LOST

 

Day 4 – Lost another 30mg of Cymbalta today. Lost my rehab session to my dodgy tummy. Lost 3 hours to an afternoon nap. Lost the rest of the day…not sure where that went.

NOTE: To all those sending me such lovely wishes (especially in the last couple of days), I have been reading them and I thank you all; I am just not able to even think about replying to you in my current state.

 

A Plan Goes Awry

It has finally dawned on me…remember that my GP, Mommy and I are using me as a lab rat for my treatment plan. This could be the reason that I’m feeling worse (inside, not necessarily pain-wise) than I ever have before (except perhaps after an operation where a knife-wielding surgeon has carved up parts of my body)!

The plan is/was to replace Sertraline AND Lyrica with just Cymbalta:

1. maintain Lyrica dosage – 150 mg am & pm (til step 6);

No problem with this part of the plan.

2. stop taking the Prednisolone;

No problem here, either

3. Wean off Sertraline over the week;

Slowly becoming more irritable (or so I have been told!)

4. no anti-depressant for one week;

Really irritable, some collapsing on the floor in tears, really tired – this would be when I posted the SQUISH picture, and started the Things I Have Lost series

5. 4 weeks of 30mg Cymbalta;

No real help on this minimal dosage, still really tired, not quite as much crying, can’t be bothered with much, lots of pain EVERYWHERE! – and that would be The Mess That Blubbered

6. 4 weeks on 60mg Cymbalta – NOW:

Not impressed with Cymbalta as an anti-depressant (not even up to the FM dosage yet), feeling nothing but exhausted ALL the time, really noticing temperature changes within my own body

So now, I’m supposed to increase the Cymbalta again while reducing my Lyrica but I really can’t see how the Cymbalta is going to help me with pain management when it can’t even cope with the depression in my body, and it appears to be making a lot of symptoms worse

And I’m just not sure where to go from here…

Quick Note re: REAL Video

You have until June 16th to submit your photo, name, age and where you live for my REAL video project.
If your name is NOT on this list, you have NOT submitted a photo or all the information required.
If you want to be part of this Fibromyalgia Awareness Video, please submit the above details by June 16th to fibromodem@bigpond.com
Andrea Mitchell
Angel Mullin
Angela Bowery
 Angie Blair
Anna Lewis
Antoinette Spivey
Bashakei Francis
Christina Kessinger
Christina Lewis
Christy Moore
Dawn Nulph
Diane Penyige
Ellen Gonzales
Esther Oulette
Greg Jones
Heather Garner
Jaci Buntin
Janet Quinn
Jennifer Smith
 Jennifer Tatta
Jill Sims
Joanna Pye
Kate Roberts
Katie Hamilton
Kim Taylor
Laura Milligan
Leanne Venables
Lisa-Marie McCarthy
Lizette Short
Luanne Thompson
Lynne Ackley
Lynne Amherst
Mary-Ann Bourgeois
Matt Lee
Michaelle Rowe
Mike Erickson
Nicole Freeman
Nikki Barr
Pat Blavatt
Paula Rayner-Randolph
Phyllis Michelle Murphy
Rebecca Crowers
Renee Furlow
Sarah Cox
Sarah VanOver
Sharon Derhak
Shyetta Brown
Sonia Ochoa
Steph Kelly
Stephanie Agudelo
 Stephanie Evans
Susan Bowlby Pietsch
Tara Sheard
Terri O’Mahony
Tina Reeder
Trevor O’Mahony
Wendi Weiner
Yvonne Hess
***Please note this list was produced prior to the post on Facebook earlier today (anyone who sent a picture today will not be on this list!)

Things I Have Lost (2)

Hugs

Have you noticed how when we are trying to convey empathy and compassion in a message or comment, we end the post with ‘soft hugs’ or ‘gentle hugs’?

Well, I don’t want a bloody gentle hug – I want an all-encompassing, totally warm, every-part-of-the body-involved hug!

Remember those?

The type that allowed you to let every bit of stress and anxiety out in one big sigh as you were enveloped within loving arms?

The type that cloaked you from the outside world and gave you a safe haven in which you could escape?

The type which lasted long enough that your heartbeat began to match the other person’s heartbeat?

The hug from your partner, where you step into loving arms and your chest meets theirs, your tummy meets theirs, your pelvis meets theirs, where it’s not sex but still so warm and loving and encircling?

The hug that has your child (or nephew) running towards you when he first sees you,  jumping into your arms, throwing his arms around your neck, while you catch him mid-flight?

The hug from your best-friend that just says ‘I’m here. I understand. I wish I could take away some of your pain’?

Which kind of hugs do you miss the most?

NEW! Living Well with Fibromyalgia

In my endless search for ways to spread awareness and educate myself, I have started a newsletter.

Welcome to the first issue of Living Well with Fibromyalgia.

Click here to see the first issue

Currently, it might be a little boring as I am the one and only contributor; …however, if you would like to submit a story, story idea or tips for other sufferers, for upcoming issues, please email me at fibromodem@bigpond.com.

For this issue, I have posted the newsletter on a variety of different sites, pages and here – but, if you would like to make sure that you don’t miss out next time, please subscribe (at no cost) by emailing me at fibromodem@bigpond.com. I will never sell your details (I wouldn’t know how to) or send you crap!

If you are selling something, I will not be printing an article. You are able to buy advertising space by contacting me at fibromodem@bigpond.com.

I hope you can see what future issues might be like, and that you choose to support this new endeavour!

 

Dream the Impossible Dream


As kids we dreamt of being astronauts, professional athletes, actors and race car drivers. I dreamed of being an actress, then a maths teacher, then Prime Minister. Most of Australia’s Prime Ministers had been lawyers – humanities and legal studies here I come.

I kinda messed up in my final high school year (I discovered boys! and forgot to study) so my plans were postponed. So after working in hotels, in a casino, on cruise ships and then back to a casino (phew! that was a quick 15 years!), I got my act together and started law school at the age of 34.

Me (Hee! Hee!) after being sworn in by Australia’s Governor-General Quentin Bryce

It took a while but, at 40, I was a practising lawyer. The dream was becoming reality (although Prime Minister was still a while away)

Halfway through my degree, I was hit (HARD) by depression but it seemed to be under control (after many an experiment with meds) by the time I had a full-time job. However, within a month, I was having trouble getting through a full day, it was difficult to walk to the post-office and then walk back up the stairs to work, and my hands were killing me by lunchtime. Every day was a new day in pain. I had had intermittent pain and fatigue for quite a while but this was new!

Terrified of what was happening, I called the multitude of doctors in my medical team that I had acquired over the previous 4 years. Nine months later I was diagnosed with fibromyalgia and all my dreams felt distant and unreachable. I couldn’t maintain a regular work week, much less strive to be anything more than healthy. Intensely competitive by nature, the defeated feeling that resulted was new to me. No matter how hard I tried, I couldn’t see how I could succeed at my career, having a family or even staying healthy when I was constantly fighting an unrelenting condition.

“Small steps,” my doctor prescribed. Ha! Didn’t my doctor know that I was an overachiever – I was ALWAYS the best at whatever I did! Small steps don’t work for me. It has been hard not to get upset and discouraged, and most of the time I’m not (although this past week with medication changes is killing me!), but it’s really slow progress. But I am NOT giving up! I will have to modify how my dreams fit into my reality (and perhaps Prime Minister is now a little out of reach!) but being a really good lawyer who advocates relentlessly for her clients is still reachable.

I couldn’t and still can’t stand the thought of giving up because then I’d lose, and I can’t lose. It’s not my nature. Our dreams form and evolve around our life experiences, but it’s what we overcome to reach our dreams that define who we are and how we’re remembered.

Have you modified your dreams? What dreams are you still chasing despite your diagnosis?

Things I Have Lost (1)

Sleeping In

I remember, a long time ago, sleeping in, especially on a Sunday morning.

Sleeping in didn’t necessarily mean sleeping – it meant waking up, dozing on and off for a while, reading, napping, just lying cuddled up under the covers. Essentially, it was a wonderful way to spend the morning/afternoon/day.

That’s all gone now. No matter how tired I am – there is no sleeping in now.

I wake up exhausted. I can turn over and try to go back to sleep but everything starts to hurt. My muscles are extremely tight – I must have completed a decathlon in my sleep! Squeeze your bum really tight – feel those muscles at the bottom of your bottom? Those muscles are crammed together so forcefully, I can’t even massage out the cramps. My triceps (those muscles that were so difficult to work when you used to go the gym, that is: pre-Fibro) feel like they have been shredded. Moving my arms is a new lesson in pain – not only my triceps, I move my arms and the piercing agony begins to permeate the whole area that makes up my shoulders (I have no idea what all the bits are called).

So I drag myself upright, with only a half-hearted effort and my eyes half-shut. It doesn’t matter what the time is – it’s too early! I grab my fluffy bed socks, which are incredibly comforting; at least, until you stand up! then it’s onto my poor, broken feet to make my creaking, decrepit hips move my heavy, stiff legs. Quick (Ha! for a fibroMAGICian) visit to the bathroom, then collapse onto the couch.

A lot of effort to find a comfortable place to rest. Needless to say, no tai-chi for me today.

 

 

***Can you tell that it’s four days without Zoloft (sertraline) and only my first day on Cymbalta?

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!