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.
There are many things I have learned to do again, albeit differently, since my spinal surgery 15 months ago.
It seems, however, that stairs are still my nemesis. I can manage one or two steps if I go slowly and carefully but, as I discovered tonight, walking up a whole flight of stairs still causes me significant pain.
We went out for dinner with friends, who had booked at a first floor restaurant that had no elevator. It did, however, have a beautiful circular staircase. Beautiful… and an enormous challenge.
I went very slowly, but by the fifth or sixth stair my lower back was screaming. Before I got to the top, I could feel the sciatic pain in my butt and staring to extend down my legs. I couldn’t stay there, so I had to either keep going or go back down. Slower still, and even more carefully, I made it to the top.
The first thing I did was hit my friends up for whatever analgesics they had. One had ibuprofen, the other had paracetamol. I took both, as my doctors have instructed me to do when I need to. I also chose not to sit until my meal was delivered, even though standing up in a large room of diners made me feel very self-conscious.
It didn’t help that some people were quite obvious about the way they looked at me – and all I was doing was standing up. Once again, it reminded me of how much harder it must be for those whose differences or disabilities are more obviously noticeable.
Dinner was delicious, but as soon as I had finished, I stood up again. We took the rear door out of the pub, as it opened onto the driveway. Even through it was quite a slope, it was still easier than the stairs.
It’s disappointing that the establishment had not been more thoughtful about accessibility. An assumption that everyone who visits is able-bodied enough to use the stairs is ignorant at best. Perhaps if there were a “disabled access” sign pointing to the rear of the building, I might have been able to enjoy my meal and the great company without either kind of discomfort. I cannot imagine I am the only person who would benefit from that,
And, if you’re ever out for dinner and there’s someone standing up for most of the evening, or doing anything else out of the ordinary, just know they have their reasons and be kind enough to pretend you haven’t noticed.
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.
‘Les Miserables’ is among my favourite books of all time, and it is also one of my favourite musicals.
I saw a fabulous production of ‘Les Mis’ last night at the theatre in Warrnambool.
My major achievement for the evening was not singing along out loud— which took more self-discipline than you might ever realise.
I was moved to tears by the emotion and beauty of the performances, but also— as always— by the power of the lyrics.
There are many moments and several songs in the show that I love, but my absolute favourite lines are sung by Fantine:
“But the tigers come at night With their voices soft as thunder…”
‘I Dreamed a Dream’
Those words are so profound.I find them powerful because I know that whatever it is that a person struggles with – pain, grief, depression, anxiety, worry… those tigers visit more often at night, and stay for longer, than they ever do during daylight hours.
One of the reasons I began taking my writing more seriously a number of years ago was because I found it an excellent way of dealing with my night tigers and answering their voices with my own.
That’s why many of my poems deal with themes of mental health, pain, depression, grief, and resilience. Its also why I insist that writing is the most effective therapy I have ever had. It hasn’t cured me or solved my problems, but it has certainly helped to heal me and enable me to deal with the challenges I face in life in a much healthier way.
Those tigers still come at night, but they have discovered that I, too, can roar.
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.
Now that I am making more progress in my recovery from my spinal surgery and I am moving a little more freely, I’ve decided to be more deliberate and purposeful about starting to retrain my muscles and building up some stamina for both my body and my mind.
Today I got out some pencils and a book, and started colouring, which is always something that makes me happy and peaceful. It’s also something I can do standing at the kitchen bench. I don’t have to do it all at once – it’s something I can do, and leave, and go back to through the day.
It may not seem like much, but getting this much done is a big achievement for me. I have been largely horizontal and only walking fairly short distances -although frequently – since the surgery on my spine on October 19.
Since my last update on my recovery, the first lot of bruising has faded to a dull shadow and the deeper bruising has begun to come to the surface now, so I am still all the colours of the rainbow, but the pain is less intense and more manageable now. I’ve ventured out of the house and walked around the yard, and begun to do light things around the house like folding laundry and doing dishes. Things that exhausted me at first are easier now, which is really encouraging. I have, however, learned the hard way that I am not ready for cutting pumpkin (it was just a little bit of butternut) or bending to get things out of low places. You don’t know until you try, right? Suffice to say that dinner on Monday was delicious, but I paid for it on Monday night and yesterday. The aggravation has settled now, though, much to my relief.
Sitting for any length of time is still an issue: I’m currently managing about ten minutes at a time before I have had enough. That means I will have to be ready to stand up most of the day when I go back to work in a couple of weeks. I will have exams to mark and papers to grade, so this seems like a good way to begin to prepare for that sort of thing. I can gradually build up to standing for longer periods of time without feeling any pressure to “perform”.
I also plan to start walking a bit further than I have been, especially now that I am a bit more confident and steady on my feet.
I fully understand that healing and recovery can’t be rushed, but I think that small progress in these ways will only help me to get stronger. And when I have had enough each time, my bed or my recliner will still be here waiting for me.
Today I am feeling positive and encouraged, which is also helpful to my healing and easier to live with all round.
I had to go out today. There was sunshine. There were people. It was traumatic.
My driver’s license expires on Thursday, so my husband agreed to take me to the next town where I could get the photo taken, sign the form, and give a chunk of my cash to the government for a new one.
I did my hair, put on real clothes instead of pyjamas, and put on some makeup.
I thought I was doing okay for someone recovering from surgery, so I sent a snap to my best friend.
Naturally, she was both encouraging and completely understanding of why I made the extra effort. She is consistently awesome like that.
Let’s face it, you don’t want to be thinking “Oh yeah, that was that month where I spent two weeks nearly dying from a mystery chest infection and then ended up having spinal surgery after screaming non-stop for four days!” every time you look at your license photo for the next ten years, do you?
The drive to Camperdown wasn’t too bad. I had the seat reclined a fair way because I still can’t sit comfortably for more than about eight minutes, and my husband was pretty good at missing the worst of the bumps.
I walked from the car to the shire offices without too much trouble. I didn’t have to wait long, thankfully, and everything went smoothly so that the license renewal was taken care of in just a few minutes.
Then my husband suggested we call at the supermarket to pick up something for dinner. My approach to grocery shopping is quite pragmatic: get in, get what you need, and get out. I thought I could handle that, even at this stage of my recovery.
Of course, it’s never that simple when you really need it to be. I wasn’t two meters through the door of the store when an acquaintance stopped me for a chat. I had the cart to hold onto – what a clever disguise for an disability support walker that was! – and it was a very good thing, because just standing there, I could feel myself fading and the sweat breaking out on my skin as I tried to pretend there was nothing wrong. In the end, I told her I had to go and staggered off to find my husband, who had been gathering the things we needed and had his arms full of stuff. We went to find the last couple of things, and that was when he pointed out the Harry Potter Quidditch Match LEGO set.
That may not seem significant to you, but Harry Potter and LEGO are both big-ticket items in my world. I didn’t have to rationalise anything. It was coming home with me. I left the set with Aragog behind, though, because while Hagrid may love giant spiders, I do not.
We got through the checkout and back to the car, and my lower back where I had the surgery last week was really starting to hurt.
The road seemed longer and much bumpier on the way home than it had on the way there. I was really thankful that I wasn’t sitting upright, and tried not to complain but couldn’t help making those awkward little little grunty noise that you make when something hurts and you try to just grit your teeth but the sound gets out anyway.
When we got home I had to take some ibuprofen and lie down. I didn’t even take a moment first to look at my new LEGO set. And once again, I am writing a blog post on my iPad while lying flat on my back.
The good thing is that my driver’s license is good for another ten years.
The not-so-good thing is that I know I am nowhere near ready to use it.
Pain is a lonely place to live in.
It’s an insular, remote little world all your own.
It’s isolating because it makes you feel like nobody really understands except someone who experiences the same kind of pain you do… and even then, you don’t want to burden them with your pain because theirs is enough to bear.
It’s not about martyrdom.
It’s about realising how fragile even the strongest, funniest, most courageous person can be.
I usually don’t write about my pain because that enables it to take power over my thoughts to a greater extent than I am comfortable with.
Besides, I don’t want to be the whiny person that nobody likes.
Even when I am alone, there’s something within me that wants to say that I am okay, that I will get through it, that I can handle it.
Yet I know that isn’t always true.
Sometimes I am just broken and, quite honestly, I don’t know how to not be broken anymore.
I so wish things were different.
I wish I could move the way I used to.
I wish I could fall asleep as easily as my husband does.
I wish I could wake up refreshed each morning.
I wish my spine was not so fragile. I would love to go boxing and punch my frustrations out on a leather bag, or run until I was exhausted in a good way, or smash a ball around the squash court.
I wish I could hold a baby for longer than a few minutes without aching.
I wish I didn’t feel so sorry for myself.
I wish I could sleep.
It was a really rough week at school for a number of reasons. I had been feeling very low and quite emotional for a couple of days after receiving some quite negative feedback from some of my students who preferred I didn’t know who they were, via my boss.
I was struggling to get past that until some lovely things happened to remind me that my professional life is not defined by negative comments from one group of students.
Thursday morning was complicated by things way beyond my control. I was supervising an exam and nobody came to take my place, so I couldn’t leave to take my Year 12 class. Given that the day before I found it really hard to go in there, I was thankful for the reprieve despite the obvious inconvenience that went hand-in-hand with it. I was worried that the Year 12 students would think I just didn’t bother; in that sense, my missing their class couldn’t have happened at a worse time. While still in the exam room, I sent them a note to apologise and explain what had happened. The good thing was that it gave me time and distance to decide how I was going to deal with the issues I was facing in there. I wanted to talk with them about it, but not while I was still upset enough to cry or sound whiny. I didn’t want it to be a knee-jerk or emotional reaction.
Later in the morning I ran some auditions for the school musical. This year we’re doing “The Pirates of Penzance”. Two of the senior students who have both had leading roles in previous years auditioned together – she played Frederick and he played Ruth. It was absolutely delightful. That was the first time I had smiled, let alone laughed, in almost three days. They had no idea of how I was feeling, nor did they realise just what amazing therapy they were for me.
That afternoon I had my drama class. The students were performing plays that they had written themselves.
Those kids were amazing. They wrote clever scripts and performed them beautifully. There were some fabulous moments of humour, some well-developed drama, and very clever characterisation. I saw one young lady who started with little confidence perform with confidence and style. I saw three young actors with a lot more experience perform a highly comedic play with at least eight roles, achieved cleverly with the change of a hat, glasses, jacket or prop to denote a different character.
After their performances, we had a little time so we talked about the plays and what they thought of their performances. I was so encouraged to hear them praising each other and saying really positive and constructive things without any encouragement to do so from me. We shared some fun moments and we laughed together. It was one of those moments where we all bonded as a group and everyone left feeling great.
On that same afternoon, we had our ‘Professional Learning Community’ staff meeting. This is where we divide into groups and discuss things like assessment, teaching and learning strategies, motivation, and all that type of stuff. I was so tempted to just go home and avoid the whole thing, but I went along like the good girl I am.
The “icebreaker” was to tell everyone the high point and the low point of our teaching in the past few weeks.
I shared about my drama class and their great performances, but also about the positive bonding time afterward. I shared my frustration about not having been relieved from exam supervision that morning as the “low point” because I was still hurting over the year 12s and didn’t want to tell anyone about it.
In the course of the discussion, I was reminded that everyone has low points, nobody gets things right all the time, and that those issues don’t mean we’re not good at what we do. They just mean we’re human. Another colleague remarked that half the time when we think things are failing miserably, the kids don’t even realise. I responded with the observation that it’s like a play on stage – we know the script, but the kids don’t, so half the time when we think we’ve failed miserably, they are none the wiser.
As I drove home, I thought about my year 12s. As I wrote the other day, I didn’t know if it was one, two or seventeen of them that had complained. What if it really was only one or two? I thought about each of the students and decided that it definitely wouldn’t have been some of them. I decided to talk with them the next morning at the end of my class – rationally, reasonably, and humbly.
On Friday morning, ten minutes before the recess bell, I asked them to stop working and listen as I had something I wanted all of them to hear.
When I told them that I had been informed that there were students in there who thought I didn’t like them and weren’t being treated fairly, a number of the students looked indignant and quite angry. They were as horrified as I had been. That was reassuring.
I told them that I’m aware I don’t always get things right. I told them that if I had caused offence or hurt anyone that I was genuinely sorry and had been unaware of it until this week. I said that I didn’t want any barriers between them and me. I want to do everything I can to help them finish school well.
I told them that if I seemed reserved or miserable, it was far more likely that I was in physical pain than that I didn’t want to be with them. I told them that I don’t like to let on when I’m in pain because that’s my problem, not theirs.
I asked them to please come and talk with me, or write me a note, or send me an email, if they wanted to talk about anything one-to-one or if there was any aspect of their work they wanted help with.
I reassured them that I really do like them. I think they’re great – and that’s the truth. I love being in class with them.
I left the room at the end of the lesson feeling like a weight had been lifted off me. I had met the conflict head on and dealt with it as honestly and sincerely as I could.
The only kids who came to see me after class were ones who wanted to tell me that they knew I loved them and they had no idea where any of that came from. They told me it certainly wasn’t the majority view, and it hadn’t been discussed in the common room. Nobody has sent me any anonymous hate mail, nor has anyone asked me to work on something specific with them.
I really hope that I modelled some good behaviour in terms of resolving conflict and apologising. I really hope that the reassurance I gave was all that was needed to set their minds at ease. I trust that things will improve from here on.
All I can do now is wait and see.
I really love some of the people I work with. I need both hands to count the awesome people that I consider to be my friends as well as my workmates. I don’t need to name them. They know who they are.
There is a lot to be said for knowing that there is always someone who you can always turn to for advice, a shoulder, or a laugh.
It’s refreshing to know that when someone smiles at you, they mean it.
When they ask if you are doing OK, you can be honest because they actually want to know.
I can tell them when I’m struggling, and I can share my joys and victories with them.
They see humour in the things that make me laugh, and they will cry with me, or for me, on those days when that is really my only option.
They know, too, that I will do the same for them. It’s really great to know that I can make the difference in their day that they make in mine.
Some of the greatest joys in my working life come from knowing who those people are and sharing part of my life with them. I am thankful for each one of them every day. To be honest, those people are often the difference between me actually being happy to go to work or not.
Don’t get me wrong: I love my job. I love working with my students and seeing them grow in confidence and knowledge. I thrive on classroom interaction and banter. I have positive student-teacher relationships with most, although not all, of my students. They know I do my absolute best for them.
When I am teaching, I know I’m doing what I’m meant to be doing.
There are times, though, when being at work and functioning properly is a really tough challenge. Some days are just plain, hard work both emotionally and physically.
I hate it that I’m so weak and vulnerable. I hate it that my body lets me down. I hate it when my students see a glimpse of my pain or my inability to cope with it.
I hate the guilt that goes with all of that.
One of my greatest fears is that someone will decide I’m not up to it anymore, or I’m not good enough, or that I’m too broken to keep on teaching.
So I suck it up, put my sassy pants on, and keep going. I choose to invest my time and energy into my students and my friends. The days are much more rewarding and enjoyable that way.
A long walk up to the staff room doesn’t happen any more often than absolutely necessary, and that’s OK.
I’m not isolated because I am blessed to share an office with some of my friends. Others make a point of catching up with me through the day or by email or instant message.
It’s hard to feel sorry for yourself with friends like mine.
I really do love some of the people I work with.
Others… not so much.