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.
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.