My plans for today are not optional. That is a luxury rarely available to me.
When I woke up, though, I realised my body has other ideas:
Me: “Come on, legs. You can do it!” My legs: “No. We can’t.” Me: “You have to.” My legs: “Fine. But we’re going to make you suffer.” My back: “I’m with them.” My fingers: “Us too!”
I got up and showered. I needed the hot water for my back, but the water hitting my skin was painful.
I dressed, but then had to change into something made from softer fabric that didn’t hurt my skin so much just by being against it.
I downed my medications, hoping they would work quickly. They didn’t.
I drank my coffee, hoping the caffeine would make a difference. It didn’t.
I can’t take any more pain killers for hours. I can have more caffeine, though, so that is definitely happening.
This is one snapshot of one morning. One morning that is complete typical of many others in my life, and in the lives of other fibromyalgia sufferers.
And now, I am off to a full day of rehearsals that I have to attend because I am the director.
Today is going to be an exercise in perseverance and in drawing upon my actor’s craft. The role I play today needs to be motivated and excited, and able to project that motivation and commitment into my cast and crew.
I cannot fall over. I will not fall over. That is, at least, until I get home.
Tell you what, though. I’m glad my other half is cooking dinner, because I’m already exhausted.
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 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.
Chronic pain is a hard slog. I don’t like to complain about it, but it’s a fact of life for me, courtesy of both Fibromyalgia and a degenerative condition in my spine. Living with pain and the exhaustion it causes isn’t easy. “Faking it” in order to appear as though one is living life normally can be just as exhausting as the pain itself.
It’s easy to take medications and think that you’re doing all you can. It’s very tempting to feel sorry for yourself, which can be very dangerous because it’s a hole that’s hard to get out of.
I’m here to tell you, though, that I’ve found something else that helps.
I read as much as I could and spoke to an acupuncturist about it, who told me there was no reason why it might not work, especially given the success of my daith piercing. It seemed to be a therapy to which my body responded in a really positive way.
On October 18, I returned to the same professional body piercer who had pierced my daith and had another piercing done on an acupressure point in the ear that is treated to ease chronic pain. It’s called a conch piercing. It’s the one nestled in the centre of the “shell” of my ear.
The first night, I slept a lot, which is very unusual for me. In fact, I slept right through the night! I observed the next day that I couldn’t remember the last time that had happened. Since then, I’ve slept consistently better than before the piercing – probably because my brain is less jangled by pain than before.
I’ve been able to significantly reduce my codeine intake by about 90%. Before the conch piercing, there were days when I was taking as much codeine as I had been prescribed, and sometimes it didn’t seem to touch the pain at all.
In the seven weeks since the piercing, I’ve taken less and less of it. I still have pain, but I can manage it most of the time with ibuprofen or paracetamol, only needing to take codeine occasionally. When I do need to take it, I take one pill, not two.
Reducing my codeine intake is something for which my liver and kidneys will thank me forever, and has other… erm… regular health benefits which need no spelling out to anyone who has ever taken codeine frequently.
I’ve also coped a lot better with the hot weather, which always caused my Fibromyalgia to flare and render me almost useless. I still have summer to get through, but I got through some very hot weather last week without falling apart, so I am hopeful that it is a sign of improvement that I will enjoy from now on.
I deal much better with stress than I did previously. I used to experience temperature spikes and pain flares whenever I experienced stress or strong emotions. Those seem to have diminished to instances that last only minutes instead of hours.
So, here’s hoping that it will continue to diminish my pain in the long term.
I want to establish from the outset that I am not a wimp when it comes to spicy food. Indian, Asian, Mexican… I love it all.
For lunch today, my husband ordered a meat lover’s pizza with chilli. It was delicious – until I bit into the hottest fuelled-by-all-the-power-of-hell piece of chilli I have ever experienced.
What I experienced at that point in time was way beyond taste, pleasure, or delicacy. It was excruciating.
My mouth was on fire.
I lost sensation in my lips, then almost passed out.
My eyes were streaming.
I was using bad words, but slurring them terribly.
My dear man thought I was just being funny. I wasn’t. This was one of the rare moments in my life where being a comic genius was not something I had in mind.
That supercharged little sucker burned my mouth, throat, oesophagus and stomach for at least an hour, only moderately assuaged by milk. I have had a persistent stomach ache for 9 hours, and my mouth and throats are still sore.
And now, the assault continues as the nugget of hellfire works its way through my system. N e v e r in my e n t i r e l i f e have I experienced anything like this.
Suffice to say that while the volcano is not erupting hot lava, it is definitely shooting out dangerous levels of sulphur and brimstone. It’s probably worthy of an official health and safety warning.
At least there is one thing of which I can be certain: this, too, shall pass.
And that, my friends, is going to hurt.
Edit: On reading this, a friend sent me an article about two guys in New Zealand making someone eat a Fijian Bongo Chilli, which had exactly these after effects. He was suing them for assault.
I don’t blame him.
An update to my post earlier today: the headache remained mild and went away after a couple of hours and some Advil.
This is, once again, completely uncharacteristic of my decades-long headache pattern.
The only thing that has changed is that daith piercing. I am absolutely certain this is not merely some hinky kind of placebo effect. I was bracing myself for a full-on headache today and it didn’t develop past an oddly annoying, vague kind of thing that was banished by some ibuprofen.
Today I woke up feeling as though I should have had a headache. My shoulders and neck were achy and I felt a bit cloudy in the head. I was surprised about the absence of any headache, and realised then that I would probably have a new set of symptoms to learn since my daith piercing.
My pain levels from my fibromyalgia are high, and at times almost overwhelming today, so I was encouraged that my head hadn’t gone out in sympathy. Since I try to not let my pain dictate what I will or won’t do, I headed for church with the friend we are visiting for the weekend.
What I had not really thought about was my sensitivity to fragrances in a social setting where people don’t know to sit away from me if they are wearing perfume.
We chose a spot where I was not surrounded by people,which is always my preference anyway. An older gentleman came over and sat in front of me. I’m sure he thought he smelt lovely but it was an almost instant effect in causing that familiar sinus pain behind my eyes.
For what it’s worth, my husband commented when we got our of church that the man’s deodorant or cologne, or whatever it was, was unpleasantly strong, even for someone who isn’t as sensitive to those things as I am.
So far, though, the pain has remained much milder than usual, which is a nice surprise. I did have some nausea while sitting there, but that passed once I got out into fresher air, which is also unusual as it usually lasts as long as the headache does.
It will be very interesting to see if this headache hangs on for a day or two, as my fragrance-induced headaches always have done before.
Last week I posted about my new daith piercing and how it had banished the headache I had for the previous four days.
A week later, and I still haven’t had a headache. I can’t remember the last time I went a whole week without a headache… it may have been some time back when I was in high school.
I did have two flashes of pain on Sunday, like the ones I often get before a migraine sets in. Nothing eventuated, though.
I can’t really overstate how significant this is for me. This is little short of a minor miracle.
I still have my chronic pain from fibromyalgia and the pain and compromised movement from a lower spine that thinks it’s 85 years old, but I can manage that.
I have got through hot weather, busy days and work deadlines without tension. These things have always been headache triggers for me. One day I will get brave and eat some cashews, just to see if I pass that test.
People who didn’t know about the piercing have commented on how relaxed I seem. I certainly haven’t felt the tension I generally have before under those same conditions.
So, it’s a very happy “so far, so good!” From me.
If you suffer migraine or cluster/chronic headaches, it’s certainly worth considering a daith piercing. It still seems to be working for me.