the MIRREN LEE

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

Archive for June, 2012

Day 181 Cusp

Posted by themirrenlee on 30/06/2012

Tonight’s the cusp of the beginning of the second half of the year.

Time to take stock, see where I’m at.

Tomorrow.

Tonight I’m reading a fantastic book and recuperating from stretching and other protocols to help myself.

I had some big insights and shifts today.

Need to sort them in my head.

Back tomorrow.

I’m just ponderin’ and readin’ …

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Day 180 Hard to Help

Posted by themirrenlee on 29/06/2012

I’ve had a bad few days, as can be seen with this blog. An event last night showed me another thing that a chronic condition like Fibromyalgia takes away from its sufferers.

The ability to help others as much as we’d like to.

Instead, we’re the ones usually having to ask for help ourselves.

The friend I live with gets chronic, acute migraines, often ending up at the ER. Last night she had a bad turn, and her husband (who’s a doctor) couldn’t really figure out what was wrong with her as some of her symptoms were different.

I stood by, helping in any way I could, even if was just moral support. Finally, around 3am she went to sleep, and Roman went to bed, knowing he had to get up around 6:30am.

I said I’d keep an ear out for her so he could sleep, and I ended up not being able to sleep at all – either last night or all today. So now I’m exhausted, sore and frustrated that I can’t control my body yet again.

When my grandson, Nicky, got leukemia in 2007, at age 6, I was still able to help his parents as part of a team working together – to reach a happy conclusion, thankfully.

Now I wonder about how much use I’d be today, with such limited stamina.

I think most people like to feel they can help people close to them if it’s needed. It’s a very personal gift, which no money can buy. As the ad says, it’s “Priceless”.

So when we find ourselves severely limited by our health, it’s hard not to feel diminished yet again by what we CAN’T do.

All I can do is refocus my energies on getting as well as I can, and stay positive about the eventual outcome.

Any other – negative – mindset will simply leave me needing more help than ever, with an inability to turn it around. I refuse to accept that possibility.

I’m just tryin’ to help …

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Day 179 My Routine

Posted by themirrenlee on 28/06/2012

Today has to be an off one.

I’m just a bit gaga …

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Day 178 The Only Answer

Posted by themirrenlee on 27/06/2012

Often I do too much without meaning to, and then no matter what good advice people try to give me, the only answer is a hot water bottle and sleep, if possible.

This is when I get really frustrated and upset with having a chronic condition.

The mind is so willing and the body is so unco-operative.

And the worse thing is I look so
“normal”!

I’m just feelin’ flat …
(The only position that doesn’t hurt.)

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Day 177 Insane Insomnia

Posted by themirrenlee on 26/06/2012

After last night’s effort all about sleep, I feel the need to take a Mental Health Day since I DIDN’T SLEEP.

Feeling very tired and cranky.

ADDENDUM TO YESTERDAY:

YES I DO OR HAVE –

MEDITATED

DONE RELAXATION THERAPY

LISTENED TO SOOTHING TAPES

TRIED SLEEPING/GETTING UP AT CONSISTENT TIMES

TAKEN HERBAL/CHINESE REMEDIES

None of it works/worked. I still have insomnia. I was told when Menopause came it would get better.

They lied.

I do not agree with the common idea that somehow we are more virtuous if we get up early – especially if we didn’t sleep.

I’ve worked hard to figure out what I need, and to express this to those in my life.

Everyone knows “I don’t do mornings”. (This why I had to quit coaching in film/TV – the early starts and long days.)

Everyone knows I don’t make plans; I won’t know how I’ll be feeling.

Everyone knows I don’t like to socialize with more than two people at a time; I don’t have the stamina.

Everyone knows my routine is usually one day on, one day off – unless I’m having a Flare or feeling seriously sleep deprived. Then it could be days off.

I am a fun, happy, energetic person when I’m managing Fibro/insomnia. When I’m not, I’m a black hole of fatigue and despair. So that’s why my loved ones help me function as well as I can.

I know I’m lucky now my children are grown and I have no one to be responsible for, but I went through those years with Fibro and my sympathies go out to those still in them.

At least with Fibro doctors admit there’s really nothing that can be done about it yet. With insomnia, however, there is an underlying feeling that there’s something we could do to help ourselves make it go away.

WHAT?! What’s the magic bullet? I sure haven’t found it, and it’s not for lack of trying.

Maybe we should put a poster on the Internet:
WANTED – Cure for Insomnia
REWARD: Whatever you want!

If anyone has any magic answer I don’t know about, please share.

In the meantime …

I’m just not sleepin’ …

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Day 176 Sleeping – NOT!

Posted by themirrenlee on 25/06/2012

Okay, here’s my personal view on sleep.

Insomnia sucks. Big time. It affects everything else in your life and body. It makes certain conditions worse, such as Fibromyalgia, or any other condition that involves muscles getting tired.

Sleep deprivation is used as a form of torture.

Sleep deprivation studies have proved, over and over, that people who are in that condition can’t function as well, i.e., safely, in their lives and deteriorate in their general health and sense of well being.

Sleep is a subject that affects EVERYONE. Maybe you sleep well now, but won’t when you get older, or maybe you know somebody with a sleeping problem. With today’s societal stress levels, the purchase of sleep aids is through the roof – from medications to mattresses – so chances are good that most people will get affected at some time with some form of insomnia.

When I was in my twenties, I was a smug little thing about insomnia. People would tell me they couldn’t sleep and I’d wonder to myself, “Why not? If you just lie down and close your eyes you’ll fall asleep.”

So now I’m being punished for that smugness, I’m sure of it.

I haven’t slept really properly for about three years or more. I had sleeping problems before that, as the Hell of Pre Menopause came raging in, but the really bad, I-don’t-sleep-at-all-without-drugs, pattern began about that 2009. It has been a nightmare (no pun intended) – made worse by the fact that I can’t just ignore it and be the night person I’ve always been. That would mean I could stay up and work through everything I need to do, including my writing. The problem is, with the Fibromyalgia having also gotten worse with the Menopause, my chronic fatigue and sore muscles make me need to lie down and not sleep. I have the world’s most irritable bladder, as well, (yes, I’ve had a bladder stretch), so unless I fall deeply asleep, I’m up every hour, AT A MINIMUM.

So I lie awake, night after night, dozing occasionally, then needing to answer my bladder’s constant demands, and going slowly mental.

Next step: let’s take drugs. My experiences:

VALIUM:  Muscle relaxant, so have taken 5mg. every afternoon for a couple of decades to help them relax in the afternoons when they get their tightest. It does not help me sleep. And, no, I’ve never had an addiction problem with it. If I run out, I have no side effects, and I’ve never increased my dose. I have found doctors to be totally unreasonable about not giving out Valium, and yet if it’s a “muscle relaxant”, wouldn’t relaxing muscles seem to be its job, as in conditions like Fibromyalgia? All together now: a big “Duhhhh …”

TEMAZEPAM:  First given to me for sleep in hospital after I gave birth to Sarah 25 years ago. Have no idea why they did that – I wasn’t consulted – but that’s how I discovered it. It is my favorite drug of all time – or should say was. It gives about 4-6 hours of deep sleep, with such a short half life that there’s never a hangover. It even acted as a muscle relaxant for me, and again with no addiction or increase issues. However, unfortunately, once the insomnia hit like a Hummer, the Temazepam just simply STOPPED WORKING. So weird, but true.

CIRCADIN:  Slow release Melatonin. Very expensive because not on our “free list” yet for people with a health care card. I tried it, wondering why I didn’t just get Melatonin over the counter, which I’d also tried. Anyway, bottom line: didn’t work. I will reiterate, though, that Melatonin is LOST under light, so if you get up in the middle of the night, try to do it in the dark. (I hit my bed on the bathroom door last week, but that’s not common!)

STILNOX/AMBIEN/LUNESTA, etc:  Stilnox is the common one in Australia, but it’s now got a bit of a horror drug reputation as the stories of people doing things in their sleep come out. I found it like a general anaesthetic – and couldn’t recover for two days! So yes, it works, but too heavy. And a friend of mine got addicted. As for the others, to read about how they differ or are the same, and the others in the same range, just Google for the info. I find that they’re all just too strong. Remember that the same drugs can have different names in individual countries, so you should check the generic names for comparison.

LYRICA:  I take about 50mg.  Not on Australian free list.  Supposed to be a pain killer, but I find it acts as a sleep med., after about 5-6 hours of taking it! Bizarre. The same thing happens with …

PHENERGAN: Usually given to children for sleep, it also works for adults in large doses. I take about 30mg in the late afternoon, and it also helps with my sinus issue of post nasal drip. Both Lyrica and Phenergan take hours to work, and then the hangover occurs all the next day. No prescription needed for this one, though.

ANTIHISTAMINES: I am so sensitive to them, that they all make me sleepy. Phenergan is an antihistamine, as is Mersyndol Night Version, which is Paracetamol/Codeine and an antihistamine. I often take Mersyndol Night because it gives me pain relief as well as sleepiness – but it does also give me a hangover and a headache!

I really understand how Michael Jackson got to the point where he wanted what was in actual fact a general anaesthetic to help him sleep. One gets so desperate with the ACHE to just go unconscious. And what we’re told to do simply doesn’t match reality – the truth is, everyone knows there is no easy way to help insomnia.

SLEEP HYGIENE: Just the phrase alone irritates the hell out of me, as if you’re not getting clean enough to sleep! Fact is, it’s a useless concept because everyone is different in what they react to. So when they say No TV, that may be precisely what puts you to sleep. The same with no reading, have a bath, have hot cocoa (I have NO liquids other than water after about 5pm with my bladder!), nothing in the bedroom like a TV or anything that is not connected with sleeping. Even No Exercise, and yet my gently stretching helps me feel less pain in bed.

SLEEP APNEA: I had sleep studies done, and the doctor said I slept fine! I KNOW I was up about 7 or so times to pee because I had to get unhooked, but she said I was fine, and just needed better … sleep hygiene! Then my friend had a study done and found she had life threatening sleep apnea – holding her breath sometimes for 30 seconds or more. So if you think you may have it, you should get it checked. I personally have choking from the sinus issue, and will go back to the ENT guy for better answers than he gave before, which was it’s just catarhh.

SLEEP WAVE: This is a theory from Deepak Chopra. He says we all have a natural rhythm for getting sleepy, which he calls a “wave”, and when we feel it, we should go to sleep right then or we might have to wait awhile for the next wave. That’s all very well, EXCEPT that we might get our sleep wave in a meeting, and then not have another one until the next morning! That’s what insomnia is, folks.

BIO RHYTHMS: The concept that we all have times when we have the most energy, or desire to sleep. So I was always a night person, feeling a perfect schedule was to sleep from about 2/3am-11/12am (I have always needed at lease 8 or 9 hours of sleep). I couldn’t do it while raising children, of course, but when they both grew up, I loved following that schedule. Now it’s more like fall asleep at 7am and get up at 2pm. My friend says, okay, just do that, but I find it hard to wake up and feel the day is almost done in the “outside” world, especially since I couldn’t get much done during the night because I was sore and tired from sleep deprivation!

However, I missed the EastWest massage day yesterday because my insomnia caught up with me, as it does, and I woke up too sick to move. So I’m now rethinking exactly what to do since sleep deprivation is now my biggest problem – with the pain and chronic fatigue exacerbated by it. With more sleep, I think everything else might just be under enough control to have my life semi back the way I want it.

I’m going to try having a schedule where I allow for what ends up helping me: at least 36 hours in bed, sleeping as much as I can, which usually amounts to about 7 hours! I go to bed at night, sleep all the next day and night, and get up the day after. I know that sounds bizarre, and maybe even appalling, but it’s the only thing I’ve found that works. Today, after I got up around midday (having gone to bed Saturday night), I have been wide awake and had enough energy to run around like a busy beaver organizing lots of “To Do” tasks. I will be sore and tired tomorrow, of course, but I can keep that up for a certain length of time before I crash again. I may make it once a week, once a fortnight, or every 3 days. I don’t know yet, but I think the concept in general is the only thing that will help me. And, oh yes, the plan is drug enhanced, of course!

So that’s my take on sleep. I think it’s a very personal, individual problem, with everyone reacting differently with their version of insomnia. I also think most doctors don’t really care about our sleep issues, not taking it as seriously as they should, considering that lack of it can cause chronic/acute conditions of other kinds.

NEW DRUG:  Everything I’ve mentioned – and much, much more – can be Googled, so do some research on your own. That’s how I found out about the newest drug on the horizon. It’s being developed by Merck & Co., and here’s a bit of the press release:

Suvorexant, in a new class of medicines, proved to be significantly better than placebo, meeting all but one of the goals in one of the two Phase III trials with about 1,000 patients in each.

Based on the data from these and other trials, Merck said it expects to file for approval of the drug later this year.

Unlike sleep drugs that are typically taken as needed, suvorexant is designed to be taken nightly over long periods of time. A new type of medicine, suvorexant works by blocking chemical messengers called orexins that help to keep you awake. Blocking orexins, which originate from the hypothalamus in the brain, helps facilitate sleep.

And they go on to say it helps to KEEP people asleep, which is a big problem with other drugs. So let’s hope this gets pushed through and we hear about it being available sooner rather than later.
All I want is a switch in my brain to click to “Off” when I’m ready to sleep. Is that to much to ask?
I’m just not sleepin’ …

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Day 175 M.I.A.

Posted by themirrenlee on 24/06/2012

Mirren is Missing in Action.

She was so sleep deprived from buffalos running over her in the middle of the night that she decided to stay in bed until she feels she’s had enough sleep.

This may take a couple of days.

But probably not, with the magic of drugs.

That is all for now …

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Day 174 Shiatsu Sharing

Posted by themirrenlee on 23/06/2012

It’s interesting what happens when trying everything you can to combat a chronic condition. Sometimes they work, sometimes they don’t, and sometimes you learn really interesting facts.

I’ve discovered, for instance, that a Shiatsu massage is like having a workout with the masseur doing all the work! The pulling and pushing left me me feeling tired, but in a good way. Until the middle of the night, when both legs flared up. I took drugs and slathered on Blackmores Pain Relief Cream (which works really well in general for my muscles), and went back to not sleeping.

When I got up today, I was pretty stiff all over, but then it slowly calmed down and I have to say I like how my muscles feel as if they’ve had a pleasant workout. Except for my hips, which are sore, but as I said yesterday, I let her push me too much – my bad, not hers.

Tomorrow is the 3 session marathon, and I will tell the Shiatsu person to be gentle. The Massage and Reflexology people are no problem, so I’m hoping to end the day in a pleasant haze.

I’m really tired and would desperately like to sleep tonight. At least tomorrow it won’t matter how I feel because I’ll just be lying down while people work on me.

I have this theory that if I were rich enough to be massaged every couple of hours, my muscles would “forget” to be sore and I’d be cured! Would love to try that theory out. Maybe I should try to raise the money on www.kickstarter.com

Wouldn’t that be a hoot?

If you haven’t had Shiatsu, I recommend it, but with the proviso that you have it done as gently as possible.

I’m just closin’ my eyes …

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Day 173 Shhh … iatsu

Posted by themirrenlee on 22/06/2012

Well, now I know what Shiatsu is. I like it because it involves lots of stretching, and I like the Yoga room style of set up, done on a sheet on the floor. And because there are lots of individuals being worked on at once, it’s blissfully quiet with no pressure (I put upon myself!) to talk. Everything is whispered.

However, I can’t turn my head comfortably to the side when I’m lying on my front because of the acute osteo arthritis in my neck. I will take a small pillow for my session on Sunday.

I also need to have less pressure with the stretching. I let her do too much and now I’m sore. It’s a different kind of therapy, and I wasn’t surprised to see only women patients because I know men don’t like – and can’t – stretch as easily as women.

I have a lot I want to write about, but I need a hot water bottle, some drugs, and relaxation meditation.

I’m just stretchin’ …

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Day 172 Again!

Posted by themirrenlee on 21/06/2012

Okay, everything settling down, but head still aching with other residual TMJ symptoms. Damn, that’s a nasty flare.

It was one of those days where finally I could have slept for hours, but had to visit post office to Express send David’s birthday present for Sunday. Mind boggling that my baby is 45 years old!

Then Sarah came for our first visit together in ages. Can’t believe my other baby is 25! We live in the same city, 20 minutes apart by car, and yet life gets in the way of getting together much.

Sarah had a reflexology visit to the place I wrote about, and of course loved it. We’re both going on Sunday, as well, for their all day event, plus I’m having my first shiatsu tomorrow night. Then they have a term break for about a month. What will I DO?!

My eyes are burning, and my co-ordination is way off. So rest time now.

I’m just realignin’ my day numbers …

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