makes you feel comfortable. I am always here if you want to vent about your disability. This is your blog, you should totally talk about your experiences some more. I don’t know a lot about CF, so reading your blog will now be extra helpful.

    THIS CAT IS MAGIC. None of my cats like belly rubs. WHICH SUCKS because they have jiggly bellies that I’d like to rub.

    1. Kristen Burns

      I agree, it is a damned if you do, damned if you don’t situation. If I don’t tell people, they assume I’m lazy, or that I don’t want to hang out with them and am blowing them off, that I’m rude, etc. They do make their own conclusions. But when I do tell people, they often start trying to tell me what to do and I end up having to explain and justify all my decisions about my body and my life. Or they think I’m exaggerating and it’s all in my head. But you’re right, this is my blog which means I can talk about what I want, and if other people don’t want to read about it, no one is forcing them. And it would be wonderful if I could help people learn a thing or two 🙂 Just a note though, it might’ve been a typo, but just so there’s no confusion, it’s CFS that I have, CF would be cystic fibrosis. So many acronyms lol.

      Haha yeah he’s the first cat I’ve ever known to like belly rubs, but he ALWAYS rolls over onto his back so that you’ll pet him on his belly!

  17. Lampshade Reader

    Thank you for sharing Kristen. I understand the need to be private, but sometimes it helps to just let it out. You will never be judged on my end, we all have our stuff to bear. Lots of virtual hugs sent your way.

    What a cute kitty! My Frida loves belly rubs…BUT, you have to earn them! LOL

    I hope you have a great week! ~Aleen

    1. Kristen Burns

      Thank you, it’s good to know there are some people out there who won’t judge me <3 *hug*

      He's a sweetheart! And haha, I'm laughing at the fact that you have to earn belly rubs from your cat.

      Thanks, same to you!

  18. Karen Blue

    I am sorry to hear you are suffering from CFS, but I am looking forward to more posts about this. I am a bit ignorant about it even though I am a nurse. So I am looking forward to learning about it more. I appreciate you sharing your experience.
    My cat (actually my daughter’s cat) likes belly rubs. He loves all kinds of attention. I have never read about gargoyles. That is something I never thought about.
    Have a great week!

    1. Kristen Burns

      Unfortunately CFS is an illness that’s not very understood, even by doctors. But I’m glad you’re interested in learning 🙂

      I wonder why more cats don’t like belly rubs. I love cats who love attention though! I like the idea of gargoyles, so I’ll have to give another book a try since my first didn’t go so well.

      Thanks, you have a great week too!

  19. Let's Get Beyond Tolerance

    I’m sorry about your chronic illness. It can’t be easy to live with – and that sucks it’s gotten worse lately. It’s definitely one of those things a lot of people don’t understand, but I’m glad you are going to talk about it more because you shouldn’t feel bad for something OTHER people don’t understand.

    And awww…kitty!

    1. Kristen Burns

      Thank you <3 It's not easy, and it's made harder by how difficult it is for people to understand. It's kind of ironic how many of us with disabilities avoid talking about them because we're worried about making the healthy people uncomfortable... even though we're the ones with the disability. But anyway, I do think talking about it could help spread more understanding 🙂

      Haha he's such a sweet cat!

  20. La La in the Library

    To bad the gargoyle book fell flat because I was saying on Greg’s post about Urban Fantasy creatures that more gargoyles would be great. I loved your high school post. I hate that people in other countries think awful things about our schools based on book and tv portrayals. Our cat is pretty grumpy, so belly rubs are like playing Russian Roulette, ha ha. It is such a tease because she has a soft fat belly. Have a wonderful week. 🙂

    1. Kristen Burns

      Yeah, that book was a shame, but I have some more gargoyle books, so I’ll give the creatures a few more chances! Haha about the cat. I probably just wouldn’t risk it. This cat always seems to want belly rubs though! Thanks, you too 🙂

  21. Dragonfly @ Our Familiarium

    I had been wondering since you mentioned your briefly chronic illness but I figured I had missed when you shared it and didn’t want to ask and make you talk about it again.

    First, thanks for sharing this part of you. I know it is not easy but I did want to know you better, especially about something that I suspected must have a great deal impact in your life.

    Second, I was diagnosed with fibromyalgia about ten years ago and it’s very similar to CFS including the brain fog, difficulty concentrating, and memory problems [which, though I joke about it, it is what really makes me Dory], so I think I I can relate to what is live with this condition and may know how you feel sometimes. Especially how people react when you share it. The test for fibromyalgia is the same, not very accurate so I never have something “tangible” to show people when they didn’t believe me. And yes, same like with depression [which I had too post-partum and then the one that is linked to fibromyalgia] the responses you get just make you feel MUCH worse.

    Third I’m glad you decided to talk about it. When I mentioned to you I wanted to read more about mental illnesses it’s because I feel I need to start talking about it and I feel book reviews is a somehow less daunting way for me to do it. I think maybe this week a bad review for a book about depression is coming up on my blog that is like a checklist of what not to tell a depressed person because it’s like you say about “hey cheer up! be happy!”

    Man! If depressed people could be happy they wouldn’t be depressed!!! WHY DO PEOPLE DO NOT GET THIS???

    So, from one person that has never dare yet to talk about her life with fibromyalgia, thank you! Thank you for putting it out there and maybe help more people understand.

    Sorry to hear you have been struggling more lately. 🙁 [Maybe in private we can talk more and share some tips to cope]. But I’m glad you re blogging. I always know blogging makes you happy. Anyone that reads your posts can tell you love this! 🙂 AND MOST IMPORTANTLY: your blogging makes ME happy [it’s all about me ;-P]

    Another thank you. Thank you for letting me know that your comments may feel odd! Now I understand that last, utterly hurtful comment you left on my blog ;-P

    You cat is darn CUUUTE! I hope you feel betters soon 🙂

    1. Kristen Burns

      I had no idea you had fibro. CFS and fibro are really similar, so I definitely think we can relate. I totally understand why you call yourself Dory now! The memory problems have gotten worse for me lately, I’m crossing my fingers it’s just temporary while I’m stressed out, but that might be wishful thinking :-/ I keep forgetting words and book titles and authors that I used to be able to recall easily. And yeah, the responses can make you feel worse than not telling someone at all sometimes. But my goodness, you’re always so busy and running around with your kids and cooking meals and also reading and blogging—I don’t know how you do it! That must be ridiculously exhausting.

      Ugh, yeah, that book sounds bad. Seriously, why do people think that those of us will mental and physical illnesses are like this on purpose, like we’re choosing this???

      I would love to talk more in private. No one I’m close to has a chronic illness, so it’d be nice to talk to someone who gets it, although I may not be the best person to give coping advice, haha. But yay, I’m glad my blogging makes you happy too 😛

      I get what you’re saying about it being easier to talk about illness in reviews and even discussions. That’s why I started with those and a brief mention in one Weekly Update and I guess worked my way up to this post lol. But I figure some people still might be more receptive to learning about this kind of thing through books and discussions rather than personal posts, so those are still helpful. But thank you for being supportive of my post, I’m also hoping maybe talking about it will help more people understand!

      Oh, and me telling you that vampires don’t sparkle doesn’t qualify as hurtful, that is a fully lucid and legit comment. Ok I’m pretty sure I haven’t commented that on your blog but, you know, can’t remember what my last comment was in order to make a joke about that lol, and I’ll take any opportunity to make you a vampire fan 😉

      Not my cat, but he is a cutie! Thanks 🙂

      1. Dragonfly @ Our Familiarium

        Yup that’s me Fibro Dory 🙂 I have SO MANY embarrassing moments of not remembering the names of people in the elevator of the building where I work, people I worked with for YEARS! LOL … OMG

        I’ll message you in GR on how to play a good Dory until this episode passes ;-P Like pretending you got a phone call when someone is approaching you down the hallway and YOU CANNOT REMEMBER THEIR FREAKING NAME 😀

        I’m sure you have plenty of tips too, because you have been coping too. You may not remember them until I share mine with you 🙂

        I guess I keep myself THAT busy because I may be ADHD too so I cannot help it. I can help overbook my calendar [and with it my poor family’s too] also Fibro can get very painful if I don’t move around a lot so I have to do it or take lots of painkillers.

        Comments in another friend’s blog is a safe way to talk about it as you may be noticing hahahahaha

        I just responded to your “hurtful” comment on my blog. Nothing to do with Vampires… TRAITOR! ;-P hope you feel better xoxoxo

        1. Kristen Burns

          Fibro Dory, haha, I love it. Can I be CFS Dory? We can be like a weird team or something lol. Thankfully I don’t have to worry about the name thing at least.

          Ahh, that makes sense that you do a lot if it saves you from pain. I don’t have pain that comes with fibro, just headaches, and those are definitely not made better by moving around a lot lol.

          Haha, well, if you feel safe talking about it here, I’m ok with that 🙂

          Well, I suppose everything can’t be about vampires. What a shame 😉 Thank you, and same to you in a general kind of way since chronic illnesses are just always tough! <3

  22. S. J. Pajonas

    I’m glad you talked about what’s going on with you! Though I get that maybe people always want to put their best face forward, it’s still important to let people know what’s going on with you so they can (hopefully) be somewhat accommodating. Now a lot more of what I know about you makes sense. 🙂 I hope the brain fog clears soon and you get some bursts of energy to get that packing done. That must be the hardest task right now! 🙁

    1. Kristen Burns

      I feel like it’s more that people are *expected* to put their best face forward and then judged if they don’t. And sometimes, especially in a case where you have an invisible illness, instead of being accommodating, some people just think you’re lying or being lazy and trying to take advantage :-/ But thank you for being supportive of my decision to talk about it <3 The brain fog never clears unfortunately, but I could really use some good days with a bit more energy!

  23. Jane @ Raincity Librarian

    It just breaks my heart to think of all the people who are suffering in silence, struggling with guilt or feelings of low self-worth, and worrying about how others perceive them, all because they have a real condition that is no fault of their own. Why does society seem to feel that some conditions are valid while others aren’t? It’s so frustrating, hurtful and really terrible, as societal misconceptions can prevent people from getting the help and support they need. 🙁

    1. Kristen Burns

      It is really unfortunate that so many of us feel like we need to stay quiet about our struggles all because some illnesses are seen as valid while others aren’t. I know exactly how frustrating and hurtful it can be. But people don’t understand what they can’t see. Maybe eventually it’ll change if these things about talked about more.

  24. kris @ lemon-notes

    BOTH MY CATS HATE BELLY RUBS THIS CAT IS A UNICORN AND MUST BE PROTECTED AT ALL COSTS. Seriously, cats who like belly rubs are kind of like finding the sword in the stone. You have been chosen by the cat, you ARE THE CHOSEN ONE. You’re a wizard, Harry.
    ANYWAYS
    I am so proud of you for taking down the barriers surrounding your chronic illness. You should share as much as you want to, and it definitely takes a lot of courage. I personally love learning about all the different things people can be stricken with. Essentially, you could write only about illness and I would still be here. Maybe this is why I chose to go into nursing school (half of the time I’m screaming into the void about the amount of work I have and WHY DID I DO THIS WHY. but then I eventually remember haha).
    I have not read anything involving gargoyles! They definitely have the ability to be super interesting as characters, but a super long sex scene without any sort of character introductions? meh. I’m not huge on the sex scenes in books for the most part anyways. I’m glad you killed your TBR last week! I’m struggling hard core (as always). Lovely post 🙂

    1. Kristen Burns

      Haha I’m sorry you have belly rub hating cats. This one isn’t even my cat, just one who lives nearby, so he apparently really loves them to entrust his belly to a semi-stranger lol. Or maybe I am just the chosen one 😉

      Thank you <3 It's good to know that other bloggers out there actually want to learn about these kinds of things, like what chronic illness is like. Glad I could remind you of why you went into nursing school lol.

      Gargoyles do have potential! I'm definitely going to try some more books about them. I won't hold this one book against them as a whole. I don't mind sex scenes, but I like them to have meaning and emotion between the characters, so I don't like them super early in the book. Thanks 🙂

  25. Becky @ A Fool's Ingenuity

    I knew yu had a chronic illness because I’ve seen you mention it in passing a few times and I’ve not wanted to pry (yes, it is very British of me, I also feel a strong urge to tell you to sit down have a cup of tea… there are some stereotypes which are true). I’ve not wanted to pry mostly because I figured I’d either forgotten something which you’d said before (which I do a lot) or because you didn’t want to go into so I’m glad you got it off your chest. No one is happy go lucky all of the time so I don’t see why anyone with any kind of disability or illness should have to be. That would be crazy! I mean you go to the store and don’t have the energy to go in and actually shop, I often can’t be bothered to get changed out of my pyjamas on a weekend and if get to the supermarket and my only excuse is I’m lazy. It’s good to be able to talk about things and at least then people know what’s happening with you and really being able to mention stuff on your blog that’s bothering you will probably make you feel better mentally. I feel like my Sunday posts are some kind of cathartic experience where I get things off of my chest and almost forget other people will be reading what I have to say. It helps… as does regular therapy sessions with a cat as they are so nice when they’re feeling fussy purring away.

    Ugh, and damn you and your non-international giveaways. I’ll just have to put up with seeing the giveaway and then thinking about buying the book. I’m totally not surprised about your school post being popular, though. It’s one of those topics everyone can talk about as we’ve all been to school so we’ve all got things to chat about.

    I hope you have a good week anyway. And I am totally playing that song on repeat, there’s something about it I just like it.

    1. Kristen Burns

      No, you didn’t miss anything, I’ve only ever mentioned it in passing before now. And thank you for not prying, although I hate all tea except kombucha, and even that I have to mix with Crystal Light to make palatable, so I’m not going to follow that advice lol. But I agree, it does make me feel better mentally to talk about it. Unfortunately I don’t have a cat of my own in order to have regular cat therapy sessions lol. It’s kind of hit or miss as to whether I will find a friendly cat any time I go outside.

      Sorry it’s not international 🙁 You should just move to the US. Problem solved. (Actually I can’t really say I’d recommend doing that at this point, so maybe just stay where you are.)

      Thanks 🙂 And the song is just great, right? The sound is like a combo of upbeat and haunting, but when you pay attention to the lyrics, you realize they’re actually sad, and altogether it’s really interesting.

      1. Becky @ A Fool's Ingenuity

        That’s alright, I hate all tea that is not proper British tea, preferably in the form of PG Tips as it comes in a nice little pyramid tea bag and I can mix with milk and sugar that way so my strong urge to make tea is not always helpful. That is a minor issue in cat therapy, I’d say get a cat but they add a whole multitude of problems to things when you are actually responsible for owning a pet. Also, eve when you own a friendly cat they aren’t always interested in speaking to you unless they want feeding. I know, my cat only likes me when I come home from work and he requires food.

        I would move except I’d have to find a job and a place to live and everything is so much spaced out in the US and I’d have to learn how to drive. I’ll stick with the UK and the multitude of issues we have here instead. Also, last time I went on holiday there I got really confused by the fact you don’t include tax in your prices. Why make things so hard for yourself and have to do maths while you shop?

        And that’s exactly it, it sounds like it should be a really nice slow relaxing song but then you start listening to the lyrics and there is a whole other side to it which is quite sad.

        1. Kristen Burns

          Lol yes I think actually having to take care of a cat would bring more problems than would be solved with the cat therapy.

          I did not realize everything was so spaced out in the US? You mean that we have to drive places instead of walking? Haha I didn’t even know other places included tax. I’m just used to knowing it’s going to cost more when I checkout.

          I think most people don’t pay much attention to the songs I post (which is fine, they’re not particularly important), so I love that you understand why I like this song lol.

  26. Wattle

    Aw that looks like one pleased kitty! One of my cats loves belly rubs, he also loves to claw and bite you when he’s done; because he’s an asshole.

    Chronic illnesses suck, and there’s so many ‘invisible’ ones. People judge, because they don’t understand; but to understand we have to educate them (and then be judged, I guess; ugh). I don’t talk about mine a lot online either, I mention them here and there when they’re particularly bad but always feel like it’s TMI (not that I go into details). I didn’t realise CFS had those effects as well, memory and all that; though it makes total sense now you’ve said it.

    I hope you had a good day today 🙂

    1. Kristen Burns

      Right? I love the picture I managed to get with his closed eyes and everything. Haha well that’s… one way to end a belly rub 😛

      There are SO MANY invisible ones and lots of people have them, which makes it even more unfortunate that they’re so misunderstood by people and that so many people don’t even believe they exist half the time. I think a lot of chronic illnesses have similar symptoms, at least the fatigue and brain fog seem to be common.

      Thanks, same to you 🙂

  27. Nicole @ Feed Your Fiction Addiction

    I think it’s really brave of you to post about this knowing that sometimes even well-meaning comments will be upsetting for you. I think that sharing our struggles is important because it makes us feel so much less alone when we see that someone else is going through something similar to us. While I don’t have a disability, I am raising a child with cognitive disabilities and sometimes I feel like the sunshine and rainbows approach is what’s always expected—people want inspiring stories about how your special needs child has filled your life with joy, not tweets about how the fact that your 12-year-old came down with his collared shirt on backward (again) made you cringe and worry about his future (and you were probably more short with your response than you needed to be). But people need to know the good AND the bad—that’s reality.

    1. Kristen Burns

      Thank you <3 Thankfully everyone who's commented so far has managed to not say any of the "what not to say to someone with a chronic illness" things lol. Small victories! But yes, it does feel like the sunshine and rainbows approach is what's expected, but it's usually what's expected by people who've never dealt with disabilities. But people with disabilities don't exist to be inspirational. And only talking about the good gives a skewed view of things because, like you said, the reality is that there's good and bad.