I realised this morning I’ve been saying the same thing for a while now:
“I just want a break”
A break from the seemingly endless run of migraines would be nice, but I know it’s probably unrealistic just now.
So using the what you can change and what you can’t philosophy, I’ve decided to take a break from something else instead – I’m taking a break from changing anything in my treatment plan for a bit. And it feels like a massive relief.
Devising a treatment plan for something as complex as chronic migraine is exhausting in itself. Over the years I’ve tried so many things it took several pages of A4 to list them all out for a recent appointment.
My daily meds, affectionately called my drug habit, that I take in a teacup from my brother and sister-in-law’s wedding, it makes me smile every day and makes taking the drugs a bit more pleasant
Fortunately I now have an excellent consultant at the National Migraine Centre so there’s plenty of support with it, but there’s still a great deal of time and energy that goes into exploring new treatment options, for example:
*Trying to make sense of research papers, articles, reviews and other people’s experiences, which are often mixed
*The highs of hoping that this will be THE ONE, and the nagging doubts that it might not be
*The financial calculations (many aren’t available on the NHS yet, or have very long waiting lists)
*The weighing up of pros and cons
*Finding out about side effects (“you might go blind and deaf and lose all feeling in your hands and feet, these are all irreversible, but don’t worry, it’s not happened to that many people. Although I suppose if you’re one of the unlucky few it is a bit unfortunate” – actual words said to me, I kid you not)
Then once a treatment option has been decided on, there’s a whole new set of things to deal with:
*The rollercoaster of side effects that affect everything from your mood to your gut to your sleep to your weight to your cognition and everything else in between – these are hefty drugs that certainly make their presence known
*Having to increase the dose just as the side effects start to settle down into some kind of recognisable pattern, however unpleasant that pattern might be
*Trying to decide when to stick, when to increase and when to decrease the dose – Is this as good as it’s going to get? Can I cope with the side effects of a higher dose? Should I decrease it, knowing the side effects will be better but the migraines will be worse? Which do I prefer, migraines or medication side effects? Aaarrgghhh!
Then there’s the point of finally admitting defeat, of knowing that the last few months and all the side effects were for nothing, however much you try and tell yourself that at least you’ve eliminated something else, it doesn’t alleviate the crushing disappointment of another treatment that hasn’t worked, another thing crossed off the ever-reducing list of things to try.
I’m tired of the cycle of hope and disappointment and especially of the side effects associated with medication changes. So I’m taking a break from making any changes to my treatment plan for a few weeks, maybe longer.
No research, no medication changes, no decisions. Just some time to be. A break from the things I can change, even though there’s no break from the things I can’t change. It’s the next best thing, and it feels great.
I’m sad that a ‘definitive’ treatment hasn’t appeared yet, but I am glad you’re taking a break from the stress of the ever-changing medication. A bit of ‘stability’, and time to ‘take stock’, is probably a good thing – even if the migraines are no better. And who knows – a reduction in the physical stress the constant medication changes place on your physical body (not to mention your mental state) might have an effect too. I have to confess that I’d been beginning to wonder whether a ‘break’ might be a good thing. Praying!! Phil xxx