Faking It.

Image by Joanne Van Leerdam.

Today I feel completely hungover. 

I haven’t had any alcohol at all in weeks.
I didn’t eat the bread or the fries that came with last night’s burger. 
I’m hydrated. 

This is just my fibromyalgia being a complete jerk. 

By the time I get to work, I will have drawn on every acting skill I have— and that’s quite a few— to present as ‘normal’. 
I will do my job with absolute professionalism: my students will never know how dreadful My body feels. 

After work, I will complete the errands on my to-do list. Those things don’t go away because I feel rotten. 

Only when I come home again can I give in to the pain, the sluggishness, and the desire to just go to bed and moan a bit. 

But they’re right. 
I don’t “look sick”.
That’s because I am 100% accomplished at making it look like I’m not.

Faking It.
#fibromyalgia #FibromyaliaAwareness

Epidural Spinal Injection: One Week Progress Report

Photo by Kris Lucas on Pexels.com

A week ago I had an epidural spinal injection into my lower back to treat constant sciatic pain.

One week later, I have good things to report.
After a rough couple of days following the injection, things started to improve. I’m very happy to report that I’m doing much better now.

Because the weekend was difficult, I stayed home from work on Monday, which was the third day after the procedure. I returned to school on Tuesday, and after spending most of the day on my feet, I was absolutely exhausted by the end of it. An early dinner and spending the evening lying down was a good strategy, as it gave relief to both my lower back and everything else that was hurting.

The injection site was progressively less tender as the week wore on, so was able to lie down and sleep on my back. As the steroids started to do their thing, I began to experience a lot less sciatic pain. I continued to have the consistent pain related to my fibromyalgia, but at least my butt and legs were no longer on fire.

That I began to see improvement on Monday and Tuesday was right on schedule for the time frame the doctor gave me – the injections would start working in 2-3 days and build up effect over the next couple of weeks. So far so good. Now, we wait to see how long that lasts.

The ESI hasn’t made any difference to my lower back pain – that’s not what the treatment was meant to do – but having the sciatic pain diminished makes a huge difference. I know how to manage my lower back and fibromyalgia pain. I can lie down comfortably for rest and sleep – and what a blessing that is!

The one-week verdict is positive. Despite the initial pain and discomfort, the procedure appears to have done what it was intended to do. If the sciatic pain returns, I’ll definitely have the treatment again.

Epidural Spinal Injection: One Week Later
#spinalhealth #BackPain

Post-epidural.

I wrote yesterday about waiting to receive a CT guided epidural spinal injection to treat the constant lower lumbar and sciatic pain I have been suffering due to further degeneration of the disks on my spine.

Actually, I do try really hard not to walk like that …

I am sincerely touched and thankful for every message of support and encouragement that I have received since publishing that post.

In the light of the fact that there are some good medical sites available but relatively few “this is what it was like for me” posts to be found, this post is intended to address that imbalance.

When I got to the treatment room, I was provided a hospital gown and asked to change. I was able to leave my underwear on, so I wasn’t completely exposed.

I was then invited to lie face down/on my stomach on the Ct scanner table. The nurse and radiologist helped me to get as comfortable as I could, reminding me that I wouldn’t be able to move during the scans and injections.

Once I was settled, they did some test scans to give the doctor initial images to work with.

When the doctor came in and introductions were done, he proceeded to wash my lower back with iodine and prepare the injection site.

That was all completely fine until we got to the initial local anaesthetics. Knowing I couldn’t move, I gritted my teeth and made some indiscriminate grungy noises that communicated more than “ouch”.

Then came the insertion, at a precise location in my lower back, of the needle and cannula for the delivery of the rest of the injections.

“Just a scratch now,” said the doctor.

In response, I laid very still but made more ugly noises.

“How is that?” he asked me.

Showing significant restraint, I responded with “I’m not sure what scratches you, but it’s very different than anything that usually scratches me.”

He didn’t say anything, but the nurse and radiologist laughed at that, which I found rather satisfying: I may be lying prone and vulnerable while a very clever person with a tendency toward understatement sticks sharp, pointy things into my spine, but I’m still hilarious.

The radiologist scanned my back again to make sure the needle and cannula were in the right place, and the doctor proceeded to administer the prescribed anaesthetic and steroids.

In the course of the procedure, counting anaesthetics and steroids, the doctor made multiple injections .
It wasn’t unbearable but it definitely wasn’t painless. I wouldn’t have wanted it to happen without the local anaesthetics, but I could still feel the injections.

After the procedure, I had to lie down with my upper body elevated for about 90 minutes before being declared able to go home.

The advice given to me before being allowed to leave was as follows:

  • Do not lie flat for 12 hours as nobody wants the anaesthetic heading north instead of south, which could cause significant complications.
  • When the local anaesthetics wear off, I would probably not feel both my original pain and some pain around the injection site. .
  • The injection usually takes 2-3 days to start taking effect. Full effect is generally reached after 10 days to 2weeks.
  • Rest for a couple of days to give things the best chance of healing.
  • The injection deals with the symptoms, not the actual degeneration in my back. I will still have the same limitations as before, but hopefully with a lot less pain.

I came home feeling quite tender and a bit jelly-legs, which I am told is normal.

I spent the afternoon and evening in my recliner with my feet up, changing the angle of the chair every now and then. I made sure I drank plenty of water, and that I got up regularly for necessary short walks.

I have experienced an increase in my fibromyalgia pain — which is a different kind of pain altogether from my back and sciatic pain, so it is easily distinguishable. Such pain flares are totally standard whenever my body experience stress or trauma. It’s fair to say that’s not helpful in the sleep department m, either.

Twelve hours later, the injection site is fairly painful , so lying on my back and trying to sleep isn’t much of an option right now. Some bruising is coming out, but I haven’t had any bleeding from the injection site. There is no significant swelling, redness or heat in the area, so I am assuming this is just par for the course and not anything I need to follow up.

It was a great relief to get into bed and lie down, albeit with an extra pillow, but even with my usual pain medication, sleep seems unlikely at this point. Not only am I a rubbish sleeper at the best of times, I have to lie on my back to sleep — I can’t ever sleep on my side or stomach because it’s just too uncomfortable for my back. So, 2.43am seemed like an opportune time to write an update post.

I am really hoping that I do see some improvement over the next couple of days, and that some consistent relief from pain is imminent,

Stay tuned.

Epidural.

I am writing this while waiting for today’s instalment of treatment on my problematic lower back and spine.

An accurate representation of my life.

I’ve been having increasingly constant and aggressive pain in my back and sciatic pain in both my legs over recent months. I cannot sit, stand, or lie down without pain, which is both affecting everything I do and depriving me of sleep.

My neurosurgeon has prescribed an epidural injection of steroids into my back, done under CT scan guidance.

I know it is a treatment a lot of people have, but that doesn’t stop me feeling anxious about it. I am looking forward to the respite from constant pain, but it’s not a process I am looking forward to.

So, I am filling in the time by wondering about the meaning and origin of the word ‘epidural’. It’s a frequently used word in relation to one of the kinds of anaesthetic used during childbirth, and people generally understand that is blocks pain from the waist down, but that is not my circumstance. I’m definitely not giving birth today!

The Macquarie Dictionary definition, while accurate, was not entirely helpful.

Having looked up ’epidural’, I then had to look up ‘dura’.
Just like that, I’m already learning things I didn’t know.

So, I can deduce that I am having an injection through the tough outer lining of my spinal cord.

To be honest, this research isn’t really reassuring me about the procedure at all.

According to Etymonline, the prefix epi- means on or above, and came into English from Greek.
The term dura mater dates back to about 1400 AD, coming from the Medieval Latin ‘dura mater cerebri’ which translates to “hard mother of the brain,” a term which was borrowed from the Arabic ‘umm al-dimagh as-safiqa’, which means “thick mother of the brain.”

And so I wait, informed and still apprehensive of what is to come.

All I can say is I really, really hope this works.

Fairy Lights: A Reflection on Brokenness at Christmas Time.

I wrote this poem a while ago, but it seems so relevant at this point of 2020. Every time my Christmas fairy lights flick on lately, I think of this poem.

It’s the time of year when people want me to attend parties and end of year gatherings for work or other groups. They want me to sparkle, but I feel as though I am still so tangled and frayed and broken, I just can’t.

Yet again, I find myself ‘faking normal’ and smiling and nodding while wishing I could go home and go to bed instead. It’s a well-practised skill that, quite honestly, I wish I had never had to learn in the first place.

Hence my choice of new Christmas decoration, hung lovingly on my tree in honour of the mess that 2020 has been.

It’s fair to say I enjoy this bauble far more than I have enjoyed this year.

Photo by Matheus Bertelli on Pexels.com

Just like a bundle of fairy lights, stowed carelessly,

I am a mess of entangled emotions

A jumbled catastrophe, knotted and messy,

Some parts are missing, some coloured glass broken;

Synapses misfire in slightly frayed wires:

There’s danger in causing my power to surge,

I don’t always light up the way others desire

But I can be quite lovely when I have the urge.

©2017 Joanne Van Leerdam

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6 Things to know about Invisible Disability Awareness

Everything this post says is true.

I, too, suffer from chronic, invisible illnesses.
I have fibromyalgia. I have a permanent back injury. I have depression and anxiety, and I work hard to keep those under control. I strive to take good care of myself, and to manage my conditions. I avoid aggravating them. I also make every possible effort to stay positive and to do the things in life that I enjoy doing.

The fact is, though, no matter what good care I take care of myself or how positive and proactive I am, I cannot heal or cast off my invisible disabilities.

The debilitation is real.
The exhaustion is real.
The misconceptions are real.

And the judgement? Many people would not be willing to believe how real, and how consistent, and how very, very toxic that is.

The critics are only right about one thing: I don’t look sick.
That’s because I’ve been faking being well for years.

Brainless Blogger

This year Invisible Disability Awareness Week falls on October 18th to 24th.

According to the Invisible Disabilities Association, the term invisible disability refers to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunction, brain injuries, learning differences, mental health disorders, as well as hearing and visual impairments. They are not always obvious to the onlooker, but can sometimes or always limit daily activities range from mild challenges to severe limitations and vary from person to person

Invisible Disabilities You ShouldKnow

6 Things to know about Invisible Disability Awareness

Unseen

Because Invisible Disabilities are not visible to the eye it can cause issues. Some of these issues are judgments when we use disabled parking or disabled bathroom stalls and others feel the need to make an issue out of it… because we do not Look disabled.

1994-1995 Survey of Income and Program Participation (SIPP) found that 26 million Americans (almost 1 in 10) have a severe disability, while only…

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Uhtcare

Uhtcare— pronounced oot-care — is a lovely Old English word that dates back to the Anglo-Saxon poem ‘The Wife’s Lament’, and was probably used throughout medieval times.

I heard it for the first time today in the Something Rhymes With Purple podcast by Susie Dent and Gyles Brandreth.

Image by pasja1000 on Pixabay

Uhtcare translates to ‘dawn care’ and relates to the anxiety of lying in bed worrying about the coming day before it has even really started. It comes from the OE words uht meaning before dawn and cearu/caru meaning anxiety.

It wasn’t just the beauty of the word that struck me, but also the timeliness of hearing it today. Completely forwallowed after a night of very little sleep courtesy of painsomnia, I could totally relate to that feeling! I was lying in bed before dawn this morning wondering if it were at all possible for me to actually make it to work today. I thought about the lessons I wanted to teach, and how much effort it always takes to ensure that a substitute teacher has everything they need to deliver my lessons effectively.I also felt incredibly guilty about the fact that we have only just returned to face to face teaching, and there I was thinking about staying home.

Still, I knew I wouldn’t be a safe driver today, and I also knew there was very little likelihood of me teaching anything effectively at all.

So, I got up at 5.45 am and made sure all my lessons, material and extra notes for my replacement for the day were loaded in the school’s system and ready to go.

Image by MichaelGaida on Pixabay

Given that we don’t really have an adequate alternative for such a useful and expressive word in today’s English, It is a shame that this word has fallen out of use. Maybe it’s time to bring it back.

Uhtcare: lying awake before dawn, worrying about the day.
Anglo-Saxon/Old English
#English #words #blogpost

Sources:
Something Rhymes With Purple podcast: Vedettes 15/9/2020

Ten Rare But Useful Words Everyone Should Know

Anglish Wordbook

Fibro Flares and Self Care

It’s been a rough week, both emotionally and physically. Sleep has been patchy, which isn’t unusual for me, and my back pain has been relentless. 

Naturally, my fibromyalgia decided to join the pain party with some extra bass beats and neon flares of its own. 

Yesterday I chose to work through it. I’m a teacher working from home and my students are depending on me. It’s not that easy for substitute teachers to step into a remote learning classroom and make things happen the way I want them to. And, you know, I didn’t have to drive to school, which helps when you wake up in crushing pain. My classes were great, and spending ninety minutes with Genghis Khan in my Year 8 History class was a good distraction. 

When my classes finished, I had to go to town to pick up my much needed new glasses, I’ve been struggling with eye fatigue while doing so much remote teaching, and it’s fair to say that the curriculum planning and lesson preparation don’t stop just because we’re working off campus. It was a 45 minute drive, but I just went there, got my glasses, and came home. I am not interested in shopping or spending any more time around people than I need to right now. 

When I got home, I rested. Dinner was easy – the soup was already made, and just waiting for us to enjoy it with a spinach and feta bread twist. 

I really hoped the evening of rest would be enough to make the pain flare back off. 

Nope. 

So, by necessity, this weekend has to be a quiet one. 

My new glasses are great, but I’m not going to be spending much time on screen. I’d love to read a book, but my hands hurt too much to hold one for long. 

So, I will do what needs doing, and that’s it. I have a couple of new podcasts to road test, and then I’m going to indulge in an audiobook. I’ve got my recliner, my quilt, my cat, and the sound of rain falling outside.

Choosing my content is important for my mental and emotional wellbeing. I’m taking care to exclude anything negative, so I’m avoiding the news and social media. Throughout the whole Covid-19 pandemic and working from home experience, I have found that to be a good strategy for keeping my mental and physical spaces positive and healthy.

I’ve also got my pain medications handy in the drawer just beside me, because those things are my friends. It’s all well and good to be idealistic about managing pain and not relying on drugs, but on flare-up days, there is absolutely zero chance of that happening. A girl has to do what a girl has to do. 

I have good coffee and plenty of water on hand. And, at some point, I’m going to have one or two of those fabulous cookies from the care package I received in the mail yesterday.

So, here’s to a quiet weekend. I’ll be looking after myself, and I hope you are able to do the same.

At least raccoons look cute with dark shadows under their eyes.

And On The Third Night, She Slept

Never underestimate the blessing of sleep!

Two nights of almost zero sleep had left me way beyond forswunk and very near completely useless by Thursday afternoon. 

A frequent flier on Air Insomnia, I have been through this before. I’ve always been a lousy sleeper, and ever since chronic back pain and fibromyalgia became part of my life, they have always been quick to join the party and keep me awake long after I wish to be unconscious.

So, as I have done so many times before, I just kept going. I taught my classes with the same degree of professionalism and confidence that I demonstrate every other day, with the help of only marginally more caffeine than usual. 

Once classes were done and my work for the day was finished, my recliner was my refuge. I put on a podcast and closed my eyes… and still didn’t sleep. Discouraged but comfortable, I just stayed there and rested… like I had a choice. 

A very early night was definitely in order, and I made sure I got one. Still awake at 11pm, I tried not to think about the state I would be in after another sleepless night. That kind of thinking doesn’t help anyone fall asleep, ever. So, I closed my eyes, listened to my regular radio program, and tried to slow my breathing and my thoughts. 

I drifted off at some point after midnight. Seven glorious hours later, I woke up when my alarm went off. 

Such relief! I feel so much more able to do what the day demands and meet any challenges that might come along. 

There is a reason they use sleep deprivation as torture, after all. It can be physically painful and psychologically overwhelming. I’m so thankful for the sleep I got last night, and I certainly hope that particular cycle of insomnia is finished. 

And now, I go once more unto the breach, dear friends. Online classes, lesson planning and my email inbox await me, and I must imitate the action of the tiger. 

Vetiver Oil: A Grass Roots Therapy For Better Sleep

If you suffer with insomnia, or if you have trouble relaxing at night, you might find this post helpful.

An Aussie Maple Leaf, adrift on the wind...

One of my most consistent problems with sleeplessness is that I can be totally exhausted, but still unable to actually drop off to sleep. 

That’s mostly because of my fibromyalgia, but it is complicated by back pain on those nights when my pain relief medication fails to cut the mustard, as it sometimes does.

Because I know from past experience that prescription sleeping medication causes my whole system to lag, and because of the strong pain killers I need to take for my back as well as my fibro, I feel very strongly about not having those other drugs in my regime.

So,I recently visited my friendly local alternative health practitioner and asked, “What can you suggest to help me sleep?”

She suggested Vetiver Oil, diluted in fractionated coconut oil. The instructions say to apply it under both big toes and to the wrists, to inhale deeply on going to…

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