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.

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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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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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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One Step Forward, Two Steps Back

There are many things I have learned to do again, albeit differently, since my spinal surgery 15 months ago. 

It seems, however, that stairs are still my nemesis. I can manage one or two steps if I go slowly and carefully but, as I discovered tonight, walking up a whole flight of stairs still causes me significant pain. 

We went out for dinner with friends, who had booked at a first floor restaurant that had no elevator. It did, however, have a beautiful circular staircase. 
Beautiful… and an enormous challenge.

I went very slowly, but by the fifth or sixth stair my lower back was screaming. Before I got to the top, I could feel the sciatic pain in my butt and staring to extend down my legs. I couldn’t stay there, so I had to either keep going or go back down. Slower still, and even more carefully, I made it to the top.

The first thing I did was hit my friends up for whatever analgesics they had. One had ibuprofen, the other had paracetamol. I took both, as my doctors have instructed me to do when I need to. I also chose not to sit until my meal was delivered, even though standing up in a large room of diners made me feel very self-conscious.  

It didn’t help that some people were quite obvious about the way they looked at me – and all I was doing was standing up. Once again, it reminded me of how much harder it must be for those whose differences or disabilities are more obviously noticeable.  

Dinner was delicious, but as soon as I had finished, I stood up again. We took the rear door out of the pub, as it opened onto the driveway. Even through it was quite a slope, it was still easier than the stairs. 

It’s disappointing that the establishment had not been more thoughtful about accessibility. An assumption that everyone who visits is able-bodied enough to use the stairs is ignorant at best. Perhaps if there were a “disabled access” sign pointing to the rear of the building, I might have been able to enjoy my meal and the great company without either kind of discomfort. I cannot imagine I am the only person who would benefit from that, 

And, if you’re ever out for dinner and there’s someone standing up for most of the evening, or doing anything else out of the ordinary, just know they have their reasons and be kind enough to pretend you haven’t noticed.

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. 

Things For Which I Am Thankful Today

Today, I am feeling very low. So, I am trying to focus on things for which I am thankful. 

I know it won’t fix things, but it’s a positive distraction from my own misery. 

Most of these are in no particular reason, although the first four are in the right place at the top of the list of what I am thankful for today: 

  • My best friend. For so, so many reasons that I can only barely start to count. 
  • Encouragement from friends. Even when life really sucks, they have my back. 
  • My dog. Abbey the Labby always knows when I need extra love. 
  • Scout Kitty purring on my lap. She, too, has been extra attentive. 
  • The lovely quilt with which I have wrapped myself. It was a gift from my best friend at Christmas time, and given that I can’t hug her today, it’s the next best thing. 
  • The audiobook I’m listening to. It’s good to give my mind something else to do. 
  • Peanut butter on toast. 
  • Coffee. In all honesty, I am thankful for coffee every day. You all should be, too… because even if you’re not drinking it, I am. 
  • Downtime, and the fact that I got all those exams and reports done. I really don’t think I could have maintained that pace much longer. 
  • The fact that I do not have to sit upright on stupid courtroom seats for one single minute of today. My spine has been brutalised this past week. 
  • Pain medication.  Enough said.
  • A Poet’s Curse. I’ve been reading it for therapeutic reasons last night and today. It helps.