On Being Tired

I first learned about ME when I was 10. I didn’t know much about the illness but I knew enough that I though it would be a fun thing to have. I mean any illness that gets you time off school must be good right?

As it turns out ME or CFS or SEID or whatever you want to call it is not fun. It is rather boring. In fact it is mind numbingly boring. Yes, you would think being tired all the time is great fun. I mean it gets you away from all those boring adult responsibilities like work and school. But instead you’re stuck at home every day.

Soon the highlight of your day is whatever is on the television or what you’re going to eat next. You get up have some breakfast then spend the next 4 hours thinking about what you’re going to have for lunch. Then you spend the rest of the day thinking about what you’re going to have for dinner and before you know it the day is over, time for bed and the cycle to start again tomorrow.

The way to stay sane while having CFS/ME is by finding hobbies that keep the boredom at bay. I have a couple (you may be able to guess them) painting, reading and blogging. The thing is these hobbies require you to be at a certain level of awakeness where you can actually focus on the thing you’re doing.

I don’t blog because I want to be some famous blogger. I don’t post 3 or 4 times a week because I read somewhere that it was a good way to get views. Blogging literally keeps me sane. I have no doubt that I would have gone mad with boredom a long time ago if I didn’t have this blog.

But there are some times when I can’t write. And they drive me insane. Because those times I am at a level of tiredness where I can get out of bed but I can’t focus on anything. I hate those times. I have so many things I want to write about but can’t because I’m too tired. I’ve even tried to think of ways to get around it, maybe even get a friend to ghost write a post for me. But then you loose all the fun of blogging. I enjoy it because I do all the work.

Sometimes I wonder what my 10 year old self would have thought about this whole CFS thing. I think she would have loved it. I mean time off school and nothing to do all day but read, yeah she would have loved it. But she didn’t understand the realities of living with CFS and I think there are many people out there like her. And that’s okay.

TL;DR I was tired so instead of writing a blog post I wrote a blog post about how I couldn’t write a blog post because I was tired.

on being tired

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57 thoughts on “On Being Tired

  1. Hi BLUCHICKENNINJA, I was just passing through the reader list and came across this post. My 10 year old self had to put up with the fact that everyone thought that I was just plain lazy. As an adult, I realise that CFS, like Brussel sprouts, is pure evil. It’s something that no one understands unless they have experienced it for themselves. Like you, I hate it the most when it interferes with my writing, as it’s the only thing I consider myself to be any good at. Anyway, sorry to ramble, It was just nice to come across someone going through something similar. 🙂

    1. I think I love you, now I know I’m not the only person that thinks brussel sprouts are the work of the devil.

      But yeah its nice to meet people who understand what you’re going through. No need to apologise 🙂

      1. LOL! I thought that I was the only person that used the actual sentence, ‘sprouts are the work of the devil.’ Sprouts and the Kardashians.

        1. Yes!!! For about a year I got so confused every time I heard someone talk about the Kardashians. I couldn’t understand why people were so fascinated with a bunch of aliens from Star Trek.

          1. LMFAO! Thanks for that. Not only did you just make me blow diet Pepsi out of both nostrils like a whale blowing air out of it’s blowhole, but I think I may have peed a little at that comment.

  2. I think ANY child would be excited to no have to go to school. It’s hard to get a child to understand the ways of adult life (the bills, the career, the family time, etc) because at that age, the biggest things they have going on are school or chores.

    I do not struggle with this and I don’t like to compare anything that isn’t even close; but I imagine it almost feels like you’ve reached the point of burnt out all the time. I reach burn out on the weeks it seems like it’s never ending going here or there or doing this thing or that – that’s the only thing I can relate to it and that feeling is NOT pleasant.

    I think you are doing a wonderful job of writing even if you tired. It’s showing your dedication to it. Such an inspiration to those around us who may be experiencing something similar!

    1. Oh yeah I don’t think kids quite understand adult life. But I think even some adults don’t understand quite what CFS is like. Its not just regular tiredness. Its sort of like having a cold constantly. Or a hangover. It something you need to experience to understand fully. Though I wouldn’t recommend it!

  3. For whatever reason you blog, you’re very entertaining at it and always a good read. I’m so very sorry for the reason you took it up, but I’m glad you came to it. I always look forward to your posts.
    All the best.

    1. I actually had this blog before I got sick. I started it on the 31st of December 2012. At that time it was called My Boring Year. As it turns out what with going back to college then ending up unwell and dropping out I had a very very not boring year.

      Anyway thank you for reading 🙂

  4. I had a can’t do anything day today. I have loads of things I want and have planned to do. But when I got up at lunch time I knew this would be a very boring day of waiting till dinner. My ten year old self would have loved it too but the novelty soon wears off.

  5. I just wanted to tell you that I love your honesty, sense of humour & most of all your attitude about your illness which comes across in your blog posts. I love that you mostly focus on what you can do rather than what you can’t do but you balance that with the reality of living with such a potentially debilitating illness in your writing. Thank you for inspiring me to focus on what can be done and not what can’t (for whatever reason).
    Mrs B x

  6. Got halfway through your post, laughed, and then immediately felt guilty for laughing, because what went through my mind was, “Wait, is she writing about being too tired to write”?

    And then I got to the end of your post.

    I understand where you’re coming from, though, honestly. It really is frustrating to be at that level of tired where you can and do get out of bed, but you still can’t focus on a thing.

    1. Honestly you can laugh all you want. I know how ridiculous it is! I was too tired to write this morning and I wrote a blog post anyway. I should have just written the post I had planned on going up today!

  7. I imagine that it’s quite difficult to live with CFS. I imagine that it’s even harder to explain it to others. On the outside, they question why you’re not doing anything. They can’t see what’s on the inside. Hopefully, your blog will help them to see what’s going on, and maybe change their point of view.

    1. The explaining it to others bit is surprisingly easy. Imagine you have a bad hangover or a bad cold. That is pretty much how I feel all the time. I’ve found that doctors understand pretty well. Its family and friends that don’t really get how it feels.

  8. I can really relate to you and this post especially because of my own issues with CP(Cerebral Palsy). I just want to say keep at it, I really enjoy your blog 🙂

  9. I think I mentioned before that I have CF’s painful cousin, fibromyalgia, and that comes with fatigue sometimes as well. I hope someday there will be a cure for these horrible conditions. In the meantime, be good to yourself. And try not to worry what others may think. I’ve sometimes wished certain people could experience it for one day – that would shut them up. 🙂

  10. I liked this.. I know you don’t know me, my opinion shouldn’t matter so much but I really like what you write. You write because you want to, because you Have to to stay sane not because you want people to like you, or have followers or have views. It is refreshing. I started blogging a few years ago because my therapist suggested I get a hobby.. What am I supposed to do when I am sick?? I thought she was out of her mind. I then realized this community of people, I found some people like me who had the same thing I had and then others that were different and it went on from there. I have never linked my page to Facebook or another social media, my family knows nothing about this. I look at it as my way of expressing my self through word. No judgment, because no one knows me. People can either read what I write or not. Its for me. I really enjoy coming across real people such as your self, not trying to shove posts down my throat 10 times a day. Thank you for being you!

    1. Thanks for your comment. I definitely think there is a mix of bloggers, those who blog just for the sake of blogging and those who blog for the stats.

      I know I blog for the enjoyment of it. I would be happy if just 1 person read my stuff.

  11. What a moving post. I’m truly sorry you’re suffering with this. I have fibromyalgia so I can relate. Because of this and neuropathy and migraines I had to leave my job as a children’s librarian of 26 years and I’m now on disability. People I thought were my friends have completely forgotten about me. I think blogging has not only saved my sanity, but my life. I love your blog and I think you’re truly inspiring 😊

  12. A life long friend was diagnosed in late 20’s. I learned much about it from her. It is real, even if it can’t be seen. You really should be amazed with your awesome self. Know you don’t want pity or any of that feel sorry crap, but I get it–I don’t have it, but I get it and think you are fantabulous, doing what you got to do. Beats spending the day in bed. Keep on keeping on. Xx

  13. I find it difficult when I have tired days and really want to do something, so I can imagine it must be difficult feeling that way all the time. I think it’s easy to take for granted what we’re able to do, and only when we’re forced to live a certain way for so long do we realize. Like most typical kids, the idea of avoiding school would have sounded awesome to me too, but I suppose if you don’t have the choice it stops being so. What a lot of people don’t realize is that as human beings we tend to be happiest when we have a steady level of productivity going and feel like we’re moving forward (as draining as work can seem at times.) This was an amazing, honest and open post and you rock for achieving so much despite your ME.

    1. Oh yeah, I think people definitely take for granted how much they are able to do. Its weird the little things you don’t think about. For a while just getting out of bed or washing my hair was difficult.

      Thank you 🙂

  14. Thanks for sharing this. I have Type 2 Diabetes and Arthritis, and the first thing I had to get used to was the level of fatigue I can feel at the drop of a dime. When it takes you 20 minutes to get a shirt halfway on, you wise up really fast. And like you said, lying there because your body’s too tired while your brain is clicking away with stuff you desperately want to write about is frustrating. Soooooo frustrating. I hear ya, sister, and I understand.

    1. Tea, slightly. But I have to be careful because it affects my sleep. Going for a walk, but again I have to be careful because it can make me more unwell. Surprisingly having a nap during the day if I am really exhausted just makes me feel worse. Usually I just sit around doing nothing till I don’t feel so tired.

      1. 🙁 I can’t imagine the pain, (would you call it pain?) that you go through everyday. Does reading help you? Cos your amazing list of books that you have been reading so far is endlessly long 🙂

        1. I have like minor aches and stuff but I wouldn’t say it was painful.

          The reading thing isn’t so bad now but this time last year it was really exhausting to read. I couldn’t read for very long. For a while I couldn’t read at all. I still get tired if I read too much and I’ve noticed I can’t read as fast as I used to be able to but its better now.

  15. I just found your blog! I totally know what you mean. I blog as well but not as often as I would like, I have plenty of ideas but I usually feel too tired to be able to write them out in a blog post that I feel is ‘up to scratch’. I used to write a lot late at night but the past few months I’ve been so tired in the evening I’ve been going to bed super early, which is weird given how much of a night owl I am!

    Anyway, looking forward to reading more of your stuff. 🙂

    Louise

  16. Yeah! I have a condition (rheumatoid arthritis) that also includes chronic fatigue. It’s really rough! I get really down on myself mentally, too, because I have so much I want/need to do. And I can get through most of my part-time work week, most of the time. But it’s hard sometimes.

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