The last few months I think I’ve cried more than I ever have in my life. Not the usual snotty snivvles or temporary hormonal outbursts I can be quite partial to, but full-on, gut-wrenching, soul-tearing, heart-breaking cries that originate somewhere deep in the belly, that alarm the neighbours and drench my husband’s t-shirt like he’s stood in the rainforest during a monsoon.
I’ve had disappointments and break-ups and bereavements but this feels like something different.
It’s a fundamental shifting somewhere deep in my core.
After years of struggling on and pretending I’m alright… of telling myself that everyone gets headaches… of sincerely believing that the mind can conquer all…
The realisation has been slowly dawning that I am not ok. My migraine-filled life is not ok.
I’ve been fighting for so long. Fighting to keep going. In this current round, every day since Easter has been a battle. And I’m all out of fight.
Or maybe I need to fight in a different way.
A few weeks ago I had a major disappointment. In a telephone review with the consultant from the National Migraine Centre he said that he would have expected the nortriptyline to have made a much greater impact by now if it was going to work: so we’re going to withdraw it and try something new. I was devastated. As much as I tried to think positively – we’ve eliminated something, we’re closer to finding the one that will work – all I could think was that it was four months wasted.
He recommended topirimate, which I’d heard lots about but was cautious to take due to the side effects and other, not insignificant, implications. But in the end, we had to give it a go: in the words of a wise friend, staying as I was really wasn’t an option. The plan was to slowly increase topirimate at the same time as slowly decreasing the nortriptyline. So I was likely to have withdrawal symptoms alongside a whole host of new side effects. Marvellous.
This time going to the GP was really tough. I was beginning to understand that there was still a very long way to go. We’d barely even started. In fact, we were pretty much back to square one.
He talked through the treatment plan and I agreed to try the topirimate (after all the discussions I’d already had with Tim and other family and friends this was the easy bit). As he was talking, I zoned out. All sorts of thoughts were running through my head:
This is really serious.
I should have kept on going.
I couldn’t keep on going.
We need to sort this out.
This is going to be tough.
He handed me a sick note – it was another four weeks.
I held it together at the pharmacy until the lady handed over the new meds and asked me to confirm my name and address. It came out in a mangled ‘nagumpff’ and the tears started rolling down my face. I showed her my driving licence instead and ran out of the shop. I knew no-one was home so I texted Ruth (a good friend who lives just round the corner). Thankfully she was home from work so I power-walked up the hill, big sobs escaping every so often. I certainly got some interesting looks.
When Ruth opened the door it was like something in me exploded and a howl escaped from my lungs – she bundled me inside before the neighbours called the police (or probably the RSPCA judging by the noises I was making).
It’s taken a long time to get my head round the fact that I’m signed off work. It’s been a big shift. I’ve always worked hard, got involved, given my all. Yes, I’ve had holidays and duvet days, but they’ve been temporary respites. This is something different.
In some ways, being off has taken more strength and courage than soldiering on at work. True, it’s a different kind of strength, a different kind of courage. I’ve had to explore feelings of failure, of guilt, of letting people down. I’ve had to let go of so many things that are important to me. I’ve had to admit that my body doesn’t work the way it should: I can’t rely on it like I used to. I’ve lost the security of my health – something I always took for granted and something I now feel lost without.
I’ve had to re-discover who I am without the defining feature of work, not to mention the other voluntary things I’ve been involved in that I’ve also had to give up over the last few months.
Who am I? What is my value when I don’t contribute to anything?
If I was talking to anyone else in this situation, I’d be saying ‘of course you have value, you are hugely valuable just for being you, you don’t have to do anything to be loved or valued’. And I do believe that’s true.
But that doesn’t stop me feeling inadequate, broken.
I’ve still got a long way to go, a lot of thinking and exploring to do.
I know who and what I want to be. I know who and what I have been. But I don’t know who or what I am now.
The last few weeks have been tough. Really tough. But a new perspective has started to emerge. It’s only a theory and I’m still testing it out but I’m starting to wonder this:
For a lot of years I’ve spent all my energy fighting against the migraines (see part 1 Have you tried…?) and/or fighting to just survive with the migraines (see part 2 London Baby!). I didn’t even really know I was doing it. I’ve had a few breaks but chronic migraine has always reared back up. This last round nearly broke me. I don’t think I can go through this again.
So, what if I leave the fight, and go on a journey?
A journey to find the migraine-free me.
The me that exists separate to the migraines. The me that is not defined by what I can or cannot do. The me that knows who I am, even if I don’t do anything at all.
And so, amongst other things, this blog was born. An outlet for me to spew it all out onto the computer and finally admit, to myself and to everyone else, what it’s been like. Somewhere I can capture it all. Release it. And then leave it behind.
I don’t know what’s ahead, but I’m ready to go on the journey.
Next step – The Choice
Chronic migraine – what’s it all about? See first post: My Brain BSOD