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…
This post reminds me of the lessons I’ve been doing with my Year 8 History class about Medieval Europe and the Black Death.
My students were very interested in the plague, and surprised by the fact that this was when quarantine, social distancing, and the wearing of masks became the go-to modes of dealing with contagious disease. They were also surprised by the time it took the Europeans to understand the importance of basic hygiene, and how very long it took to develop good medical knowledge.
These lessons were highly relevant in These Times, and helped the kids to understand why we’re being reminded to wear masks, wash and sanitise our hands, and keep away from other people. It was good to be able to discuss how relevant history can be.
We all agreed we are incredibly thankful for modern medicine, science, vaccines and health care.
It does strike me as bizarre, however, that with all the scientific and technological advances we’ve made, we still have to remind people to wash their hands. Some things, it seems, never change.
In this time of Covid 19, when we don’t know why it seems to affect men more than women, and some ethnicities but not others, it is interesting that back in the 14th century the tsunami of the Great Pestilence of 1348 was followed by lesser waves that differed in many ways from the original. The first of these, in the England of 24 Edward III (January 1360 to January 1361) was called the secunda pestilencia and appeared to affect mostly the very young, babies and adolescents. Women were not affected in the same way.
The Chronicle of the Greyfriars of King’s Lynn notes: “…In that year  began a plague among Londoners at about the feast of St Michael, where at first infants…
I get it. We’re at home, our kids are home, we can’t go anywhere, so let’s stay in our pyjamas all day! Right?
When everything else in the world is in limbo and the rules are changing on a weekly — or daily — basis, it’s really important for our health to keep some kind of routine and not let the basics fall by the wayside.
Nutrition matters. It’s tempting to live on pizza, chocolate and peanut butter sandwiches, but being sure we eat well and nourish our bodies properly is crucial to maintaining good health. The healthier we are, the more resistant we are to germs of any kind, and the recovery from any bug we might pick up will be quicker. Not only that, but we’re going to have to go back to work sooner or later, and it would be good if those business suits or uniforms still fit when that time comes.
Hydration is also crucial to keeping the body healthy, but most of us don’t drink as much water as we should. It was only when I started keeping track of how much I was drinking in a day that I realised how far short I had fallen from what my body actually needed on a daily basis. Remember, too, that alcohol is a diuretic, so for every beer or glass of wine, we need to drink more water. For a great discussion on how much water we need to drink, listen to this interview from ABC Australia.
Exercise is similarly important, and for more reasons than just not bulking out while we’re hibernating. Exercise is good for the brain and the emotions as well as the body, so even when we can’t leave home, it’s important to walk, or get on the treadmill, toss a ball with the dog, follow a cardio or dance video tutorial, or get into stretching and yoga. Even cleaning out a cupboard or doing some gardening qualifies. There are lots of options for people to pursue at home, and your exercise can be as gentle or vigorous as you want it to be so there’s no excuse for staying in bed or living on the couch for the foreseeable future.
While it has been widely publicised that sunlight will kill the corona virus doesn’t like the sunlight, that is not actually true. Even so, it dos kill other germs and bacteria. Stepping outside the house and into the fresh air and sunshine is highly beneficial for wellbeing. You don’t have to go far – just into the yard will do if you can’t or don’t want to go any further. While people who live outside the city are at a definite advantage here, most neighbourhoods have parks, gardens or reserves where you can go and walk without being in close proximity to anyone else or even touching anything. Letting light into your house is important, too. it helps you maintain a natural circadian rhythm, and therefore promotes better sleep hygiene.
Personal hygiene may seem mundane, and there are probably people out there who are treating it as optional, but showering every day, wearing deodorant, and taking care with presentation is an important part of taking on each day with a positive attitude. It’s psychologically proactive and It makes a difference to our physical health and wellbeing. Just as importantly, it makes you much more pleasant to be around. You might just be at home with your family, but they are actually the most significant people in your life. If you couldn’t be bothered doing it for yourself, do it for them.
Maintaining a routine is also a very positive psychological strategy. If you normally work from 8.30 til midday then break for lunch, try to do that at home, too. You might have some interruptions, or you might be sharing a workspace, but it’s a powerful way to model to other people, especially kids, that keeping going in times of adversity is both possible and beneficial. It also keeps the brain trained for returning to work when the time comes, and gives you a great sense of satisfaction of achieving something each day.
Similarly, keeping your home spaces clean and tidy promotes health by not giving the germs a foothold. Do the laundry, wash the dishes, and clean the surfaces regularly. That way, things are easily maintained without turning into hard labour.
Relaxation should be part of every day. Whether it’s reading, crafting, meditation, writing, doing a puzzle or listening to music or a podcast, spend some time each day in quietness and peace. If your kids aren’t good at quietness and peace — and many are not — now is a better time than any to model positive mindfulness and teach them some strategies they can use. They should also be learning to respect your need for some downtime, too. They may be getting frustrated, but it’s actually not all about them.
In keeping with all of this, my own personal strategies include are:
Maintaining my regular morning routine: get up at a reasonable hour, shower, dress, have breakfast, and then get into the things I need to do each day.
Creating an achievable “to-do” list for each day. It helps me organise myself, and ticking things off the list is incredibly satisfying.
Sticking to my usual school timetable as much as possible when I’m working from home. I’m a teacher, so there’s always plenty I can do. I have to take care not to let work consume the entirety of each and every day. A routine helps me to manage that more effectively, and keeps me on task this week as I’m working to get done what I need for the beginning of Term 2.
During the scheduled term break of two weeks leading up to Easter, I need to ensure I have the break I have earned. There will be some school work to do — there always is — but I will not be working the whole time.
Spending time outdoors every day. I can choose to work in our courtyard, spend time in the yard with the dog and talking to the sheep over the fence, or spend time in one of the parks in town. Mixing it up from day to day is how I roll.
Eating properly. The temptation to snack all day is huge, and having dropped a few dress sizes since August, that’s not a habit I want to get back into. I’m shopping strategically – I go only when I need to, and when my resolve is strongly in favour of buying apples rather than chocolate.
Punctuating between activities by drinking a glass of water.
Maintain my regular habit of reading for at least an hour a day.
Self Care At Home During the #CoronavirusLockdown #mentalhealth #HealthandWellbeing #selfcare #Priorities #stayinghome
During any crisis, be it war, fire, flood, famine or pestilence, it’s important to stay up to date with important information, but it’s also really easy to be overloaded by non-stop discussion and bombardment by both media and social channels.
In recent weeks, it seems that every time one turns the radio on or watches anything on commercial television, the only thing anyone talks about is corona virus related. It’s relentless. Government officials, scientists, medical authorities, celebrities, talk shows, podcasts, and current affairs specials are all contributing to the conversations, with varying degrees of accuracy and relevance. Every news bulletin tells us how many people have been diagnosed and how many have died.
It would be quite possible to consume media about global developments, self isolation, quarantine, and empty supermarket shelves all day, every day— and there are probably people doing that.
That’s not healthy.
It very quickly becomes emotionally and mentally overwhelming , and can blow out into quite disproportionate fear and paranoia.
We are all as susceptible to that as anyone else, so it is important to strike a balance between keeping abreast of what we need to know and limiting the amount of constant discussion about the virus that we allow into each day.
My strategies and decisions for achieving this include:
Being very selective about where I get my news and information. Each day, I inform myself via reputable and balanced news services. Then I turn my focus to other things.
Choosing to deliberately reject “fear language” and negativity, because that doesn’t help anyone.
Being discerning about the content of social media feeds, and how much time is spent reading them. Keep in mind that social media is very rarely one of those reputable and balanced news services. There’s a lot of misinformation out there. The “mute” functionality is very useful in those circumstances.
Adopting an “only positive” approach to sharing and promoting other people’s content. If it’s encouraging, entertaining and constructive, share away. Spread that stuff around like a five year old sprinkles glitter.
Occupying our thoughts with productive and proactive things. Whether that is work, recreational, or creating positive content for our own social media depends on the needs and demands of each day.
Balancing the amount of screen time in each day with screen-free time. Especially in these times of social distancing, it’s vital to ensure that healthy habits are maintained. Go for a walk, enjoy some sunshine or look at the night sky, prepare and enjoy good food, talk with family and friends, dance to a favourite tune or two, read a book, play with the dog, clean out a cupboard or pull some weeds in the garden… the possibilities are myriad.
Keeping things in perspective. Yes, there is a global health crisis making many people sick and curtailing personal and social freedoms. People are losing jobs and businesses as a result. The economy is wallowing. It is a very serious situation. At the same time, most of us are simply being asked to stay home and find ways to entertain ourselves. It might be inconvenient, and we might have to abandon or change plans, but it is still a much better option than what some people are facing.
Supporting local community. When you do need to buy things, try to invest in local and small businesses so that they can survive the crisis, too. This can help you to develop a sense of connection and belonging that is as encouraging for you as it is for the folk you support. An additional benefit is that many small businesses are currently offering contactless shopping and delivery options at no extra expense, and the quality of the goods and services they offer often far surpasses their bigger competitors.
We can’t control the virus, but we can control our own responses to the disruption and social climate it has created. By being proactive about keeping informed and staying positive, we can avoid being overwhelmed by the volume of discussion and the fear and negativity that can so easily take hold as a result.
Staying informed without getting overwhelmed during the #Coronavirus #pandemic #perspective #mentalwellbeing #blogpost
While I may not have stockpiled pasta, toilet paper, hand sanitiser and baked beans since the novel corona virus Covid-19 has made its presence felt around the world, I have been thinking about ways to stay positive during the pandemic.
As someone who already lives with anxiety and chronic conditions, I know from personal experience that negativity can be as detrimental to one’s health as a virus. I fully agree that we need to be cautious and wise, but I refuse to despair or panic. I don’t think that’s going to help anyone— especially myself.
So, let me take this opportunity to point out some things that it’s important to remember when we’re all trying to avoid either getting sick or contaminating anyone else.
Good hygiene is always good practice, not just during a global health crisis. It has struck me as ironic more than once that The Jetsons told us the 21st century would bring us robotic housekeepers and flying cars, but here we are, still telling people how important it is to wash their hands. Using soap. And to dry them thoroughly. And to not put their fingers in their nose or their mouth. And… yeah.
Self-isolation means keeping one’s distance from other people, not locking oneself in a room and eating canned peas for the duration. You can go out in your car, or ride your bike, or walk your dog, without being in contact with other people. You could walk through a park in the sunshine, breathing fresh air and enjoying different scenery, without breathing anyone else’s air or touching any surfaces with your hands. I can spend time in the yard with my dog.
Communication and contact are really important for our mental and physical wellbeing, so we must not let those things fall by the wayside just because we are avoiding physical contact. We can stay in touch with my family and friends using phone, instant messaging or social media.
Time alone does not have to equal boredom. Ask any introvert: there are myriad ways to entertain oneself, even before involving a screen of any kind in the process. Books are always my go-to, and writing is something I always want more time to do. There are also puzzles, art, music, and exercise people turn to as productive and enjoyable ways to spend time. Even once you pick up a device, it doesn’t just mean TV, movies and games. This might be a great time to take up that old guitar or ukulele, improve your cooking or DIY skills using YouTube videos to show you how. You could start learning a new language – or resume learning one you’ve let slip – using one of the great apps available.
You might be dreading a couple of weeks on your own, but some people spend most — or all — of each day alone all the time, and that’s not their choice, either. Elderly people in particular find themselves alone far more than they wish to be. They are probably more fearful of the virus than most healthier, younger people, and with good reason: they are more susceptible to it, after all. A bit of extra time on your hands is an excellent opportunity to give Grandma or Granddad or Great Aunt Edith a call. Say hello, have a chat, and make sure they’re okay. It’s a little bit of joy and encouragement that might make all the difference in how they cope with the extensive media coverage and the fear that can easily generate in older folk. There’s every chance it might make your day a bit better, too.
There is no more danger posed by the Asian people in your neighbourhood than there is by anyone else, especially if they’ve been living there as long as you have. Sure, the virus may have first come to light in China. That doesn’t make Mrs Wang in Number 14 a carrier, and it doesn’t give anyone the right to swear at her or accuse her of being responsible for the plague. That may seem tongue-in-cheek, but that very thing happened to a friend of mine last week, and she’s not even Chinese. I may be judging my fellow non-Asians harshly, but I figure if that’s happening in regional Australia, it’s probably happening everywhere. This also applies to the Italians, Koreans, and every other cultural group in your community. People are people, regardless of their cultural heritage, and now that Covid-19 is everywhere, being a jerk about someone’s origins is no more justifiable than it ever was. Which it wasn’t. Ever.
Not everyone who has cold or flu-like symptoms is going to have Covid-19. Some will have a regular cold, some will have the flu, and some will just have allergies, which aren’t contagious at all. Here’s a handy chart from the World Health Organisation to help you know who to avoid because they’ll give you a cold, or because they’ll give you the flu, or because they might actually have that nasty new virus.
Today I saw my neurosurgeon for my six week post-surgery check up.
The short story is that he is extremely pleased with how I have healed and the way in which I have managed my recovery.
He showed me the MRI scan that prompted him to have me sent to Melbourne for surgery. Holy Toledo, I had no idea a disc would make such a mess when it ruptured. There is a very good reason they used the word “debris” to describe it.
He said the pain I still have is normal for the healing I still need to do, especially given that I am also dealing with fibromyalgia which can add to the inflammation of absolutely anything in the body at a moment’s notice. I still have to rest and pace myself, but any pain from the surgery should be gone within three months, which is good to know.
There are, however, some things he has advised me not to do, in the interests of maintaining my other lower lumbar discs as they are a little degraded. No gardening/digging, no vacuuming or cleaning the loo, minimal bending to the floor and no heavy lifting. If something causes discomfort, it is to be avoided so that I preserve the other discs.
All in all, the outcomes are very positive because a. I can walk, work, drive, and be independent, and b. I don’t actually like doing any of the things the surgeon told me not to do.
So, this is most likely going to be my last “update” on my adventures with Explodo-Disc. It’s nice to be able to say that it should be all onward and upward from now on. I’m looking forward to that.
One of the things practically everyone has said to me since I came home from surgery is “Don’t overdo it!”
I fully understand their concern. My back is still healing, I can’t sit upright for any length of time without pain, and it would be easy to screw up the progress I’ve made so far.
I, on the other hand, have been determined to see what I can do, given that I’m quite aware of what I can’t do. It’s also fair to say that I’m feeling the deadlines marching upon me like automatons trained to take me hostage until I meet my obligations for the end of the year.
Last week, I managed three days at school before I had to admit that I needed to rest. I stayed home on Friday and spent it recovering from three days in a row of doing more than I had done in weeks.
This week, all our students’ exams and assignments are supposed to be marked and their end-of-year reports written by Friday.
Sure. No problem. That’s totally achievable. *sigh*
I can honestly say I’m trying. Today I’ve graded essays and assignments, and written my evaluations of those tasks for the reports. I’ve had to do that lying in my recliner with my laptop propped up on my knees, because sitting for that long isn’t an option. My eyes are starting to blur, and my brain is mush. I can’t remember how I ever did this stuff on a daily basis without going mental.
But hey! At least I’m writing… something.
Today I talked with my GP about my progress, how I am healing, and what I can reasonably expect. She reminded me I had to be patient, to be kind to myself and not expect too much because my body has had significant trauma and I’m still healing. That’s actually where my body and brain are going to be expending most of my energy for some time yet.
I know she’s right.
My frustration is that it’s really hard to balance being kind to myself in that way with being professional and doing my absolute best for my students and my school. I don’t know how to make both things happen at the same time.
I know tomorrow is another day, but it’s also a day closer to Friday and those deadlines that it brings. And you know, they matter. The whole school has to work on the same timeline so that everything is done well and on time.
I don’t want to be the one to let everyone down, and I can honestly say that if it weren’t for the absolutely beautiful and generous heart of my colleague who has taken on doing all of that for my Year 11 class, I wouldn’t have any hope of getting everything on my “to do” list done.
In fact, everyone at school has been absolutely marvellous and supportive, and while I’m grateful, that actually makes it harder for me to ask for more time or more help. I don’t like asking for special treatment, and I hate the thought of it looking like I’m wimping out. I hate to admit it, but the work ethic in which I have taken pride for so long is actually not doing me any favours right now.
So, tomorrow I will simply head back to work and do what I can in the day without overdoing anything, and trying to be kind to myself.
We’ve all seen those images of the long-distance runners at the Olympics who can barely move their limbs, and have to keep jerking their arms and legs to get over the finish line, where they fall into a sobbing heap, barely able to think or breathe.
That was me this week, although not in any track and field event. With a final burst of grim determination and a fair degree of operating on ‘autopilot’, I staggered over the finish line of an 11 week school term. Exams done and graded, reports written, special reporting for students with disabilities completed, and reporting software glitches dealt with, it was all I could do to get home without actually falling in a heap.
Then I was reminded by my very extroverted husband that we had to go out for dinner to farewell a friend who is returning to The Netherlands. The very last thing I wanted to do was move, let alone have to talk to anyone.
“Do I really have to go?” I asked. I’d like to say there was hope in my voice, but it was more like desperation laced with the abject misery of the tears I was blinking back.
“Yes!” replied favourite ‘social butterfly’. “We won’t stay long.”
I can’t believe I fell for that – again. Why do I always believe him when he says that?
Anyway, I went along and made a valiant attempt to both stay awake and wear a happy face. Despite the fabulous array of food on the table, I managed to eat some potato and a sausage. I was too tired to contemplate chewing anything, so not even the marinated steak managed to tempt me. I had reached the point when I just didn’t care.
It was after 9pm when we got hom. I went to bed and, surprise surprise, found it impossible to fall asleep. Instead, I just lay there in a fuzzy daze of not-quite-asleep limbo for hours, occasionally weeping a little when I had to move one of my limbs. I had my regular talkback radio shows on, and I know I listened, but I don’t think I took anything in. Of course, given that the last time I went to bed and fell straight to sleep may have been when I was about three years old, this is completely normal for me. But oh! how I wanted to sleep.
Today, I feel like I’ve been hit by an even bigger truck than usual. My Fibromyalgia is keeping a constant check on my pulse and my dodgy spine is being a drama queen every time I move.
So far, I’ve managed to avoid taking any codeine, which I wouldn’t have been able to do before my conch piercings. Despite enormous temptation to overdose on coffee, I’ve only had one, and am focusing on just drinking water and resting as much as I can today so that this doesn’t continue for days and eat up half of my term break. I have writing that I want to do, and work for school that I must do, so that’s not an option.
Today is a pyjama day. Tomorrow, I’m going to dress up, put makeup on, and go out to take bookselfies for Indie Pride Day. Trust me, you wouldn’t want me doing that today, even with makeup and proper clothes.
For now, I’m going to snuggle in my comfy chair and cuddle my enormous sense of satisfaction at having not only survived, but also having met every work requirement and deadline, rehearsed and performed in a play, and then auditioned, cast and started rehearsals for HMS Pinafore in September. And all of that without killing anyone – other than fictionally, of course. Go, me!
School has resumed after the six week summer break that we enjoy here in Australia. After completing my First Aid, Asthma/Anaphylaxis First Aid and CPR re-certs last week, followed by three full-on days of professional development and preparation, I had my first day with classes today.
The kids are great and, if the first day is any indication, I’m pretty sure we’re going to have a good year together.
But holy beaverschnitz! I am exhausted. I don’t remember being this tired at the start of a school year before.
Exhaustion by Jessica Cross via Flickr
I’ve come home every evening this week, fallen onto my bed and wept until I fell asleep like a two-year-old who still desperately needs that afternoon nap. I honestly have no idea why they resist that so much!
This afternoon a colleague asked me a question about something that happened last year, and I told him quite honestly that I was having trouble remembering yesterday. I can’t do social media. I can’t read. I can’t write. It’s a good thing I did my preparation for the semester over summer, because there’s no way I could get it done now given the shape I’m in at the moment.
There’s a running joke in my house – okay, so it’s actually not much of a joke, to be honest – that my husband makes me a double shot in the mornings because it’s my kick starter dose of Vitamin DHP – “Don’t Hurt People”. That double shot usually keeps me going most of the day. Today, it got me to about 10.15am and then my grip on reality started to crumble. I focused on my classes, tried to make all the words make sense, and dragged myself to lunchtime, and then downed 600ml of Coke Zero in record time – even for me.
Don’t get me wrong – I don’t want to sound like I’m complaining. I know it’s part of my job and it will pass. I’m just trying to explain why the blog has been quiet, why I’m not active on social media, and why emails are going longer than usual before I respond.
The only thing I can do effectively right now is hope I snap back into the rhythm and routine of teacher life quickly, because the pile of essays and papers in need of grading is going to start mounting up very soon.
Until then, though, if you see me staring into space or collapsed at my desk, administer caffeine… and please, be kind.
What part of “if you’re sick, stay home!” do people not understand?
After shaking my head at the lead story about two kids who have travelled internationally, gone shopping, and heaven knows what else for the past two weeks while they were highly contagious, I wrote this.
Look out, look out, the spots are about
Because some folks won’t immunise their kids,
But when the “did nots” find their kids have the spots
They’ll be sorry and wish that they did.
I’ve heard all the arguments against vaccination, and I simply do not believe them.
As someone with compromised immunity due to a chronic illness, I am certainly glad that my parents made me have that needle that made me squawk for two seconds as a child. After 29 years of teaching, it’s probably the reason I’m still alive.