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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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.
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.
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.Tweet
#English #words #blogpost
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.
Today’s professional development day at school focused on Positive Education and how we can help our students and our communities to flourish.
One of the aspects I found most thought-provoking was the discussion about positive or comfortable emotions and negative or uncomfortable emotions. It was particularly relevant to many of the things I have been experiencing and observing about life in recent weeks, and I want to share my observations and reflections on those things with you here.
Before I go any further, though, I want to make it absolutely clear that I am not a medical or psychological expert or professional. I am, however, a high school teacher of 30 years’ experience, so I have had time and opportunity to make some observations about the things that happen in life and how we deal with them.
More personally, as someone who experiences chronic physical issues and mental health challenges, and who has experienced many conflicting emotions recently due to profound personal loss, I’m confident I know at least a little bit about dealing with adversity, and I’ve learned a few things about the importance of balancing negative emotions with positive ones.
Both positive and negative emotions can be powerfully motivating. Fear of failure or embarrassment is as strong, or stronger, in some people as desire for success is in others.
Negative or uncomfortable emotions can motivate and fuel positive outcomes such as creativity, empathy, and relationship building.
Positive and negative emotions can actually be highly effective ‘companion emotions‘. I don’t expect that this is a scientific term at all, but it seems to me a useful term that describes how contrasting emotions experienced at the same time can provide some healthy balance and perspective.
I can testify from the past few weeks that gratitude can moderate grief, and enjoying a few quiet moments in the beauty of nature can transform abject misery into much gentler sadness.
In different contexts, fear can be a healthy addition to awe or wonder – think of a child at the zoo, for example, for whom interest and desire to engage with the animals should always be balanced with both respect and a little fear or mistrust, so that the child and the animals all remain safe. In yet another situation, a little anxiety or nervousness can actually heighten deliberate preparation and performance if it is paired with intentional and thoughtful preparation, because it can stop one from making rushed or careless errors, or from taking success for granted.
Life is not about always avoiding the feelings that make us uncomfortable or sad. Hoping to do so isn’t realistic at all, given that there are many situations that we can neither actually control or entirely avoid.
Instead, it’s crucial that each of us learns to manage those negative or uncomfortable feelings and use the situations in which we encounter them to develop and consolidate our personal strengths and resilience. Learning to look for the positives in life and choosing to find a balance for the negative experiences or emotions we encounter is how we grow and move forward in life.
“Whether dealing with a major lifeshattering event or a small bump in the road, we can use gratitude to help boost our happiness and change our outlook. While gratitude won’t change our circumstances, experts say gratitude can change how we feel about them.”Paula Felps in ‘Your Brain on Gratitude’ by Paula Felps
That’s certainly what I’m seeking to do while working through my grief. It’s okay to take the time to mourn my losses, but I can’t afford to unpack and live there. Finding a constructive way through my pain will enable me to heal, and come out stronger at the other end.
In being honest about how I feel and what I’m thinking in my posts on this blog, my hope is that my words will help and encourage someone else get through their personal challenges, whatever they are, and to deal with both their circumstances and their feelings.
I have no doubt that knowing we are not the only ones going through grief or pain or whatever trial it is that is burdening us actually helps us to start to heal. That’s why empathy and compassion are so powerful. That’s why the support and love of family and friends is what we yearn for and seek out when things are hard.
Tonight, as I reflected on these ideas and considered the fact that I had no evidence for my inexpert assertions, I did find a number of articles that show my conclusions are consistent with current science and research surrounding emotional and mental health.
Of those articles, some were quite wordy and far too academic to be accessible, but I did find two easily readable and very interesting pieces that discuss the ways in which positive emotions such as gratitude and self-compassion can help individuals deal with adverse situations more constructively. They are:
‘Your Brain on Gratitude’ by Paula Felps via livehappy.com
’The Reason You Make Unhealthy Choices’ by Mandy Oaklander via time.com
“Being kind to yourself, as opposed to tearing yourself down, leads to fewer bad feelings and, in turn, healthier actions.”Dr Fuschia Sirois, quoted in ’The Reason You Make Unhealthy
Choices’ by Mandy Oaklander, via time.com September 25, 2014
Balancing Positive and Negative EmotionsTweet
#emotions #feelings #psychology #thoughts #reflection #personal #blogpost
Forwallowed is a very old, but very relevant, word.
Having successfully incorporated ‘forswunk’ into my vocabulary and introduced it to my friends and family, I am delighted to have discovered another word equally useful as a fibromyalgia sufferer.
‘Forwallowed’ is an archaic word from the 15th century that means ‘weary from tossing and turning all night’.
Not only is it perpetually relevant to my life, it sounds and feels beautiful when spoken.
It is one of those words that evokes the sadness and tiredness of the very feeling it expresses, both physically and mentally, almost like a form of emotional onomatopoeia.
It seems so versatile and germane that I don’t understand why it ever fell out of fashion. Forwallowed is a wonderfully expressive word that deserves to be brought back into regular use.
Forwallowed: an old but highly relevant word that deserves to be brought back.Tweet
#words #englishvocabulary #englishtips #vocabulary #blogpost
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