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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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
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.
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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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.