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.
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.
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
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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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.
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.
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.
Here’s a Public Service Announcement for everyone thinking of breaking out of isolation and going somewhere else for the Easter weekend, especially those Australians who seem to think that the rules apply to everyone but them.
Just. Stay. Home.
And the places you’re thinking of going? They don’t want you there at this point in time.
Sure, spending the long weekend at home with the same people might be boring, but aren’t they the people you’re thinking of going away with for the weekend? Maybe it’s home itself that is boring. Consider, though, that it’s also safe, because it’s keeping you out of the way of that nasty corona virus and any other germs that might be doing the rounds.
Yes, it’s inconvenient. But it’s no more inconvenient or uncomfortable for you than it is for anyone else.
People selfishly ignoring the rules, going out and potentially spreading germs all over the place is why we have such strict isolation rules now.
And, you know, it’s an investment in everyone’s future.
Some of us have elderly family members that we’re trying to keep alive long enough to be able to see and hug their children and grandkids at Christmas, if this is all over by then.
Some of us have family members whose immunity is compromised by illness, or chemotherapy, or their own unique biology. We’d like to keep them alive, too.
Some of us have chronic illnesses that make us susceptible to every bug that floats past our noses. Given that we already battle significant health issues every day of our lives, we’d prefer to not add Covid-19 to that list.
So when selfish, ignorant people insist on travelling places where they don’t live — whether it’s to deplete our shops of the essentials that are in short supply everywhere (thanks for that by the way, we didn’t need toilet paper this past fortnight) or hang out on the beaches or lake shores or in the parks — and so disrespect the boundaries that the government has established to keep everyone healthy and safe, we get more than a little annoyed.
Because the rest of us are staying home, too. And we would like to be able to eventually see and hug our families and friends. We’d like to be able to go to a cafe or restaurant, or meet with friends at the pub. We’d like to be able to browse a real bookstore with real books in it, or go shopping for things like clothes or shoes without worrying about whose health we might be endangering.
And let’s face it – most people who have lost their jobs because of this pandemic would like them back, sooner rather than later. Essential workers would like to be able to go to work and come home not worrying about what they’re exposed to every day.
The more selfish prats who insist on going to the beach or driving some tourist route instead of just staying home, the longer and harder the lockdown is going to be.
So please, for the love of everything good in this world, stay home.
If home is “boring”, that says a lot more about your imagination than you realise. If you decide something will be boring, guess what? It will be.
Making changes or finding and introducing new opportunities for entertaining yourselves at home is entirely within your control. So if you’re bored, you’ve got nobody to blame but yourself.
Consider this long weekend your opportunity to change your attitude and your environment, not your location.
Please: #StayHome this #EasterWeekend #EasterWeekendlockdownchallenge #StayHomeAustralia #StayingHomeStaySafeTweet
If you suffer with insomnia, or if you have trouble relaxing at night, you might find this post helpful.
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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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.
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.
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
- Three seasons other than summer
- My bed
- Total adoration from Abbey the Labby
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.
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!
Other issues with sleep deprivation can include:
- Impacts short-term and long-term memory
- Concentration becomes impaired along with problem-solving abilities and even creativity
- 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
- Less than 5 hours a night can cause your blood pressure to increase
- It increases your risk for Type 2 Diabetes
- It increases the risk of heart disease
- It can lead to poor balance and increase the likelihood of falls
- Affects immune system and it may take you longer to recover from illness
- Increases the chances of obesity (source: Healthline)
And if that were not enough there is…
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