top of page

You're going to be okay.

Fibromyalgia is very deceptive. Sometimes I feel great - that I could take on the world, that I'm finally recovered, maybe I could climb a mountain and get out there and do ALL the things I've been dreaming of doing.

And then...

Then I fall.

I fall hard and fast.

Into pain and exhaustion, and I can barely move. I sit on the cool floor in my kitchen sobbing because I cannot even make myself a decent, nice meal. I feel useless. What purpose do I serve when I am so utterly, utterly useless.

I long for purpose - in the idyllic sense of the word - a reason to get out of bed in the morning and throw open the curtains. A reason to exist in a body that is in pain. In the depths of my heart, I have a hope - the only hope that keeps me going - but I do not even know how to bring such hope into fruition. So, I let that be the reason I climb out of bed and throw open the curtains.

Just... Keep hope alive.

Everything I do I am required to think about the aftermath of it, how it will effect me even a week later sometimes. If I go out to the city just for a trip, will it throw me for a day, a week, a month? Sometimes I'm fine - sometimes I'm not - fibromyalgia gives me no warning. I am forever frustrated at how I have to mandate my life by this condition. I feel trapped and contained - and I have no idea what to do.

Most people do not enter into my world - that much I have come to a full understanding of. I have to go out into the world, but doing so brings only more pain and I do not have an unending amount of strength for that.

So I don't know what to do anymore.

Of course I want to go out and experience things - I want to go on adventures, I want to travel, I want to paint my house, I want to garden, I want to enjoy time with my family, I want to make friends, I want to life...

The other day...I just wanted to go to the city, to the library, and sit amongst the books. I really, really just wanted to see books.

I love books so much.

I want so much to just go to the library in the city and sit amongst the books. Is it to much to it to much to ask just to not be in pain anymore, so I can sit in a library!

Is it to much to ask to just go to a church and not leave worse than when I entered? I just want...I want so much to meet people, to not have to suffer for that wish. I'm crying. Excuse me...

My Dad often tells me that if I am in pain, I may as well do the things I want to do - and I agree with this sentiment, indeed, it is a motto I have tried to live by. Why let pain dictate what I do if I am just going to be in pain anyway? Why stay at home and mope - better to go out into the world and endure the pain, be with people, be amongst the beauty, and enjoy it all - the pain will be there no matter what. However, it's getting a lot harder to do now that exhaustion is added into the equation.

I'm not talking about being tired from a lack of sleep, either.

I'm talking about a sheer physical inability to move my body. My mind is alert - often too alert - but pain has made me so exhausted I can't get moving anymore. There is no petrol in my engine, I can't get myself going.

And its awful. I hate it. I cry, a lot - because I'm thirty-two and I shouldn't be like this.

I desperately want to be a very active person - which is very laughable if you look at me and my pear shape. If I could, I would go to the gym, or jog like my Dad. Recently I've been trying really hard to work on my physical strength with an exercise physio - and I have noticed a difference, a small difference - in the way I can hold myself upright when I'm in pain.

But it isn't easy. It is going to be a slow, long road - but I am hoping I can recover some of my strength back through this path. But it's been so hard - and it hurts so much - but I know I have to keep going. Already I know I am doing much better than I was at the beginning of the year - it's just sometimes hard to see that when sitting here, with a headache, in a bad flareup.

Getting things done when I'm like this is very difficult - and I try not to be to hard on myself, though I am. I also, really - I really hate complaining. Even writing this blog makes me feel like I am complaining. Keep a stiff-upper lip and all that, you know. I feel uncomfortable sharing about my condition because I don't want to be a victim of my circumstances.

When I have a flareup my aim is to just have my little routine that keeps me ticking over - writing - walking - family - and amongst that if I can do one extra thing a day I'll be happy.

Today I pruned some hydrangeas in my garden. Five of them. Probably over did it - but I got really into it, and I had to prune the manic vine that had gotten into them as well so...that was some work.

I love gardening, and I love my garden. If I had more strength, there is so much I would love to do with my garden and my little house.

We all have dreams.

But for now, I'm just happy I pruned five hydrangeas.

Sure, there is now a huge mess to clean up, but I figure I'll do that tomorrow. It is, after all, going to be another beautiful autumn day tomorrow. ^_^

There was a story I used to love when I was a little girl called: "The Little Engine That Could."

Even to this day, I often hear myself repeating the phase: "I think I can, I think I can, I think I can."

If there is one thing I have come to understand, it is the power we have in our thoughts. It is the one thing I know, fundamentally, that I have control over (and the one thing I refuse to loose control of). The ability to change a negative thought into a positive one is the most powerful weapon and tool someone can weld. As someone who has sat on bathroom floors, kitchen floors, living room floors - crying - alone - during long, lonely nights - all I have wanted is someone to tell me "It's going to be okay. Kylie. It is going to be okay."

Because quite often, the presence of another person aids you in shifting and directing your thought patterns - this is why, if you're in a bad way, it's always good to call someone and if you can't call someone, get up, and put a podcast on, or music, or audiobook, or your favourite television show (mine is Stargate SG1) something with language in it. Something that directs your thought patterns jarringly away from whatever spiral they've been in. This is a technique I have often used.

Break the spiral.

But then, what if it's just me, at 2am in the morning and I'm alone, in the darkness, in an empty house and I'm caught in that spiral:

"The morning will come. This will not last. The morning will come. This will not last. The morning will come. This will not last. It will all be okay. It will all be okay. You are okay."

It becomes the same as a little train telling itself: "I think I can, I think I can, I think I can."

Change the spiral.

This is something I learnt when I was a little girl. I was plagued by horrendous nightmares. Looking back now as an adult I've come to realise that I was perhaps experiencing a vague recollection of a heart operation I had when I was four - as the nightmares had an eerie similar vibe to someone being awake during an operation. It was either that, or I was seeing myself in the third person being operated on - and - to be honest - that's pretty scary stuff. I couldn't remember the operation itself, but, perhaps my subconsciousness was trying to process it and spat it out as nightmares. Anyway, that's my adult-y assessment of that situation.

I would sleep outside my parents room, on the floor in the passage, just to feel safe.

I also dreamed up other things - I recall I was scared, for a time, of going near windows because I thought I would be snatched out by monsters. There was even a time where I was convinced my entire family was going to die a terrible, painful death in a volcanic eruption. I would dream of the ground opening up beneath my bed and falling into a pit of molten lava. I had a wild and vivid imagination.

I cannot recall when it was, but at some point during this period, my Dad told me something that profoundly changed my life, and how I treated my nightmares from then on.

"You are the one who controls your dreams, go back to sleep and create a new, happy ending."

And that is what I did. I took control of my nightmares, and I began to craft stories out of them. When I woke in fear, I would roll back over, and rework the ending into something with a better, more positive outcome.

To this day, I still get nightmares. My imagination is very good at coming up with creative ways of terrorising me while I sleep, but I am capable of altering the spiral.

Often I now have novel like dreams, fully fleshed out adventures - characters, plots, whole worlds built - and I like to believe it is due to a considerable amount of practice since childhood.

The advice Dad gave me for my nightmares still helps me during the dark hours of the night when I'm in pain. I am the one who controls myself, my thoughts, my mind - change the spiral so it's no longer a nightmare.

Keep hope alive.

It's all going to be okay.

The morning will come. This will not last.

You're going to be okay.

The morning really does come. It really does not last.

And you're okay.

38 views0 comments

Recent Posts

See All
bottom of page