God Made Everything out of Nothing, But the Nothingness Shows Through.

– Paul Valery

Today, I have nothing (at least, so far).

I am seriously dedicated to maintaining this blog regularly but, today my brain is empty – maybe no thoughts can get through when it is surrounded by pain. This is Day 2 of feeling particularly delicate so I’m sitting in my cave, hoping to feel more robust later (as I have something I really want to do), trying to stretch out my aching body parts (a warm water swim would be great about now!), with cooling gel strips stuck to my cheeks, in the dark.

Anyway, after that little non-funded advertisement, I still am empty of any coherent thought that I think might be stimulating and I don’t seem to have any inspiring little quotes or funny self- deprecating cartoons hanging around, so I shall close the laptop, take some medication and, hopefully, go to sleep.

It will all be better when I wake up!

The Path to Wellness

The following article appears in Living Wellness Magazine (Summer~ Autumn 2012 issue) and has been written by one of my Facebook followers (Fibromyalgia Wellbeing). She has also written a book to be launched 14 July 2012 – keep up to date on its release by LIKING her Facebook page.

Motivational Growth Spurt

Last night, I planned my return to work, my strategy for cleaning the house, where I would do yoga, Pilates and hydrotherapy; and my day with Z. (I’m sure I planned some other things, too, but I’ve forgotten now.)

Between last night and this morning, I ran a marathon, swam an ocean, climbed Ayers Rock, won The Biggest Loser finale, did 100 sit-ups, 100 squats and 100 push-ups…Or, at least, it feels like it! (You guys know what I mean!)

What I want to know is: how do I realign that motivational spurt (I seem to get it at about 8pm each evening) to fit in with my new (doctor’s orders) regime. I really, really want to do all of these things but, right now…I’m just SO tired!

Misophonia? Fibromyalgia and Sounds/Noises

This post is from Women and Fibromyalgia 

“One of the greatest sounds of them all-and to me it is a sound-is utter,complete silence“, Andre Kostelanetz

There is a new (at least to me) term called “misophonia” (Wednesday, September 7, 2001 , Life section, The Globe and Mail) in which sounds can cause severe reactions in people ( article written by Joyce Cohen). It has occurred to me that many of us with fibromyalgia experience extreme discomfort over certain sounds. For me it is the clicking of heels on pavement, a dog slurping its food, chewing loudly by others, humming of a motor or heating system, a baby crying, boom boxes…the list is endless. Even more alarming is an unexpected loud noise, such as a motorcycle or firecrackers. I realize that most people can find many of these sounds alarming, but for the person with misophonia, the auditory nervous system is in overdrive. Cohen writes about one 19 year old woman who becomes distressed with some specific sounds enough to “make her chest tighten and her heart pound”. I believe that those of us with a hyper-aroused nervous system suffer universally from anxiety and not only do we experience a visceral response to violence , but to anything that startles or is grating to the ears and can raise our anxiety level.

Dr. Sonia Lupien et al from the University of Montreal is doing research on the “larger amydala”. My view is that those of us with fibromyalgia have an unusually large amydala (were we born with it or does it develop through repeated frightening life events?) which “scans for threats in the environment” to the extent that many sounds evoke anxiety or emotionally upsetting episodes. We are sound sensitive and while it may seem hopeless it seems to me that like other ways in which we can train the brain, here too we can learn to work with this sensitivity.

It is said that “Family links are common” (Cohen), and in my case it seems so as my father was constantly complaining about certain noises or sounds that did not seem to affect anyone else. However, it is discouraging to read that Aage Moller, the neuroscientist at the University of Texas (quoted in Cohen) who specializes in the auditory nervous system, believes there is “no known effective treatment”. In the case of fibromyalgia I believe we can create new pathways that would allow us over time to deal more effectively with misophonia. Dr. Moller “believes the condition is hard-wired, like right, or left-handedness, and is probably not an auditory disorder but a “physiological abnormality” that resides in brain structures activated by processed sound” (quoted in Cohen). If this is so then we CAN create new ways of changing the brain and for that reason I am hopeful.

My strategy is to fill my day with lovely sounds that bring about joy instead of irrational fear, such as certain music, and listen to people who have soothing voices (like Leonard Cohen!), or try to hear rippling water in a stream, soft laughter and other pleasing experiences that soothe my ears. Not always easy, and I still cross the street if I hear the clickety clack of high heels on the pavement! I try not to rage inside at the woman for wearing such dumb shoes and I escape as quickly as possible from the awful sound:-)

The Purpose of Life is a Life of PURPOSE

– Robert Byrne

In 2008, I hit depression and it hit me back – in fact, it sucked the air out of my lungs, swept my legs out from under me, vacuumed my head of any reasonable thoughts and sat me, quite firmly, on my arse! Supposedly, this was all brought on because I was working full-time in the casino (an intrinsically depressing place at the best of times), while studying part-time for my law degree.

Anyway, at the time, I thought it was because I had no PURPOSE – I was stuck. I had 3 years to go with my degree. I had a mortgage. I couldn’t really look for a meaningful change in career quite yet.

I stuck it out (with a couple of extended pauses in there) and graduated with Honours (just HAD to put that in here!) at the end of 2010. I thought that the noble profession of law would be my PURPOSE.

Well, I only got to practice for one month before my body said: “Tee Hee, ready for the next hurdle?”

So, here I am.

Under legislation, I am not allowed to practice unsupervised for 2 years, but it seems that I can’t work for some-one because I can’t be relied upon for scheduled work days/times. My employer has been very considerate and co-operative in regards to my condition. We have tried different combinations (eg: 3 hours x 3 days per week in the afternoons, working on the weekend when there are no distractions or noise, working late at night when I seem to be less distracted) however none of these have worked on a consistent basis. I cannot envisage how I can maintain employment with this thing called FIBROMYALGIA.

So, once again, I am confronted by what my PURPOSE might be…

Getting up at 6.30am (doctor’s orders) is mighty difficult when there is no reason to be up at that time. Sitting on the couch until my mother can pick me up to take me out is hardly meaningful. Scheduling when to shower so I have enough energy to walk to my doctor’s appointment is not inspiring. Playing with my nieces and nephews will not change the world.

Now, that’s it. My psychologist and I were chatting last week about this topic. She said maybe my legacy would be via my nieces and nephew? But, to me, that’s not good enough – I want to do something big. I NEED to do something worthwhile (not that the kids aren’t worthwhile). I want to DO something, like discover penicillin or change laws.

Hmmm…I do have an idea for a round thing that revolves on an axle and is fixed to another object to enable it to move over the ground?

The Tank is Empty – Time to Refuel

After spending 5 hours with my nephew on Saturday (where my semi-step niece popped over for 3 hours, too)

Naomi cleaning the yard

My beautiful nephew, Z.

 

 

 

 

 

and a children’s birthday party on Sunday, I have nothing left for today.

But it was worth it!

 

 

 

And this is my giggle (morbid thought) for the day:

How I'm feeling today...

6.30 – Sunday Morning

Ok, 7am – really had trouble getting out of bed:

  • 6.30 – Slammed the ‘sleep’ button on my alarm clock the first time – oh, ok, arms and shoulders really hurt today. Roll back over – ooh, head spinning already. Pain generating from somewhere inside my lower legs.
  • 6.35 – Second slam and switch on bedside lamp to try to stop me falling back to sleep. Yep, arms still experiencing shooting pains. Take out my mouth splint (the very pretty(?) thing used to try to stop me from grinding my teeth at night) and rotate my jaw around – extremely stiff (I still grind my teeth but now I do it on a piece of hard plastic) and causing lightning strikes of pain down my neck.
  • 6.40 – Last slam. ‘C’mon Sim, get out of bed; you’ve worked so hard for the last ten days, don’t ruin it now!’ Pry open my eyes. Close them. Open only one eye until I can get to my eye drops. Move my legs to the side of the bed and use the movement to get my body upright. Urggh! Really? Do I have to do this now? Ankles hit the floor – OMG! The bones in my feet broke while I was sleeping (yes! that’s the only description I have for how my feet feel while I try to get them moving in the morning). And up.

Head spinning. Need to wrench open door with two hands as power has not been fully restored to my wrists. Guess what? The bones in my hands (what’s the area between your wrists and your fingers called?) were in the same tragic accident as my feet!

Still dark outside. Shuffle to the bathroom and turn on the light in the toilet so there is some light cast into the bathroom. Eye drops – AAAahhhh (huge sigh of relief)!

Light on. My brain has exploded inside my left eye – my entire left eyeball is red. Maybe that’s it! Maybe I have a brain tumour that has exploded (and can be fixed, of course)! Maybe I don’t have fibromyalgia? Hmmph, I should be so lucky (insert Kylie Minogue song here). My (under)cheekbones are throbbing!

How did I get this way so quickly? Five months ago, I still had a 28-year-old toy-boy. Now I’m lucky if I can keep up when walking with my mother’s 78 year old partner (Henry).

Swallow 12 pills in one go (I can still remember when I had to hide 1 tablet in my food because I couldn’t swallow it) with water – no Pepsi-Max – I’ve given that up 2 weeks ago!

…And over to my indentation on the couch to vegetate and wake up properly.

So why am I up at this ungodly hour on a Sunday morning?

Because I paid a ‘specialist’ $250 to be told that I need to go to sleep at 10pm, no computer after 8pm, wake up at 6am and get sunshine on my face by 7am (does he realise we’re in Melbourne!) then return, if required, in 4 weeks!

Thanks for the help, Doc!

My head (especially my eyes), body, arms, legs and VISA card feel SO much better!

A New (better?) Philosophy

One of the first things I did when diagnosed with a ‘probably fibromyalgia’ was get on the internet – leading me to blogs, medical pages and associations.  I immediately joined up to Arthritis Victoria, which has a library and loads of books about fibromyalgia.

So many of these sites remind us all to PACE YOURSELF. So that’s what I started doing. I organised a revised (with less hours) work schedule: I would go to work Monday afternoon for 3 hours, then rest Tuesday. Go to work Wednesday afternoon, then rest Thursday. Go to work Friday afternoon, and then after my busy week, need to rest all weekend. I still had pains, headaches and fog. I was still unable to go to work if it was a bad day. This ‘pacing’ wasn’t making me feel much better (it wasn’t making me feel much worse, though, either)

BUT this is not how I want to spend the rest of my life! This is an existence. This is mediocre! This is no fun (remember that word from your old lives?)!

SO…I’ve decided upon a new way of life. I’ve decided that I’m taking advantage of my good moments. I am NOT pacing myself. If I feel good enough to do a particular activity, then I’m going to do it. Yes, I will probably feel like shit later, and have to lie in the dark loaded on painkillers – But I am REFUSING to miss out on life when I do feel ok.

I do not want to sit on my couch for the rest of my life – so yes! I’m going to walk too far on a gorgeous day, at the beach, with a friend and her puppy!

Now I have to finish because my beautiful nephew Z is coming over – we will go for a walk to the park, we will draw pictures, we will play ball, he will suck all the energy out me – BUT it will be worth every minute of it!

Grab the good moments with everything that you have!

A New (better?) Philosophy

One of the first things I did when diagnosed with a ‘probably fibromyalgia’ was get on the internet – leading me to blogs, medical pages and associations.  I immediately joined up to Arthritis Victoria, which has a library and loads of books about fibromyalgia.

So many of these sites remind us all to PACE YOURSELF. So that’s what I started doing. I organised a revised (with less hours) work schedule: I would go to work Monday afternoon for 3 hours, then rest Tuesday. Go to work Wednesday afternoon, then rest Thursday. Go to work Friday afternoon, and then after my busy week, need to rest all weekend. I still had pains, headaches and fog. I was still unable to go to work if it was a bad day. This ‘pacing’ wasn’t making me feel much better (it wasn’t making me feel much worse, though, either)

BUT this is not how I want to spend the rest of my life! This is an existence. This is mediocre! This is no fun (remember that word from your old lives?)!

SO…I’ve decided upon a new way of life. I’ve decided that I’m taking advantage of my good moments. I am NOT pacing myself. If I feel good enough to do a particular activity, then I’m going to do it. Yes, I will probably feel like shit later, and have to lie in the dark loaded on painkillers – But I am REFUSING to miss out on life when I do feel ok.

I do not want to sit on my couch for the rest of my life – so yes! I’m going to walk too far on a gorgeous day, at the beach, with a friend and her puppy!

Now I have to finish because my beautiful nephew Z is coming over – we will go for a walk to the park, we will draw pictures, we will play ball, he will suck all the energy out me – BUT it will be worth every minute of it!

Grab the good moments with everything that you have!