Chronic Illness

Chronic Illness

And What It’s Like Living With It

Photo by Raphaela Vergud on Unsplash

There is so much talk about chronic illness nowadays, and everyone seems to think that they know exactly what it means to live with one.

Often, it seems like it almost has become a one size fits all. There are buzz words, like ‘Spoonies’, and don’t get me wrong, I’m not knocking this, but there’s a lot more to chronic illness than these words.

There are so many people suffering with all manner of chronic illnesses, every day, and the symptoms of those illnesses all take different forms.

I have Facial Arthromyalgia, caused by Temporo Mandibular Joint Dysfunction. Basically, I clench my teeth so much, and so hard, (thanks anxiety), that I have screwed up my jaw, and more often than not, my face feels like I’ve been through a mega intense work out at the gym, except that the associated pain doesn’t ease.

Imagine walking around with your whole head and neck feeling like your legs would after an hour long run.

My TMJD means that I have regular (often daily) headaches, which usually shift to migraines. My neck aches continually, and most of the time, it hurts to eat.

Simple things like yawning, terrify me, because they mean that I will need to open my mouth wide, and when I do this, my jaw cracks, when the cartilage moves out of its proper place.

When my jaw is particularly bad, I have to cut up my food into tiny pieces, or just opt for soft foods. It’s at these times when things like porridge and jelly (jello) are my best friends.

Another nasty side effect is that I find it difficult to sleep. This isn’t because of actual pain at the time, but because I know that when I do sleep, I will begin clenching, and that will make my jaw even worse. I can always tell when I’ve had a bad night, because I always wake up with a migraine.

The thing is, I’ve learned to live with it, and I know when I can push myself, and when I have to just give in, but there are only so many times that you can tell someone that you have a headache, before they begin to think you’re just making excuses.

I guess, the point I’m trying to make is that it doesn’t matter how many buzz words they come up with, or how many times it is explained, we (those living with these illnesses) are really the only ones who know what it is like.

For those of you reading this, who are fellow sufferers, I want to tell you to listen to your body. You know better than anyone else, how much you can handle, and don’t you dare let anyone push you past what you are able to do.

I am standing beside you. I know your suffering, and I know what it is like to fight a battle that no one else sees. You are not alone.


If you’d like to get updates from me once a week, you can click here… 🙂


Li Carter is a writer, artist and crafter. She lives in South Wales, UK, with her family, and five rescue dogs. She’s on Twitter @rbcreativeli , Facebook: Rainbow Butterfly Creative, and Instagram @rainbowbutterflycreative and is the author of My Only True Friend: The Beginning. She is currently working on a new series titled The QuickSilver Chronicles. She is the original Rainbow Butterfly, and wants to fill an ever darkening world with a little bit of beauty and creativity.

A Week For Haiku

A Week For Haiku

A Fortnight-Long Series

Photo by Gabriel on Unsplash

This week has been more than a little rough for me. At first, I thought it was just my TMJD playing up, but it turns out that that, combined with anxiety really can knock you sideways.

I have found myself struggling to write much of anything because of brain fuzz and migraines, so I’ve been writing a lot of Haiku’s. I thought I’d share them here.

I hope you’ve liked them. I figured I’d explain why I suddenly shared a week of Haiku, so.. I guess now, you know.

In the meantime, I am feeling a little less fuzzy, and I am hoping that I can start writing as per ‘normal’ (well, as normal as I get…)


If you’d like to get updates from me once a week, you can click here… 🙂


Li Carter is a writer, artist and crafter. She lives in South Wales, UK, with her family, and five rescue dogs. She’s on Twitter @rbcreativeli , Facebook: Rainbow Butterfly Creative, and Instagram @rainbowbutterflycreative and is the author of My Only True Friend: The Beginning. She is currently working on a new series titled The QuickSilver Chronicles. She is the original Rainbow Butterfly, and wants to fill an ever darkening world with a little bit of beauty and creativity.