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 #StayingHomeStaySafe
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…
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:
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.
I could have spent most of Fibromyalgia Awareness Month writing about my experience of this condition. I could spend a year writing what people don’t know or understand about it.
However, I plan for this to be my only post on that topic during this Fibromyalgia Awareness Month, because I don’t like to complain and I don’t want to sound like I am hiding behind my disease or making excuses.
Fibromyalgia is a diagnosed medical condition— now. It wasn’t always. It has a wide variety of symptoms, although they basically all contribute to chronic pain and overwhelming fatigue.
Because of Fibromyalgia, I have pain all the time. Think about that.
Pain. All. The. Time.
It doesn’t ever completely go away. The best I can hope for is that it will ease off a bit, and that I’ll have more good days than awful ones.
When people present to the Emergency Department or paramedics with pain, the standard procedure is to ask them to rank it between 1 and 10, assuming that 10 is the worst pain they have experienced. I wake up most days to a starting level of about 4 or 5 for me. With medication, I can generally keep it down to about a 3.
That’s why I have structured my working week so that I start a bit later in the mornings. It’s not because I don’t want to get out of bed: it’s because when I do, I am stiff and sore and it’s really hard to get moving. As the day wears on, my pain levels start to increase. My legs feel heavy and hard to lift when I walk. My feet begin to ache, and that often turns into a throbbing pain that starts to work its way up my legs. It can take hours for the aching to subside enough to let me sleep, especially if I have been on my feet a lot. A similar thing happens with my hands and arms if I am using them a lot, and especially if it involves holding or carrying anything with a bit of weight in it. It’s not unusual to end each day feeling like I’ve been either beaten up or body slammed by someone or something a lot larger than me.
Anytime I get stressed or anxious, or when my depression is messing with me, my pain levels flare. Overtiredness also increases my pain. Sometimes, I reach that level of tiredness by lunchtime and still have two classes to teach and a 40 minute drive home before I can rest. Add in a work deadline or two and things can get pretty horrid.
All of this is completely separate from my back pain, which is a different thing and a different type of pain altogether, and which I am able to manage fairly effective for the most part.
The problem with pain is that people can’t see it like they can if you have cuts and bruises or a cast. You can hide a lot behind makeup and a smile.
When they call this an invisible illness, they’re not kidding. If I had a dollar for every time someone said to me “But you don’t look sick,” I could quit work and live very nicely on the interest. It’s such a shame I can’t bill people for their insensitivity or ignorance.
I know it’s not a death sentence like some other diseases are. It is, however, a life sentence. As things stand, there’s no cure in sight. All I can do is keep up my painkillers and anti-inflammatories and hope for the best.
None of this makes me, or anyone else with Fibromyalgia, weak.
It takes strength and courage to get through each day, and sometimes that’s on a moment-by-moment basis. It takes resolve to blink away the tears and keep showing up for work or social or family occasions. It takes guts to say, “Actually, I’m not doing so well” when people ask, or to write a post like this one. In a world that prioritises health and beauty, brokenness is often an unpopular confession.
I have Fibromyalgia. I don’t want sympathy or pity. I don’t want people to tell me I am strong or brave. You bet I am!
What I really want is more awareness, better understanding, and more effective pain relief. And a cape. They can’t see my pain or my superpowers, but they’d be sure to know I have something if I were wearing a cape.