The Paper Kind

Creative living.

5 Things I Learned From Having CFS

It has been almost exactly 2 years since I was diagnosed with Chronic Fatigue Syndrome so I thought I would do a little post sharing what I’ve learned from having CFS.

5 Things I Learned From Having CFS

Bedtimes are mandatory.

In the past if I wanted to stay up till 3am reading fanfictions I could do that. Now I have a bedtime, it’s like I’m a child all over again. I need to be in bed by 9 and I need to get 12 hours of sleep otherwise I’m going to feel like death in the morning. I miss being able to stay up all night, I mean there is a very good chance I was going to regret it in the morning but I want control back and I want to know it’s my choice to stay up and regret it later.

Audio books are magic. 

Despite just saying that I need 12 hours of sleep a night, I actually have real problems getting to sleep. I would love to talk to whatever sadistic god who decided to create an illness which causes you to be constantly tired and be unable to get a decent night’s sleep. It’s not even funny. Anyway I’ve found that audiobooks are fantastic for those nights I lie in bed unable to sleep. However I have found that if you are able to get into that half awake half asleep state we spoonies pretend to call sleep you’re going to have some mighty weird nightmares if that audiobook is still playing. I didn’t realise it was possible to have nightmares about NASA. Turns out it is.

Disabilities aren’t inspirational.

I feel weird calling the thing I have a disability, it’s disabling but I don’t feel like I have a disability. But I have been given a new insight into what it’s like to have a disability and here is the thing. There seems to be this idea that having a disability makes you inspirational. It doesn’t. Because the people you see that are called inspirational tend to have a visible disability. But they aren’t any more special than everyone else. Here is a secret about people with disabilities, they are just normal people, exactly like you and me. They didn’t choose to have a disability. So basically what you’re saying is “good for you living your life even though you’re different”. Being different and looking different doesn’t automatically make you inspirational.

Invisible illnesses suck. 

I recently had a talk in college about equality and diversity and one of the interesting things I got from that is the vast majority of people at college with disabilities have invisible ailments. I think this is something that it’s really easy to forget about, most illnesses are invisible. Just because someone looks fine doesn’t mean they are.

People don’t think I have a harder time because I don’t look sick. But in reality it is harder for me to do tasks that others would find simple. I buy things which I hope will help my tiredness. I spend large amounts of time managing my life so my CFS doesn’t impact it too bad.

Really what I’m trying to say with this is be tolerant of people, you don’t know what’s going on and you can’t assume that someone is okay just because they don’t look sick.

A sense of humor helps. 

When you have a chronic illness you need to find ways to laugh at it. Because having a chronic illness sucks, don’t let anyone fool you into thinking it’s all sunshine and daisies. But I also can’t spend my whole life sitting around thinking about how shit it is (I mean I do occasionally do that anyway). So I find ways to make fun of it. I laugh at my latest brain fart or that time my ovary committed seppuku. Because the only other option is hiding in a corner and crying.

Thanks for reading.
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26 responses to “5 Things I Learned From Having CFS”

  1. Wise, wise words Emma. My other half has fibromyalgia and struggles to balance work / family responsibilities and looking after himself properly. He gets very angry sometimes – hating the condition that limits him or has stopped him from doing some of the things he once loved.
    All the best to you and hope the future is nothing but great for you.


  2. Apparently we heal while sleeping. So my doctor tells me good sleep is no. 1 priority. And yes, invisible illnesses suck because people expect you to be normal and because you don’t look ill, people tend not to cut you slack. But I do think it’s better than having cancer. That’s what I tell myself on really crappy days. x


  3. I have to digest this post. I didn’t know much about CFS, I thought it’s just some tag they put on people who always suffer body malaise like me… I better try to understand this one…


  4. I hate the sleep thing. Surely if our bodies need sleep they should go the heck to sleep but nooo. And then of course you get the didn’t sleep, feel like crap so can’t sleep so feel worse cycle. Argh!


  5. I recently found a great getting to sleep trick: start at 100 and count down to 1 in first 1s, then 2s, then 3s, then 4s and so on until, if you’re still awake you get to doing it in 20s then go back down again. Bores you to sleep in no time!

    Liked by 1 person

  6. The non-negotiable bedtime is so true! I also use audiobooks to help me fall asleep. I love Jasper Fforde books for this because they are interesting, but not disturbing in anyway.


    • Hmmm I’ve never read any Jasper Fforde. Will have to look into that. I’m really picky with my audiobooks. I only buy ones I’ve already read. Yeah I know that’s weird but I have problems focusing on audiobooks.


  7. A really good reminder to refrain from judging others. You never know what they might be feeling or going through!


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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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