Tuesday 16 October 2018

Things I Want You to Know as a Fibromyalgia Sufferer

Many of you will know that I have Fibromyalgia. As a condition it can be hard to describe how it effects you and how it makes you feel.

The middle section of a woman in PJs, under a blanket with a hot water bottle

The following guest post by Sarah explains some of Fibro and what comes with it. I'm honoured to share her post as my first ever guest post! I relate to it so much! 

Things I Want You to Know as a Fibromyalgia Sufferer.

Fibromyalgia it is a strange illness, something that seems to be, becoming more common.

It is hard to diagnose and is often more done so via elimination than using tests. Though of course, all Fibromyalgia sufferers have issues with pressure points, accidently touch one of those we may just hit the ceiling.

As it is such a misunderstood illness I thought I would put together a few things I want others to know about me when it comes to this mysterious condition.

I still want to be hugged.
Just do it gently please, everything hurts some days so just be considerate of that. Don’t bear hug me and ask first if it is OK.

My scalp hurts, so no I haven’t washed my hair.
Honestly there are days where everything hurts, the touch of my clothes, even my scalp. So yes sometimes it will look lank and greasy but you know what, I just can’t take more pain today.

I’m sorry I cancelled again.
I don’t want to not see you, I don’t want to miss out on all the fun times and occasions. However, my body cannot cope.

Vibrations Really Get Me.
I worked out a while back that when it comes to sound, it the vibrations of the music that really get me. It can leave me in a bad place for days after.

Yes, I Slept For Hours, Yes I’m Still Fatigued.
My body doesn’t restore its energy as it should, so yes, a good sleep can do nothing for me.

Bright Lights, Loud Noises, Overly Powerful Scents All Set Me Off.
It’s a nightmare but its true. Anything can set my body into a flare and I can’t control it at all!

Yes, My Face is Swollen.
As are my hands, wrists, ankles, basically everywhere soz!

A Good Day.
Just means I’m coping better today. I’m not cured, it’s not that there is not pain. I just feel like I’m coping more.

My Body Can’t Regulate Its Temperature.
If I’m hot I’m HOT, if I’m cold I’m COLD and it is so hard to get my body to regulate itself and warm up or cool down. So yes, I’m a sweaty or shaking mess.

That Random Diet, Its Not Going to Help.
I know you mean well, but seriously if there was something to cure me, I would have done it LONG ago.

I guess one thing I hear people say about Fibromyalgia a lot is, it’s just lazy people, finding a reason to be lazy. I can 100% day it isn’t.

My mental health has been bad as long as I can remember. However, I was just starting to enjoy life a little again.

I was working with the Wildlife Trust, I was doing a Uni Course.

Then I got swine flu and later came the ME and Fibromyalgia diagnosis. Believe me, I would do anything not to suffer this pain, the issues that come with it. It’s real and if I could share 5 minutes of how it feels with you I would. But then I also wouldn’t wish this on you at all.

So next time someone tells you they have Fibromyalgia and you want to roll your eyes thanks to the main stream media. Please don’t.

Just look after them, it is something you cannot comprehend unless you have suffered yourself.

Author Bio: 

Sarah is the creator behind Life in a Break Down, UK Bloggers and Simply Saving and one half of the duo behind UK Lifestyle Hub. She suffers from a number of chronic health conditions and is often found cuddled up on the sofa with a movie and her pets. Follow her on Twitter or Instagram too!

Mummy Snowy Owl

1 comment:

  1. As a person that suffers with this disorder I know what you feel every day and no one cares