Medication compliance and me!
Chronic Pain Ireland
Newsletter, Issue 4, December 2015
Hello my name is Andrea and I don’t (always) take my medication as prescribed!
I feel like there should be a pharmacotherapy support group you can go too when you have a long-term bond (troubled in my case) with medication to get some helpful advice. For me and I am sure many others like me, my relationship status with meds could be best described as complicated!
I have had chronic pain for most of my life and for almost 10 years now I have been on and off prescribed pain medication, this is normal if you have any chronic illness. For anyone with chronic pain, generally a cocktail of pills will be dispensed when you begin your pain management treatment, often many different combinations will be tried and tested to see which blend might suit you best for maximum pain relief.
Although these medications are effective in combating some of the pain, their full benefits are often not realized because a very high percentage of people with chronic pain, according to the World Health Organization, approximately 50% of patients do not take their medications as prescribed. This might seem like a shocking fact but I have to put up my hand to say, I am among those patients. I am not proud of it, and my actions have lead me down some pretty terrifying roads where events have unfolded that I wouldn’t wish to repeat, so why do we do it?
And for me personally, why have I done it more than once?
In my experience there is no single “formula” to perfect prescription propinquity, in my case I have control issues so it generally comes down to my own belief that I know best!
It is a very complex issue and I will admit I have in the past ‘done my own thing’ and this is never a good ‘thing’. Luckily I now have experience and at least I can spot the patterns I tend to follow. A lot of my pitfalls are common sense but sometimes all my sense goes out the window and every so often I need the occasional reminder of how my medication alliance tends to evolve. Here’ s an analogy of my meds, our troubled relationship history and me.
Generally after a flare up and feeling totally alone, isolated, desperate for help with my persistent pain, I seek out professional help, namely my pain specialist or my trusted GP, who at times feels like a trusted friend who is trying to set me up with the perfect date!
I find myself in her office where she has promised the perfect coupling of pharmacology. I am intrigued and if I am honest feeling excited that maybe this time it will be a wonderful match made in heaven.
Next stop the pharmacy, the location of our initial meeting, I am hopeful, and in truth a little nervous as I wait in line to meet my new suitor! Great anticipation follows on the car journey home and like most relationships our first night together is awkward. I am not sure how I feel about the whole thing but I am willing to give it a try. After a few days of getting to know each other the initial attraction is a little more prominent and the business of dating begins.
It doesn’t take long for things to progress and before long I am perhaps feeling a little besotted as the love story is unfolding, I am sure we have instant chemistry!
When you fall in love, your brain releases a cocktail of euphoria – inducing chemicals (including Oxytocin, Phenyl ethylamine and Dopamine) designed to set your heart thumping and of course, light a fire in your soul. So once my chemical cocktail starts to work for the first few initial weeks or maybe even months I am on a high, and often when your in the early stages of love you see the world through beautiful rose coloured glasses, feeling optimistic, more cheerful and viewing only what feels favorable and good. I tend to brush over and ignore the little things about our kinship that make me feel bad! With my mood uplifted I am more proactive, positive, and some days even a little delirious, in the words of white snake I have felt like singing out loud ‘Is this love that I’m feeling, Is this the love, that I’ve been searching for, Is this love or am I dreaming, This must be love, ‘Cos it’s really got a hold on me, A hold on me…..’
Cue – The Music stops.
One day I wake up and ‘Medication hangover’ seems to catapult me into a whole new existence.
We enter into the make or break stage of our relationship, reality sets in for me, and eventually I tend to recognize that my pill induced haze perhaps made me see only the positive points about my new partnership. The amorous high is defiantly starting to wear off, my brain is no longer producing the chemicals of love and suddenly I begin focusing on the many flaws that I have been putting up with. All of a sudden I seem to be in the most incompatible relationship in the world. All I can focus on are the irritating little habits that I seemed to have previously overlooked, brain fog, dry mouth, extreme sedation, dizziness, forgetfulness, stomach problems, constipation, and the deal breaker for me in times gone past – WEIGHT GAIN
Why didn’t I see the red flags? I seemed to allow all the warning signs to slip through my radar. So the power struggle begins.
Without even noticing I seem to have ‘settled down’ with the routine of collecting my monthly fill of medication, taking them almost unconsciously, we are in a committed relationship but bubbling under the surface I am not happy!
This is when I should go back to my wonderful GP for some open and honest dialogue, talk about how everything is going, discuss our plans for the future together, a little couple counseling if you will.
However in times gone past this is exactly what I don’t do. I tend to ‘try to change’ my partner. Maybe if I don’t take all of my prescribed pills the brain fog will go away or if I take them every other day the dry mouth will ease up. Note to self – you can’t change the medication!
So for a few months it feels like Groundhog Day, the familiar feeling of spaced out sedation when I wake up in the morning, to ending my day with a handful of pills hoping for a few hours of rest. While things look okay from the outside, scratch the surface and you will see I’m still not fully committed. I haven’t surrendered to the idea of being married to these little tablets, I can’t promise to be true in good times and in bad, in sickness and in health. I will not love and honor them, and I know deep down I cannot agree to stay faithful for the rest of my life.
In fact I am secretly flirting with the idea of breaking off our engagement. In the past I have done this, without discussing it with my team of health care professionals and going against all advice and all warnings that come with my medication I have drastically and rather abruptly ended our love affair, broken it off, gone cold turkey, with not so much as a warning or a winding down period, it was just OVER.
This is seriously dangerous, and the side effects of dramatically stopping medication can be extreme and life threatening. Withdrawal reactions can be very scary and varied the most common include flu-like syndrome with headache, muscle aches, chills, nausea, vomiting, diarrhea, loss of appetite, tremors, insomnia, anxiety, emotional distress, feeling like one is “going crazy”
Without fail, every time I do go down that ‘crazy’ dangerous road I end up back in crisis talks with my GP, the last time I did this I had a panic attack which was a truly awful and shocking experience which I wouldn’t wish to repeat.
As predicated I ended up having a frosty and emotional reunion with my long lost love – the medication. My doctor of course supervises the reconciliation and it can be very tough at the start. At this point the true nature of our relationship is revealed, I admit we haven’t been getting on as well as I hoped and maybe this wasn’t a match made in medication heaven after all.
However I promise to faithfully keep taking the dosage again and we generally agree to make a plan for the future, we might look at reducing overt time or maybe even trying something new that might be more effective. Sometimes I would find myself taking a new medication to counter act one of the nasty side effects of my current smorgasbord of consumed chemicals.
It is fair to say I have repeated this familiar spiral on many occasions, each cycle reinforces my belief about medication and me. I am not the expert! Take it from me; always seek advice before any changes to prescribed dosage.
In truth I don’t want to be on medication long term but I know it can be good for me and they can ease my pain so I live in hope that one day my GP might be able to pair me off with a perfect match, so we can live happily ever after in a blissful pain free life!
Andrea Hayes is a Broadcaster and author of‘Pain- Free Life : My Journey to Wellness’published by Mercier Press. Release date Feb 2016.