The 2012 Act Three Journey of an Actress/Coach/Writer.

Posts Tagged ‘Fibro flare’

Day 296 If I Only Had a Brain

Posted by themirrenlee on 25/10/2012

It looks like when I did last night’s (non) post, I was so foggy from pain (the Flare) that I somehow didn’t actually publish it. I have no idea how that happened.

The Flare is passing now, leaving me pretty exhausted. It was the worst pain I’ve had in months. Today I dragged myself out of the house, though, so I could spend some after school time with Nicky before I leave for Melbourne Saturday.

We like to go to the mall, have a snack, and then he looks at Lego while I do errands. There is ALWAYS another Marvel heros kit he wants for his movie making!

After all that, I have now collapsed and hope to get some sleep so that I’m even better tomorrow. I really, really want to be okay for my trip to Melbourne.

Still pretty foggy, which makes me feel like my brain has been sucked out.

I’m just recoverin’ …

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Day 146 Didn’t See it Coming

Posted by themirrenlee on 25/05/2012


Trapped under a big ol’ semi today.

Might be the rain.

Might be too much optimism last nite.

I’m just waitin’ for tomorrow …

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Day 97 The Flare is Still Lit

Posted by themirrenlee on 06/04/2012

The Flare is still lit.

Fibromites know what I’m talking about. Others: it means our symptoms go into the “red zone”, as I call it. Everyone experiences Flares differently, and no two Flares are exactly alike.

Ah, Fibromyalgia. If unexplainable unpredictability sounds good to you, then this the condition to have!

For me, right now, the upshot is difficulty in concentrating, and too much discomfort sitting at the computer. Thank god for short phone posts, but it quickly gets hard to text in the air flat on my back.

Thanks to a couple of fellow sufferers who sent kind, encouraging comments.

The Flare passes when it decides to.

I’m just waitin’ …

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Day 52 Blunt is Better

Posted by themirrenlee on 21/02/2012

Blunt is better.

It’s better than dancing around what you need to say. ┬áIt’s better than being “nice” because you’re afraid they’ll get “mad” at you, or “disapprove” of you. These are such trigger words for people. Nothing worse than people disapproving of you, or getting mad at you, or not thinking you’re a nice person, is there? Bullshit.

You know what’s worse? People discounting you, invalidating you, and walking all over you. Which is what happens if you don’t stand up for yourself. Which sometimes means, to make people really hear you, that you have to be blunt.

As I said in one of my other posts about what a motivational speaker told his class, “No one is coming to rescue you.” You have to be your own strongest protector.

This becomes of crucial importance when you have a chronic condition – especially one that’s either misunderstood or not understood at all, like Fibromyalgia. If I were to tell people I have MS or cancer, for instance, they’d understand in a minute if I said I didn’t feel well. If I say I have Fibromyalgia, the usual reply is, “What’s that?” Once I say that it’s like arthritis of the muscles (the best shorthand way I know of explaining it), a bit of ground is gained in their understanding. But that ground is quickly lost once they realize that I don’t look sick, and it confuses them.

Two days ago I wrote “Screw Rigid”, and it came from my experience with someone who was upset with me because I had to cancel our arrangement to take her shopping due to me being in a Fibro Flare. Since this year is all about progress for me, I was very glad to have had the breakthrough of being able to tell her, bluntly, without excuses or lies, that I just couldn’t do it. She tried to guilt trip me, but I held my ground and said she’d have to wait until I felt better, or go by herself.

Then yesterday I had my “Cranky” day. I was cranky because I didn’t feel well, but also because I had some residual crankiness at her for not understanding what I go through, and even a tiny bit of cranky at me for letting her attitude bother me at all. Thankfully, my comfort routine worked (see Post), and I’m not cranky today – just full of tea and sugar!

I am still having a bit of a Flare, though, so when she rang me today to find out when we could reschedule our shopping trip, I got blunt. I told her that I don’t normally make plans with anyone who doesn’t understand my condition. I said I never know how I’m going to feel on any given day, so it’s better if I either make no plans in advance, or make them with the few people I know who totally understand my needs. I told her I couldn’t let the stress of rigid plans affect my health.

Well, how amazing. She told me that she understood how hard it was for me, and I shouldn’t feel bad if we have to cancel whatever plans we make! I almost dropped the phone. I thanked her for understanding, and we made plans for a short trip that would start late in the afternoon this Thursday. She told me to ring her in the morning if I didn’t feel up to it. Wow.

Even if she does a turnaround and tries to guilt trip me again in the future, I know now that the world doesn’t stop turning when I have to be blunt with her, or anyone else, and I’ll just say what I feel. Funnily enough, I usually have no trouble with bluntness. (Or, as my mother said to me once, “Mirren, you are so tactless.” Thanks for that tactless remark, Mom.) But that’s only if it’s with things that have nothing to do with my health. With health issues, I go back into childhood button guilt mode, and find it hard to stand up for myself.

Not now, though. With this breakthrough, I will tell people what I need, when I need it, and how much I am able to give of myself. I will protect me like a parent protecting their vulnerable child. This is huge for me. Exactly what I want as part of the changes I’m looking for in 2012.

Being blunt saves energy and time. It takes courage, sure, but it’s mightier than a sword for cutting through people’s shit towards you. And if you can’t be brave for yourself, then pretend you’re doing it for someone you care for. It’s so much easier, sometimes, to do for others what we can’t do for ourselves. Then slowly, maybe you’ll be able to transfer that courage to defending yourself just for you. That’s what I’m doing now, finally, and it’s a great feeling of progress.

I think it’s a good affirmation for anyone with a chronic condition to say, “I’m worth waiting for.”

I’m just bluntly sayin’ …

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