Saturday, May 11, 2013

A Pain in the Ass - International Fibromyalgia Awareness Day

Today is Mother's Day in Australia, as well as Fibroymyalgia Awareness Day all over the world.

I thought I'd write a post about it because it's one of the categories I find myself in. I'd like more people to have an understanding of fibro. I wouldn't say it's a primary focus, but it tries to be. It edges in to every area of living in one way or another. This isn't always a bad thing but it ain't a walk in the park either.

If you'd like a snapshot definition, there's a pretty good one here.

There isn't a lot of press about fibro, but here are some of the things that spring to mind:

- spoon theory
- purple logos involving flowers and fonts that I must say I don't find aesthetically pleasing
- yuppie flu
- mind/body grey area
- affinity and connection with other conditions and illnesses like chronic fatigue syndrome, lupus, crohn's disease, glandular fever, etc.
- pop culture references: House MD (a person came in complaining of fibro, House gives him tic tacs and tells him it's medicine and he comes back a week later "cured"), The Gilmore Girls (The senior Gilmore's talk about attending a fundraiser for Fibromyalgia and decide that it's "a very dull disease")

The other day I went on a first friend date with a gorgeous lady I met at the Big Hearted Business conference. Lily Mae Martin is a fine artist, writer and mum. We went out with her toddler, and aside from completely adoring each other, wee little lady and I seemed to have a fair bit in common. As we drove to our destination (Heide Gallery for a spot of lunch and artsy appreciation) she wanted to know if we were far away, what would be happening, she was very excited and happy. As we sat down to have lunch (banana milkshake and crepes for toddler, beautiful seasonal salad for Lily and wagyu pie for me) our tiny friend became tired. Her whole face changed in an instant. Oh, I know that feeling! All of a sudden, your whole energy levels just drop. Bang.

Being a 32 year old woman, it isn't really appropriate for me to crack it and cry, but gee whiz that's what I feel like doing sometimes. It's like every ounce of air leaves the energy balloon and you revert to that primal way of getting by before you really learn about the needs of others. Flailing madly, and hoping to make it through.

I absolutely loved spending that time with Lily and her beautiful child, it felt the way it always feels to witness honesty and realness. Toddler gets tired, gets a bit grumpy, mama distracts and loves and supports and negotiates, toddler feels better and relaxes a bit. Toddler reverts to sweetie pie. SO CUTE. (I'm not sure if I'm being clear enough about the levels of cluckiness I'm experiencing at the moment, care for a tonne of bricks?)

The whole day was cute, and I don't believe that the tired behaviour was bad in any way - that wonderful girl was communicating her needs in the best way she knows, and her mama was teaching her all about love every moment of that day by loving her solidly and consistently through the ups and downs, the divine and the difficult.

So how do we love ourselves consistently as adults, when in our core we have the rapidly changing constitution of a tired toddler?

It's not easy, but it is possible.

There's a memory that often pops into my head from nine years ago. I'm 23 and the fittest I've ever been in my life. A psychic had told me I was going to meet someone soon (for holding hands etc), so I wanted to look hot and started walking in the mornings. Lifelong chub melted off me and I was fit and energised, fulfilled in my study and work, and I was at a gig at the Corner Hotel in Richmond with friends. I think it was Spiderbait, or the Lucksmiths, or someone bouncy. I remember that I'd been standing for hours after a full day and I didn't feel tired. I was so happy, and had the awareness to pause in the moment and feel grateful.

It wasn't long after that, that I met the person for holding hands etc. (it turned out to be a woman), worked myself into the ground, the relationship didn't work out in all the worst ways, I had a massive blow-up with my entire friendship group and ended up moving on because I knew I deserved more, I moved into a random Fitzroy sharehouse and after a few weeks the guy in the next room shockingly had a heroin overdose, I had an extremely bad flu, I moved out of the sharehouse and in with my brother, he fell off a roof whilst working and was badly injured (he was very lucky to survive), I injured my shoulder through overuse and got put on anti-inflammatories, I got a haitus hernia and was in agony during the final months of my course, I took on more work anyway, I got injured in a workplace incident and that's when it all stopped.

Quite a list isn't it!  Drama drama drama. Physical, mental, social, work and family drama. I stayed upbeat and positive, somehow. I'm starting to understand now that things may have been different if I could let myself be shitty and angry about all these things that happened. The anger is in my bones now because I wouldn't let myself really feel it.

My body could not cope with all these things, and put a stop to me getting into anything else that would wear me out or upset me. I couldn't get up out of bed. I couldn't move. My arms did not work. It hurt to brush my hair, so I didn't. I went through workcover which was a total head-fuck nightmare and to this day I don't remember much of the next eighteen months or so. I stayed in a bad relationship because I was terrified to do it all on my own.

I finally got a diagnosis when I went to see a sports physio recommended to me by a friend who was good at helping out with weird shit that wouldn't go away. He did a tender point test and told me it was Fibromyalgia after I retched and doubled over with pain, breathless and clammy. I saw a rheumatologist who told me it was Fibromyalgia. He was so kind and gentle. He recommended meditating to help with stillness and acceptance. I read a book and finally understood.

To have a name for something, even if it can't really be fixed, is like being handed a golden ticket to the chocolate factory. It's real. I'm not crazy. I'm not a faker. The guilt and shame of my body going wrong still lingers, but it's mixed in with a healthy dose of reality these days.

My dad got really sad. He couldn't deal with reading the book about it. He dealt with it as best he could, urging me constantly to keep turning stones over and trying new things to get better. Years of turning stones over taught me that those stones and the frantic hope they bring up are more exhausting than any illness could be. These days it's massage, tiger balm, acupuncture, hydrotherapy, osteo and finding my joy as best I can. I do all these things regularly and it may look like a long list but it's a tiny fraction of what I used to squeeze in to each week.

There are a lot of snake oil merchants, miracle treatments, diets, workshops, programs and rehabs. They are all expensive, have caused me a lot of pain and disappointment, and a lot of setbacks. The worst of all though is the bitter sick people. I am so freaking terrified of them - being lumped with them, becoming one of them without realising. I prefer to hide myself away than risk being that person.

Recently I've been trying out being a bit more real, being more honest about why I can't always make it to things people are kind enough to invite me to. Being less ashamed and guilty. It's a delicate balance and challenging to convey to someone you adore that you can't come to their gig because it's not possible for you to be up that late/stand that long/be overstimulated without days of painful consequences - without sounding like a whinger!

Sometimes I'm met with odd reactions like a fast change of topic. I guess it's hard to hear and know these things about someone. I water it down as best I can. If I'm telling you I can't come because of migraines/exhaustion I truly don't need sympathy or for you to do anything for me, I just want you to know that I care about you and would much rather be at your shindig than resting. Resting sucks. I know to some it would be heaven on a stick to have enforced rest, but even when I'm resting it's not restful. My body is screaming at me. My mind is racing with unaccomplished tasks. There's always catching up that needs to happen and never enough fuel in the tank to get it done. I'm worried about taking too many painkillers (I barely take any, they're all over the counter, but still I worry that it's too much). If I don't manage my pain I don't sleep properly. If I don't sleep properly I'm 100% worse than if I did.

I had a brilliant chat in the middle of the night with Larissa Tandy from Iamloveproof and The Strine Singers the other day. You should check out their music because it's freaking beautiful. She'd texted me about a gig she had last night, and I had received a message from her about something else and saw she was online and thought I'd try out that being honest thing.

Tell me about it man. You can find me livin' on chronic pain lane too. What a drainer.

Me: You're so good at rhymes! How the hell do you manage?

L:  I could write a book I reckon. If I had the attention span. 
But really, I've developed an acute ability to disengage (necessary but affects quality of relationships), and an intense focus on the things that bring me joy, like writing songs. You getting treated?

Me: Yeah I get that. You gots to find the joy or what's the point of the slog.
I'm treated all the time, it's just a reshuffling really. I've got fibromyalgia so it's a long haul thing. Annoying.

L: Fark jenny. That's intense.
I'm just wrapping my head around a potential "no cure, lifelong" situation. How the hell? You're right.. It's so annoying!

Me:  What's yours from? I have memories of a hip thing and some surgery. You're freaking amazing to be able to do what you're doing.

L: I have a list. Deformed pelvis. Old injuries that my body won't accept as surgically repaired. And the knock on effect of permanent damage to knees, back, ribs and shoulders. I'm in a weird chicken and egg situation that no one seems able to understand or resolve. It's gettin to the point where I can't play guitar a lot. Upside.. My creative output is only increasing with my need to be distracted.

Me: Holy shit, pelvises are a motherfucker.
Crunchy high five to you sister, go creative output go.

L: Fkyeah! Crunch on! It sucks you're suffering. But thanks for sharing. It's a difficult experience to describe or explain.
Me: You too. Chat to me anytime, it's nice to know not so alone in the crunchy old lady action whilst rocking out and being youth.

L: Ha! Gold

I loved what Larissa said about an intense focus on the things that bring joy. It was a bit of an Oprah lightbulb moment to be honest. After the day out at the gallery I was overtired and sore, and didn't sleep til 3 am, then woke at 8. Pain disaster, but totally worth it. Kept going and had another great day. Took it pretty easy yesterday and will again today, so I can launch into this week where I have full on funtimes happening. Radio and teaching, a birthday dinner for a friend in town, a flower arranging class, an exhibition opening in Lilydale, then a friend coming for a sleepover on Friday. Bliss. I'll snatch in bits and piece of rest where I can.

When I let it all grind to a halt, slow enough and still enough for long enough, I get depressed. Way down in the black hole depressed. If I push myself too much I'm in a forced stop, but that feels a bit better than taking on too little. Make sense? It's a constant balancing act. A tightrope walk. Every decision has big consequences. I choose giving it a go and getting amongst it when I can. I completely disengage from my physical body regularly. While that isn't healthy, it's a nice break and a necessary one.

I saw a post on a fibro group on facebook a few weeks ago that a young woman wrote. She said she would rather have cancer than fibro, because when people have cancer everyone rallies around you, brings casseroles, sends positive vibes and checks in and cares about you. Cancer will either kill you or you'll recover. With fibro, nobody seems to understand or care, and it's unlikely to kill you so you know you're going to suffer on and off for the rest of your life. I found it very upsetting and triggering to read that, but also intriguing and kind of brave. When Rel died from cancer in March I realised that was the conversation I never got to have with her. Then I realised I didn't need to have it, because being alive is such a blessing anyway.

I don't connect with the word "suffer" because there is so much more to it than that. Fibro may have caused me to be completely brainfogged all the time, but because of that I'm extremely organised and never let other people down when I've committed to work. I have amazing systems in place to make sure I know where to find things when I have no idea where I put them. My work ethic is through the roof. Perhaps it would be better if I admitted to myself that I do suffer, but it just feels jarring to even type that word. I know that when Rel died she was at peace because her pain was no longer with her, and sometimes I think of that night at the Corner hotel when I was dancing and full of energy and long for those days.. but the days I have now are engineered to be the best and happiest they can be. I'm so thankful for days out with sweet toddlers, midnight conversations about tricky subjects, understanding and love.

In conclusion, kiss your mama today and if you have any pals with fibro - blow em a kiss too!

1 comment:

  1. Amazing, amazing post. What a fantastic survival story. I feel this piece through and through. Thank you.