‘Fibromyalgia’ — a beginners guide

Part 1 : Breathe.

Ahh. You hurt.
Like, a lot. You fear you will never find the words for how you are feeling. And when you do, people don’t really ‘get it’, that you aren’t being heard, that you should just stop talking about it because you are clearly making them uncomfortable.
You cry. A lot.
Like, ‘a lot’, a lot. So many tears and snot and weird noises that you didn’t know you were capable of. And it just seems to keep going — when are you ever going to get a break from this shit? Why the frig is this happening? What is wrong with your body? What is wrong with you?

When fibromyalgia first came into my life, I thought I was evaporating. If I could try and describe what it felt like, it would be something like:
“Imagine that your skin has been doused in kerosene, set on fire and then your flesh slowly stripped from your chalky bones. Everything aches. You are too full, you have no space to be in. You can’t breathe properly — don’t want to breathe properly. The world is too loud and you can suddenly feel things — sound presses into you skin, light pierces your eyes and mind, and emotions are like waves of chaos pushing through your body.”
But I never described it like that, because really no one ever asked.
The doctors I went to said things like, “Rate your pain from a scale of 1–10, ten being the worst.”
So I would give them a ‘7’, because right now in that little fluorescent room it wasn’t as bad as the night before when I really let myself fold into it, and I didn’t want to seem like a drama queen. After all, I wasn’t dying, because I’ve been there a few times in my life and this pain did not compare to that feeling of fading into a comatose state (more on that to come).
They would ask me if it was a sharp or aching pain, deep or shallow, always there or fading in and out. And I would answer as best as I could, but my answer never seemed to do these feelings justice.
What I really wanted to hear, was this:
“Tell me about your pain.”
Five words that I never heard. Five words that I longed to be given, because doing so would allow me to speak. But equally, I didn’t really want hear them, because I was scared of what would come out.
It has taken me almost 3 years of sitting with my pain to understand this very important thing:
— Your physical pain is the manifestation of unprocessed and unexpressed emotions —
Now read that again.
One more time.

I have had a very ‘traumatic’ life — that is, one filled with deeply distressing and disturbing experiences. From before I was born, I have been exposed to dis-ease in the body. My mother had gastro when she was about 7 months pregnant with me and I was induced at birth. From the age of 6 months old I have had chest infections, ear infections, urinary tract infections (one particularly severe where I had to have a MCU ultrasound — more on that later), and at age 5 a final diagnosis with Type 1 Diabetes.
I never thought much about my early life, not until I was 22 and in excruciating pain. I tried my absolute hardest to pull away from it, to medicate it, to get out of my body as much as I could. I didn’t want to be here, on this planet, living this life, because it hurt and there was no relief no matter what I tried. Painkillers worked for a while, until they didn’t and I had to increase my dose. I was in such an altered state that I was losing touch with what was real around me and was bordering on hallucinations. I was also put onto anti-depressants to try and numb/stabilise my nervous system, and in turn my increasing depression. All of this medication was upsetting my stomach and gut, so I was then given stomach acid regulators to try and counteract the medication. All of this, as well as trying to balance my blood sugar levels and maintain some kind of food intake was eventually too much.
I cracked it, and stopped taking all of my medication (bar insulin) against medical advice.
It was the first major decision that I had made about my health in a very long time, and it was utterly terrifying. I was going against a whole life time of Western Medical authority, and I was equally proud and convinced that my body would give out and I just wouldn’t wake up one day. But deeper than that, was this little voice telling me that there must be a purpose. I just could not accept that my body was feeling without reason.
So one day, as I was curled up in the middle of a whole-body ache, my left foot began to shatter. It started in my ankle, like a screw driver working its way in to the joint, and then trickled down like iron rods through the nerves in my feet, eventually reaching my prickly toes. It was agony, and my instant response was to coil away from it and wish it would disappear.
Instead, I did the opposite.
I took a deep breath and imagined with all my might that this breath was going straight down to my foot. Immediately my body tried to draw away, my attention tried to move back out of my body. But I held my ground, kept my mind focused at my foot and followed the exhale, deepening my breath right into my toes. I sat there for a moment, simply being with this feeling of pain, before I inhaled again.
Again, it hurt. And again I was met with the impulse to recoil, to hide from what I was feeling. But I made myself stay there, as if I were a ball of light sitting directly on top of my ankle.
And this time when I exhaled, I was met with the most profound feeling of relief, and I cried with happiness for the first time in a long while.
It was simple. My body was waiting to breathe with me. Waiting to work with me, to create space, room to move, room to breathe and room to be.

I won’t tell you that it has been all sunshine and rainbows from there, because it has not. It has been hard work looking into the depth of my emotional well and bringing my suppressed feelings to light.
It’s like leaving an apple to sit at the back corner of your desk drawer for months on end — you know it’s there, because you can smell it, and you know it’s going to be rotting and ugly and fermented and growing all sorts of weird shit. But you leave it there anyway, hoping that it won’t keep breeding, but it soon goes from soggy and mouldy, to attracting flies and maggots and all sorts of gross critters. Pretty soon, it takes on a life of its own. Soon the drawer is filled with the movement and itch of damp and dirty creepy-crawlies, and if you continue to ignore that feeling, then your whole desk starts creak and ache, until it presses the ‘Too Hard’ button and starts screaming at you.
You might initially try to cover the desk with a new coat of paint or throw a bunch of painkillers at it, but really, you know that you need to open that stinky drawer and look straight into the core of that apple.

It can be confronting to step back into your body, especially if it has been years since you truly allowed yourself to feel. The first time you try to do it, you might sit there noticing for the total amount of 2 seconds.
“Fuck this — nuh-uh. I’m out.”
And that is perfect. Your body knows what it needs; there is no time line or urgency to undoing emotional tension.
But it is important.
Take those 2 seconds of attention, and carry that with you.
How amazing, you have begun. You have taken time to invest giving your breath back to your Self.
Now don’t push it. Don’t force it, don’t tie in expectations by structuring an agenda or schedule. Breathing is amazing — it happens with no conscious effort, yet it is always there for you to come back to notice.
Maybe you are in a meeting, and you are feeling tense and stressed. Maybe you are in traffic and the lights are red and you are feeling Really Pissed Off.
Awesome, you have noticed it. Now you can take a breath with your body and give your energy back to you.
How amazing is that?
Breathing is pretty magical.
Now the boss might be talking again, or the traffic is starting to move forward, and that’s ok. Life keeps moving, and you keep living and breathing just because.
So, off you go, and take that moment with you.
Your breath is happening, waiting for the next time you choose to breathe for your Self.

I will leave you with these words, as John Bradshaw so simply puts it:

“E-motions are energy in motion. If they are not expressed, the energy is repressed. As energy it has to go somewhere. Emotional energy moves us as does all energy. . . To deny emotions is to deny the ground and vital energy of our life.”

So, go slowly and be gentle. With your Self, with your body, with the people around you who don’t know what you need (because how can they if you don’t?)

Cate