the MIRREN LEE

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

Day 66 Accept Drugs

Posted by themirrenlee on 06/03/2012

Instead of fighting them, I should be saying thank the Universe drugs exist.

Accept drugs.

That’s what I have to do. I fight and fight to get off chronic pain medications, along with everything else I might need, because I hate being dependent on them.

And it’s affecting my ability to function.

I’m constantly telling my doctors that I want to lower whatever dosage they’ve given me of anything, partly because I have a low tolerance for medication, and partly because I want to take the minimum I can for it to be effective, and I’m actually under dosing myself for effectiveness. Unfortunately, the prevalence of non prescription drug use in our society – cocaine, heroin, speed etc. – has affected the tolerance of people towards the heavier prescription drugs that are necessary for those of us with chronic/acute pain. This intolerance includes doctors themselves. It’s called “narco-phobia”, and if your doctor has it (and many, many do) then you will always have access to only a limited range of medication.

Luckily, I have a doctor who is the most open, creative, lateral thinking doctor I’ve ever had, who also believes in alternative therapies, AND is empathetic. Is it any wonder I travel from Melbourne to Sydney to see her?

It’s hard for those who don’t understand what it’s like to experience horrible chronic pain, because empathy is not a common trait in most people. Also, pain is something that people can’t see, unless it’s manifested in an injury, especially with blood and gore. With hidden pain, such as that experienced by people with Fibromyalgia, Lupus, Multiple Sclerosis, Trigeminal Neuralgia, Migraines, Peripheral Neuropathy, Endometriosis, Reflex Sympathetic Dystrophy, Cancers, Irritable Bowel Syndrome, Phantom Limb Pain, Degenerative Joint Conditions, Chronic Fatigue Immune Dysfunction Syndrome, Pelvic Inflammatory Disease, Osteoarthritis (with Rheumatoid you can at least see the deformities the condition causes), etc., etc., etc., it becomes almost annoying to hear that we hurt. Add to that the fact they we usually need to take heavy/addicting drugs for the pain, (medication is such a sanitized way of putting it, but they’re drugs, plain and simple), and everyone starts giving you advice on what else you can take or do.

I’ve tried it. I’ve done it. I’ve taken it. In my comments sections, I was told about DMSO, which is not known here in Australia. It is the first new thing I’ve never heard of since I don’t know when, and I am grateful for the information. What I do get tired of is people not believing me when I say I’ve tried what they’re suggesting and it didn’t work – or only worked temporarily. Especially natural therapies. I did have one wonderful cream that was recommended by a myotherapist about 20 years ago – it was made of wild flowers, evidently – and somehow it just worked. Well, they discontinued it a couple of months ago, and now I have 5 different creams I’m trying out instead!

Fibromyalgia is NOT an inflammatory condition, something that a LOT of people don’t understand, so anti-inflammatory drugs or creams don’t work with it. But I also have a bit of lower back osteoarthritis, and need anti-inflammatories for that. Ibuprofen is an anti-inflammatory, so if you’ve been taking it for Fibromyalgia and it isn’t working, that’s why. You need paracetamol, as it’s called in Australia, while in the U.S. it’s called acetaminophen (Tylenol is one brand name). With a chronic condition for 30 years, I’m almost as drug aware as any pharmacist! I think everyone should be. To not know what you’re taking, or why, is so dangerous and stupid. It also shows a lack of wanting to get your condition under control if you don’t take an active part in treating it. And not just with drugs or medical treatments, but also with alternative therapies. Everyone’s body reacts differently to whatever is thrown at it, so I definitely believe we should all try something before we dismiss it, but I also think we should be believed if we say it doesn’t work for us.

I know that it takes a lot of energy and patience to continue to look for the right treatments for whatever you have. I know that finding a good doctor is a mammoth effort. But there’s no choice. You either do it, or curl up and suffer forever. That’s not living. As part of my ongoing search for the best way to treat my Fibromyalgia, I came off Cymbalta a few months ago to see what would happen to my pain levels. I had been on it for several years, only a very low dosage, but it’s still enough to be addictive because that’s the kind of drug it is. It’s an antidepressant that has been shown to help Fibromyalgia pain when taken in low doses. It acts on the neuro transmitters in our brains.

It took me 4 long, unbelievably awful weeks to withdraw from it, and I thought it was worth it because I didn’t notice any difference with my pain. However, slowly, slowly, but oh so steadily, my pain levels have been rising, and coming back in places where I hadn’t felt pain for years, like in my feet and down my upper arms (very hard to type with). So when I see my doctor next week, I will be asking to go back on it.

I’m on another addictive drug, a synthetic opiate called Tramadol, also known as Ultram. I got my dosage cut in half by going through more withdrawal a couple of months ago, and had plans to try and come off it completely. With all the information out about it, my doctor now also thinks it’s a horrible drug, and knows about how bad the withdrawal is, but she is thinking of switching me to something that’s a real narcotic, and it will probably make me sleepy, plus won’t help the addiction issues, so I think I’ll stay on Tramadol.

It’s my nature to always want to be independent. I don’t have an addictive personality because I don’t like feeling as if I’m being “ruled” by anyone or anything besides myself. (Yes, I’ve always had a slight problem with authority figures!) So I suffer mentally having to be on addictive drugs. It means I must make sure I always have enough supplies and repeat prescriptions on hand at all times, or I start feeling withdrawal symptoms within literally hours of the times I normally take them.

But without them, I can’t function because of the amount of pain I feel, which then turns into crushing fatigue from coping with the constant pain. My muscles have become so tight that it has started to affect my ability to breathe properly. This not only affects my asthma, but my exercises for teaching voice, and acting in voice-overs. Our bodies are pretty much supported by muscles, and when they get tight and sore, everything else gets affected, as well.

It’s simple. I need drugs for my pain. I can continue looking for alternatives, for better ways of managing it, but in the meantime, if I want to accomplish my commitments this year, then I have to turn to drugs. I’ve decided I need to remember that I use Ventolin for my asthma, and don’t resent my dependence on that drug (I know too well how terrifying it is not being able to breathe). I need to also remember that if I had a condition like insulin dependent diabetes, I’d have to make peace with drug dependence, or not exist.

That’s the difference, though, isn’t it, between a life threatening condition, and “just” pain? Pain isn’t considered as important. And yet unrelenting, chronic pain can lead to worse and worse conditions, culminating ultimately, in the case of terrible hopeless depression over it, in the very real possibility of a suicidal state.

A side note before I finish. Last night I couldn’t write anything because I leaned on the oven while Katie was cooking dinner, not realizing it wasn’t insulated on the outside. So I gave myself a pretty bad burn, and today have what looks like a tiger stripe on my arm! It was too painful to try and type with it. The funny thing was, though, as I said to Katie, I didn’t really mind too much because it was a different kind of pain, and it distracted me for a while from my regular pain!

What I’m writing about tonight is another breakthrough for me this year. I accept that I have a condition that may never have a cure, I accept that part of my life has to be devoted to managing it well, I accept that some people will never understand what I have and what I need to do to manage it, and now I accept that I have to stay on the appropriate medication for as long as I need it in order to function. I can’t wait to tell my doctor and counsellor that the fight is over!

I’m just acceptin’ …

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