Fibro-my-Sunday.

Image by Jordan_Singh on Pixabay

My plans for today are not optional. That is a luxury rarely available to me.

When I woke up, though, I realised my body has other ideas:

Me: “Come on, legs. You can do it!”
My legs: “No. We can’t.”
Me: “You have to.”
My legs: “Fine. But we’re going to make you suffer.”
My back: “I’m with them.”
My fingers: “Us too!”

I got up and showered. I needed the hot water for my back, but the water hitting my skin was painful.

I dressed, but then had to change into something made from softer fabric that didn’t hurt my skin so much just by being against it.

I downed my medications, hoping they would work quickly. They didn’t.

I drank my coffee, hoping the caffeine would make a difference. It didn’t.

I can’t take any more pain killers for hours. I can have more caffeine, though, so that is definitely happening.

This is one snapshot of one morning. One morning that is complete typical of many others in my life, and in the lives of other fibromyalgia sufferers.

And now, I am off to a full day of rehearsals that I have to attend because I am the director.

Today is going to be an exercise in perseverance and in drawing upon my actor’s craft. The role I play today needs to be motivated and excited, and able to project that motivation and commitment into my cast and crew.

I cannot fall over. I will not fall over. That is, at least, until I get home.

Tell you what, though. I’m glad my other half is cooking dinner, because I’m already exhausted.

How can insomnia be a good thing?

This post struck a chord with me. I hate my insomnia, but because of it, I have written some incredible poetry at 3am.

I do try to manage it, and to practise good sleep hygiene, but sometimes my pain levels and my brain conspire against me.

On those night when I am not able to write, I find listening to talkback radio, a podcast or an audiobook helps me to relax and and least rest while I am awake.

I’d love to know what works for you.

Fibromyalgia Explained.

Since I began posting about my experiences of Fibromyalgia, a number of friends have asked me to explain what it is. I always start with “I can really only tell you what it’s like for me…” 

I was recently introduced to a video by Dr Andrea Furlan, a pain specialist from Toronto, in which she explains the symptoms, possible causes and treatments for Fibromyalgia far better than I ever could. While some GPS are still fairly dismissive of this disease, Dr Furlan explains with empathy and understanding of both the physical and mental effects of Fibromyalgia on those who endure it.

Even though everyone experiences it a bit differently, it felt as though she spent most of the time actually talking about me. This tells me two things: she really knows what she is talking about, and she is a very good communicator. 

So, if you want to know more about Fibromyalgia, take the time to watch this video and find out why the people you know with this condition I find it so debilitating.

Things I Am Thankful For Tonight

After two ridiculously hot days –40C or 104F–and a busy first week of the school year, my fibromyalgia pain is going nuts.

It’s currently 11.35pm and still warm out, even though a cool change came through a few hours ago and dropped the temperature by ten degrees in as many minutes. It’s also pouring rain – and I’m not going to complain about that!

I am lying in bed listening to the rain, hoping my pain meds will work quickly, and trying to focus on positive things instead of feeling miserable.

So, in no particular order, here is my list of things I am thankful for tonight:

  • Pain medication
  • Ceiling fans
  • Cool changes
  • Rain
  • Three seasons other than summer
  • My bed
  • Total adoration from Abbey the Labby
Abbey the Labby: so clever, she’s on Facebook.

Painsomnia and sleep deprivation

The term ‘painsomnia’ is perfect for describing the impact of chronic pain on the sleep patterns of those who live with conditions like Fibromyalgia.

This post touches on so many aspects of my life with both Fibromyalgia and back pain.

I’m thankful to The Brainless Blogger for writing so clearly and honestly what many people struggle to explain.

If someone you know has a chronic pain condition, you need to read this and share it with everyone you know.

Brainless Blogger

So I’m going to start with this tidbit: The brain literally starts eating itself when it doesn’t get enough sleep.

AHHHhhhhhh!!!!!!! My brain is EATING itself. WTAF!

Not cool.

Painsomnia and sleep deprivation

Other issues with sleep deprivation can include:

  1. Impacts short-term and long-term memory
  2. Concentration becomes impaired along with problem-solving abilities and even creativity
  3. Mood instability- obviously lack of sleep can make a person cranky as all hell. But long term it can be comorbid with anxiety and depression and make depression more intense
  4. Less than 5 hours a night can cause your blood pressure to increase
  5. It increases your risk for Type 2 Diabetes
  6. It increases the risk of heart disease
  7. It can lead to poor balance and increase the likelihood of falls
  8. Affects immune system and it may take you longer to recover from illness
  9. Increases the chances of obesity (source: Healthline)

And if that were not enough there is…

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FibroMyFriday

The aim of this post is not to complain. My spirit is still quite positive, albeit a little weary after working hard to tick things off my “do or die” list this week. Instead, my purpose is to raise awareness of what it’s like to live with Fibromyalgia. 

People cannot see my illness. It’s easy to feel sympathy for someone in a cast, a wheelchair or a hospital bed. I notice an immediate difference in people’s responses on the days I need to use my walking stick. Some are kinder, and most are more physically careful around me. 

Of course, there are always some who couldn’t care less about someone with a cane, but there is no point losing time or sleep getting upset about them. Their attitude only highlights the good in others’. 

My disease is invisible, although some of its effects are not. I may look tired, or upset, at times. My emotions sometimes get a bit messy, although I am a good actor so most people don’t know that. 

After a busy and somewhat stressful week, my body is letting me know how unimpressed it is. 
My pain levels are in the “stupid” range. 
My legs don’t want to bend anymore. 
I have zero need to take my pulse because everything is throbbing. 
Even  typing this is slow because my fingers hurt too.

To anyone else, I probably just look like someone in a recliner, covered with a quilt on a cold night, typing on her iPad. The truth is, I want to go to bed but I don’t want to move because I ache so badly.

I have medicated, but it’s not touching the pain. That’s always good. 

In a further act of bodily insubordination, my very dodgy spine is giving me spasms— yet another an indication that I have probably (read: definitely) overdone it, yet again. 

I don’t want sympathy. I don’t want medals or admiration, or people telling me I’m brave.

What I want is for people to understand that Fibromyalgia and other “invisible illnesses” are not imaginary. They are not something we adopt because they are “trendy”. 

Fibromyalgia hurts. And it sucks. And it doesn’t go away. 

And if you think I “don’t look sick”? Just remember, you can’t see my superhero cape, either.