the MIRREN LEE

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

Posts Tagged ‘chronic pain’

Day 356 Christmas Eve Heat

Posted by themirrenlee on 24/12/2012

Here in Australia it’s Christmas Eve. I’m in Sydney and it’s unpleasantly hot and humid. The problem with a tropical climate is that it doesn’t cool down at nite like a desert climate (e.g. Los Angeles, where I was born).

Melbourne gets hot, but it then has “a cool change”. The weather is a roller coaster, and the joke is, “You don’t like this weather? Just wait five minutes.”

I’m obsessed with the weather cuz I just can’t get used to a hot Christmas.

However, I did my duty today and trekked through the mall getting my Christmas shopping done. I literally can hardly breathe now due to muscle and back pain, but I’m looking forward to taking it easy for awhile now so that the pain will recede.

I’m making a vow to put on my New Year’s Resolutions list that next
Christmas I will be somewhere with cold and/or snow. Preferably London. Somehow.

I’m holding good, healing thoughts for anyone in pain, physical or emotional or both, and hoping that 2013 will be better for you.

I’m just ho ho ho in’ …

Posted in Fibromyalgia/Chronic Conditions, I'm Just Sayin' | Tagged: , , , , | Leave a Comment »

Day 168 Miss Scarlett’s Wisdom

Posted by themirrenlee on 17/06/2012

Thank you to all those who have sent good wishes, and liked my posts, and please understand that I’m still having the TMJ flare and subsequent less sleep. That adds up to NO sleep!

Which explains my lack of replying personally.

I took a day off today, just reading and taking pain killers and putting a hot water bottle on my cheek.

I hope tomorrow can be a “doing” day because I have a rather long “to do” list, including adding a chapter to my voice coaching book.

Mentally and emotionally I’m still feeling all is possible, so that’s good. I’d like to share my positive state with any of you who are struggling – with anything.

In the immortal words of Miss Scarlett O’Hara: “Tomorrow is another day.”

I’ve always found that statement to be exquisitely profound in its banality.

But it does remind us that no matter how yukky today was, we always have a do-over arriving with the dawn.

Wishing for a better day for everyone who needs it, no matter what time zone you’re in.

I’m just waitin’ for tomorrow …

Posted in Fibromyalgia/Chronic Conditions, I'm Just Sayin' | Tagged: , , | Leave a Comment »

Day 84 I’d Like to Thank Fibromyalgia!

Posted by themirrenlee on 24/03/2012

I’d like to thank Fibromyalgia!

Without it, I wouldn’t have been informed by purplelawlady.com that she has nominated me for an award due to my writing about Fibromyalgia. Right off, I’d like to recommend you check out her site, as it’s pretty amazing. She has all sorts of interesting quotes, information, and fascinating facts about herself.

I'll take the orange one, thanks, as it's my favorite color!

These types of little awards seem to pop up all over WordPress on various topics, and I applaud them as a good marketing exercise in introducing bloggers to each other. In this case, it also introduced me to fibromodem.com, an unbelievably informative site about Fibromyalgia. It just amazes and touches me every time I see this awful, life changing condition, which was disgustingly written off for years as “an imaginary condition in the minds of middle aged women,” treated with such respect and detail.

Out of all the horrible things that come with Fibro, not the least being chronic pain and fatigue, I think the very worst is the ultimate loss of one’s sense of identity. Especially for Type A personalities, used to having the boundless energy and enthusiasm needed for projects, work, creative pursuits, a social life, etc. etc., when it all comes crashing down and we find we’re actually LIMITED by our unco-operative bodies, well, it’s not easy to take.

What we learn very quickly is that we can no longer be identified by what we DO, or our job title. Many of us actually can’t work at all sometimes, or have to work to a very curtailed schedule. It’s maddening, frustrating, and depressing. I love it when people say, “You seem depressed.” Oh no, not at all. I love being in pain all the time, never having any consistent energy, not being able to run a business like I used to, constantly battling new symptoms because it’s a “reactive condition” (I call it), so if there’s anything that can flare up with a new sensitivity, it will. Of course sometimes I’m fucking depressed, but it’s not a depression that an antidepressant can help; they just help the pain, in low doses. I kinda think that anyone suffering a chronic condition (without a cure), who doesn’t experience periods of depression, is someone I’d have trouble relating to. Maybe they enjoy it?

So we take pain management courses to learn to distract ourselves from the pain, and counselling sessions to learn not to blame ourselves for how we got in this situation, as well as learning how to forge out a new identity within limited parameters.

And all the time, endlessly, relentlessly, we continue to educate people – our family/friends/doctors/others – on what exactly is wrong with us. Sometimes it works, often they just can’t comprehend it. It’s not visible, we look too well, we don’t sound in pain, we don’t seem sick. The joke is, all the hard work we put into trying to appear “normal”, and not like an invalid, is the very thing that works against us!

A friend of mine said it best when someone commented on how well he looked: “I’m like a defective apple – rosy on the outside, but rotten to the core!”

Part of the “conditions” of the nomination is I have to try and nominate 6 others for it (nominating our “competition”? lol), so I will go and look for them now. There are so many people out there writing about Fibromyalgia, it’s truly inspiring.

So thank you, Fibromyalgia, for giving something back, instead of just taking from me all the time – my health, energy, patience, sense of identity. You still haven’t got my optimism, though, or my fighting spirit. And you never will. I may not be able to defeat you … yet … but I sure as hell can control you.

I accept this nomination in the name of all Fibromites: rock on and don’t give up!

I’m just fightin’ …

Posted in Fibromyalgia/Chronic Conditions, I'm Just Sayin' | Tagged: , , , , , , | 1 Comment »

Day 11 Chronic Conditions

Posted by themirrenlee on 11/01/2012

Me on a freighter trip arriving in Ensenada Harbor (notice their huge flag!). For 3 weeks I managed to climb dozens of flights of stairs between my cabin and the dining room - a huge achievement!

Chronic conditions.

Whether it’s an illness, an injury or some situational problem, any chronic condition can make your life a living hell.

Do you have one, or know someone who does?

They are the very epitome of an example of it’s not what happens to you, it’s how you react to it. Some people withdraw, some express their unhappiness non stop, some stoically put up with their lot, some get depressed, some lash out at everyone around them, and some use their condition as an excuse to not live their life fully.  Obviously, there are many other ways I could list, but you get the idea. The interesting thing from a people watching point of view is simply how people do react to their conditions. The reactions give you an insight into the very depth of their personalities, and reflects on how they handle life in general. The reverse is also true: the way a person acts toward someone with a chronic illness says something about their personality and what to expect of them when faced with life’s problems.

Anyone who has a chronic condition, especially an illness that is not fatal but has no cure, knows what I’m talking about. Anyone else probably doesn’t want to know what I’m talking about! As I’ve said before, chronic illness is boring to people who don’t have it. Chronic pain even more so, with the added bonus of making non sufferers impatient with the sufferer. It’s hard for “outsiders” to remain constantly sympathetic to pain and suffering that they aren’t feeling – the same kind of “compassion fatigue” that affects those being asked to give again and again to global appeals for help.  You can’t blame them for thinking: “WHEN will things get better?” or “WHY don’t things get better?”.

However, it means we who have chronic conditions suffer twice: first with the symptoms of the conditions themselves, and second with the struggle not to feel hurt (and guilty!) at the reactions of those around us, who struggle to give us the sympathy/empathy we need.  Hell, even just understanding, if nothing else, would be a gift! And that includes from our health care practitioners, who are often the least understanding of all.

I treasure those people around me who DO understand, and help me, and give me both sympathy AND empathy.  They’re rare, but I have a few, and I don’t know what I’d do without them.  They have helped to put me in one category of sufferer I haven’t mentioned: the one who never stops believing that there is something more they can do to help themselves get better. The one who never gives up, who hits their wall, stops to take a breath, and then crashes through it again and again. The one who believes there MUST be a reason for the suffering, even when they can’t imagine what that reason could possibly be. Then I remember the times I’ve helped others with their attitudes to their chronic conditions, and think maybe that’s it. Maybe what I go through, all my experiences over 25 years since being diagnosed with fibromyalgia (when it was first called fibrositis), might help others to improve their quality of life.  Maybe my ups and downs, my dozens and dozens of different types of medical/chiropractic/osteopathic/physio/myotherapy/Chinese/remedial massage/acupuncture/sleep therapies/meditation/mind body connection awareness/counselling and etc. etc. etc. techniques, along with endless medication experimenting, will prove useful to others as information of how they affected me, and how they might help fellow sufferers.

So chronic conditions are no different than anything else when it comes to making choices in our lives. Are you going to fight whatever it is you have, and live life to the best of your ability (think of the courage of people like Christopher Reeve, Stephen Hawking, or anyone with a disability), or take the negative path and feel sorry for yourself? Yeah, it sucks, but it is what it is, and if it comforts you, there’s the cliche thought that there’s always someone worse off.  Frida Kahlo got hit by a tram and painted for the rest of her life on her back, Laura Hillenbrand has such acute chronic fatigue that after she wrote “Sea Biscuit” she couldn’t even do a book tour. See the movie “My Left Foot” about Christy Brown and his battle with cerebral palsy – it’s a good insight into the effort that foot and mouth painters go through to draw such beautiful art without the use of their arms and hands.

I write about this tonight because it is part of my new journey this year. I was lucky enough to start the year with a fresh approach to my condition, thanks to new health practitioners, and I am daring to have hope that I’ll be able to fulfill the commitments I’ve set out for myself because I will have more strength and endurance.

I dedicate today’s blog to all the sufferers out there of chronic conditions. Don’t be negative, don’t give up. There is hope. Be like a shark – just keep swimming until you find the help you need to function as best you can.

I’m just swimmin’ …

Posted in I'm Just Sayin' | Tagged: , , , , , , , , , , | Leave a Comment »

 
%d bloggers like this: