the MIRREN LEE

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

Day 22 Tired

Posted by themirrenlee on 22/01/2012

Tired.

I’m very tired today.

Fatigue can be a good thing: it’s the body’s way of telling you to take a break, just like pain is the body’s way of telling you to fix something.

However, when fatigue and pain become chronic as a result of whatever condition you may have, they don’t feel good or useful. They feel relentless and depressing.

Luckily, I know how to control my condition now, so I took the day off from leaving the house. Instead, I paced myself and managed to get several chores done while still allowing my body to rest when it needed to.

What I have is called Fibromyalgia, as I’ve mentioned before, but after lying dormant for years as an unknown condition, being called simply fibrositis to give the symptoms some kind of name (until they figured out there’s no inflammation associated with it, which is what “sitis” means), all of a sudden (as research established that it is actually a real health issue) we are being bombarded with terms all meaning the same thing (except that, of course, they’re still not entirely sure what that “thing” is): Fibromyalgia/chronic fatigue syndrome (a lot of people are not happy with this one because they feel the “fatigue” word trivializes it, and not all fibromyalgics get chronic fatigue), myalgic encephalomyelitis (ME), myalgic encephalopathy, chronic rheumatism, myalgia, muscular rheumatism, myofibrositis (again, a misnomer), spinal irritation, and several others. It’s getting quite ludicrous. It feels like someone is sitting in a room saying, “Well, damn it, we may not know much about whatever this is but we’ll sure as hell get an impressive name to describe it!”

It really starts to take on the characteristics of black humor when one considers that most general practitioners still don’t know much about it – no matter what it’s called!

Not to get all feminist on you, oh wait, yes, I want to get all feminist on you – it’s been considered a “woman’s disease” because about 80% of women get it as opposed to about 20% of men (the figures vary, but not by much). Plus, they’re usually women over the fresh bloom of youth, starting from about middle age. Well, we all know what the mindset is about “older” women who get unusual/unexplained/unexplored/unfamiliar conditions: they must be imagining it.

I have spent over 25 years on this journey, the last five in a nightmare of escalating symptoms because “The Hell of Menopause” made it worse. If you have Fibromyalgia and it’s getting worse, please don’t doubt what you’re feeling. I say this because the accepted school of thought is that this is not a condition that progresses. It most certainly is, and to say otherwise is to call anyone experiencing this progression a hypochondriac. That really pisses me off. Especially since I’ve had to fight all these years to have my own pain and fatigue taken seriously, so I know what it’s like.

Anyway, back to tired. The good news is I know how to control my fatigue so that I can live with it.

The other good news is that I am also sleepy. That may not seem like much to you, but until just before the end of 2011, I hadn’t been able to feel sleepy or get to sleep without heavy medication for over 5 years. I had a choice of not sleeping at all, and being a zombie, or taking medication that bombed me out, and being a zombie! I suffered chronic fatigue AND sleep deprivation AND Fibro Fog (a Fibromyalgia symptom) AND medically induced “don’t operate any machinery or try to have a life” zombiedom. I hardly remember the last 5 years.

I was told it was probably because of menopause, and it would probably get better. If it had been happening to me in a torture chamber, I would have told them anything and sold out anyone they wanted, just to get some real sleep.

Then in December 2011, I stopped taking Cymbalta. It’s an antidepressant, and they have been used for years in small doses to help with pain relief. However, Cymbalta is the first antidepressant that has been recognized specifically as an aid in cases of Fibromyalgia pain relief (through double blind studies). And it did help my pain levels. But I wanted to see if the pain was still bearable without it, and get off at least one drug if I could, especially since it is highly addictive (by that I mean if you miss a dose you start to feel quite ill).

I took it for over 3 years. It is HELL to come off of, and the withdrawal symptoms are so extreme – physically, mentally and emotionally – that there are entire websites devoted to people talking about this. It took me 3 weeks of unbelievable discomfort to wean myself off it (along with really horrible emotional ups and downs), and then another week to finally stop having any physical effects at all. (Luckily, I found that my pain levels had gone down and I’m not missing the Cymbalta, so I can stay off it.)

After the dust settled, something unbelievable happened. I started to feel sleepy at night – and then I slept!!! Without medication!!! I never wake up feeling refreshed – that is an expected part of Fibromyalgia/Chronic Fatigue – but I felt like I’d had enough sleep to get up, and I didn’t feel like a zombie!

I don’t know if it was coming off the Cymbalta, or that suddenly menopause released a bit of its grip on me. I don’t know and I don’t care. All I know is that I can now sleep and it’s changing my life. I’m steadily regaining energy and find I can manage my pain levels better.

Mentally and emotionally I now feel better because I have hope. I had begun to think that I would never be able to function at any sort of unzombie-like level again, which meant that basically my life as I knew it was over. I was starting to experience a serious sense of depression, asking myself, “What’s the point of trying to do anything?” much too often.

I want to encourage any of you out there who are plummeting into the same mindset because of struggles with chronic conditions: keep trying to find the answers that will help you.

Don’t     Give     Up.

Don’t     Stop     Looking.

Keep asking questions until you get the answer(s) you want. Like in my post yesterday (Unacceptable), you may just need to find the right person to help you. Or you may stumble across the answer by accident if you try enough options.

So I don’t mind being tired, because now I’m sleepy, too. I know I’ll lay my head down on the pillow and go to sleep (still getting up several times a night due to other conditions, but I can cope with that). The thought of that is absolutely blissful. Who knew that the ability to go unconscious could be such a joyful relief?

Good night.

I’m just sleepin’ …

2 Responses to “Day 22 Tired”

  1. Great post! I’ve been making a go of fibromyalgia without drugs, and your post really helps confirm that I made the right decision.

    • I’m glad the post helped you. No drugs at all with Fibromyalgia, not even painkillers?! I can’t do that yet, but maybe someday … I am slowly weaning myself off the addictive ones – the latest being Tramadol, which is a horrible drug to shake off, maybe even worse than Cymbalta. I’m just hoping the pain will start to loosen its grip now that I’m in post menopause, and I can use other means besides drugs to keep the pain controlled. Good luck with your own health journey.

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