I haven’t had any alcohol at all in weeks. I didn’t eat the bread or the fries that came with last night’s burger. I’m hydrated.
This is just my fibromyalgia being a complete jerk.
By the time I get to work, I will have drawn on every acting skill I have— and that’s quite a few— to present as ‘normal’. I will do my job with absolute professionalism: my students will never know how dreadful My body feels.
After work, I will complete the errands on my to-do list. Those things don’t go away because I feel rotten.
Only when I come home again can I give in to the pain, the sluggishness, and the desire to just go to bed and moan a bit.
But they’re right. I don’t “look sick”. That’s because I am 100% accomplished at making it look like I’m not.
Because the weekend was difficult, I stayed home from work on Monday, which was the third day after the procedure. I returned to school on Tuesday, and after spending most of the day on my feet, I was absolutely exhausted by the end of it. An early dinner and spending the evening lying down was a good strategy, as it gave relief to both my lower back and everything else that was hurting.
The injection site was progressively less tender as the week wore on, so was able to lie down and sleep on my back. As the steroids started to do their thing, I began to experience a lot less sciatic pain. I continued to have the consistent pain related to my fibromyalgia, but at least my butt and legs were no longer on fire.
That I began to see improvement on Monday and Tuesday was right on schedule for the time frame the doctor gave me – the injections would start working in 2-3 days and build up effect over the next couple of weeks. So far so good. Now, we wait to see how long that lasts.
The ESI hasn’t made any difference to my lower back pain – that’s not what the treatment was meant to do – but having the sciatic pain diminished makes a huge difference. I know how to manage my lower back and fibromyalgia pain. I can lie down comfortably for rest and sleep – and what a blessing that is!
The one-week verdict is positive. Despite the initial pain and discomfort, the procedure appears to have done what it was intended to do. If the sciatic pain returns, I’ll definitely have the treatment again.
Epidural Spinal Injection: One Week Later #spinalhealth #BackPain
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.
The classroom is busy in a studious kind of way. Students are working on the task I have assigned them, and I am making my way around the room, checking in with each student to see if they need any help or clarification. The tone of the room is positive and the level of noise is low.
I know these kids well enough to know some of their hobbies and interests, which ones love reading, which ones are sporty, and which ones are the introverts who would rather work alone than in a group situation. Suffice to say, I know their names.
As I move toward the first girl in the next row, I quietly whisper to myself, “Don’t call her Susie. Don’t call her Susie. It’s Sharon, not Susie.” In the very next nanosecond, I open my mouth and say, “Hi Susie! How are you going with this assignment?”
Everyone in the room has heard me do it – again. A collective sigh, non-verbal but heavily laced with the essence of “Not again!” can be heard. One kid shakes his head at me in an awkward blend of amusement and newly-refreshed disappointment. It’s fair to say that this has probably happened to him before.
Sharon looks at me with an expression that shows she is torn between saying “I’m Sharon!” and rolling her eyes, pretending I didn’t say it, and answering my question.
“I’m so sorry!” I say. “I know you’re Sharon. I don’t know why that happens. It’s certainly not deliberate. It’s just… my brain. It hates me.”
Sharon nods. Unfortunately, she’s heard this enough times to know it’s true. I give her a pathetic, apologetic smile in response, and go back to talking about the assignment.
How can I remember the details of the Industrial Revolution or talk ad nauseum about the literary qualities of Shakespeare’s ‘Much Ado About Nothing’, and still get some poor kid’s name wrong at least once a day?
It isn’t even always the same student. Occasionally, my brain/mouth coordination goes rogue, and I’ll call Kate ‘Lily’ or ‘Rose’, just to keep things interesting. Just once. Just to make things interesting, I’m sure.
This is one of the things that keeps me humble as a teacher. In my job, I’m required to talk to people and use their names in the classroom. And that very basic thing is something that, from time to time but far too often for comfort, I struggle to do.
The ironic thing is that I’m actually really good at remembering faces and names, where I met someone and conversations I’ve had with them. I have to remind myself that not everyone does that when I’m tempted to take it personally that someone hasn’t remembered my name, or having met me before.
I just don’t understand how the wrong name can come out of my mouth so often in every day situations.
The only thing I can put it down to is the brain fog I have carried since I contracted a delightful tropical disease called Ross River Fever in 2011, and which is also typical of fibromyalgia, which I have been left with as the legacy of the RRF. I know the fog is particularly meddlesome when I’m tired or my pain levels are high, but even at times when I am doing okay and enjoying otherwise greater clarity, some autonomous impulse to self-destruct in front of others fires off and I find myself apologising for calling Tom either ‘Dick’ or ‘Harry’.
I think I’m going to have to just start telling my classes at the beginning of each year or semester that it’s likely to happen, it’s not intentional, and I apologise in advance. It’s either that, or resort to calling everyone “Hey You” or just never using their names, neither of which is a terribly professional option, either.
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!