I want to build a dark room with soft floors, padded walls and no chinks of light. I would spend all day in my room and I would be blissfully happy.
But it wouldn’t be a life. I would have no memories to look back on. My life would be a literal black hole.
I don’t have my dream black-out bunker. But I do have my duvet. And a black-out eye mask. And head phones. And every day it would be so easy to just stay in bed with these three things. But it’s not the life I want to live.
Every day I have a choice about how I live my life. Every day I have to choose.
When I got to the point of realising that the migraines were a long term fixture in my life, I also realised that I didn’t want to look back on these years and just see migraines. I didn’t want to be defined by them. I needed to rediscover the ‘migraine-free me’ and live as much of the life she would be living as I could. The migraines would just have to tag along like an inconvenient and irregularly-shaped piece of luggage.
So the migraines have been skydiving with me. They’ve been trekking in the jungle in Thailand with me. They’ve spent an evening in a souq in Doha with me. They’ve been inter-railing around Europe with me. They’ve even completed a doctorate with me.
They’ve been with me to work. They’ve also been with me to meals, to parties, to weddings, to family events, to days out and to weekends away. I might only have managed to sit quietly in a corner or I might have joined in, knowing it will take me a week to recover. Some things are just too important to miss.
None of these were easy but I’ve found I can erase out most of the migraine memories, or they just become part of the story. But I try and keep them as only supporting roles, not the main leads.
There are still a lot of things that I want to be doing but can’t. Different things hit me at different times and I deal with the frustrations as they come. Every so often I blow up about them all at once (that’s always fun to watch if you’re around).
Day to day, I have to carefully balance what I do. I hate not being able to just do things without thinking about it.
The migraines are with me whether I like it or not (I don’t).
So I have to choose to live my life to the full, even though my present ‘full’ is a lot smaller than it could be without the migraines.
Some of the choices have been small. Some have been massive.
When I was doing better in 2013, my husband and I decided we’d like to move house. We’d planned to be in our little terrace for a few years but it’s been nearer seven. We’ve loved our first house and there hadn’t been a time when we could even consider moving before but now I was doing so much better it was becoming more of a possibility.
Tim really wanted a garden, I really wanted a bigger kitchen. We wanted space for guests to stay and we needed a bigger room for our lodger (a 19 year old lad who had been in the youth group Tim and I helped lead a few years ago. He asked to stay for a few weeks and it worked really well so he’s staying for a year. It’s company for Tim when I’m grumpy or asleep, it’s company for me when Tim’s late home from work and it’s laughter therapy for us all which is priceless at the moment).
So we set about doing the last few jobs to get our house ready for putting on the market. This took a bit longer than we expected as I was starting to experience the side effects of the flunarizine, but we got plenty done in the good months at the start of the year and put the house on the market in spring 2014.
All was going well. But then the flunarizine was wearing off fully and the migraines were getting back into their vicious cycle. I’d started on the nortriptyline and was hopeful that they would soon be under control again so I struggled through the summer term at work and collapsed into the summer holidays. By the end of the summer holidays the house still hadn’t sold. We’d had a lot of viewings but no offers, but that was fine because we hadn’t found any houses that we liked (we had quite a particular wish list!).
When the migraines showed no sign of letting up, we spent a full five hour journey back from Scotland discussing whether or not to take the house off the market. There were so many pros and cons, but the migraines were a major factor in every part of the discussion. Which we both found really annoying. They’re like someone’s come and dumped a huge pile of manure in your living room and you’re trying to get on with normal life but you can see it and smell it all the time and it effects everything you try and do. And you can try and ignore it, but it’s there. And you have to find a way to live with it. Fortunately my husband is the most amazing man who ever walked this earth so he’s willing to work round the pile of manure, but it’s fair to say it’s not been easy for him, or for us as a couple.
We knew we had two viewings that coming week so we decided to wait and make our final decision the following weekend. The viewings came and went and we heard no more, so we were pretty much resigned that this was the end of our foray into house hunting. Then we got a phone call early one morning saying ‘there’s a viewing booked for five minutes time, we forgot to tell you about it. We’re so sorry, would you like us to cancel?’ 99% of me wanted to say ‘yes’ (the house wasn’t exactly tidy) but I listened to the 1% that said ‘no’ and the viewing went ahead. The viewers had offered the asking price by lunchtime.
By this point I was really struggling with the migraines and the medication wasn’t having anywhere near the desired effect. We very nearly decided there and then that we’d have to pull out – it just wasn’t feasible to think about moving house until the migraines were sorted again. But we didn’t know when that would be. So we decided we’d spend one week house hunting and if we didn’t find anywhere that would be it.
On the Wednesday our absolute dream house came on the market – it had just been reduced for a quick sale and was very nearly within our budget. It was streets ahead of anything else we’d seen and ticked all 50 of the things on our wish list (I told you we were quite particular!), plus there was no chain. We were so excited to find it, but it was twinged with a sadness as we both knew there was a good chance the migraines would prevent it from happening.
I’d also been signed off work and this added another complicating factor: was it irresponsible to be moving house when I was unable to be at work? What would people think if I came back having moved house, or at least further along the process? My colleagues knew we were thinking of moving and had had the house on the market for some time but I was really worried about how it would look. Would they think I just fancied a bit of time off so I could move house?? I hoped they knew me better than that, but it still bothered me.
Also, would people be wondering – was it stress about the house move that was causing the migraines?? Fortunately I’ve been told that stress isn’t a factor in chronic migraine (more on this in another post) but it is a trigger for many typical headaches so I guess this would be a logical conclusion for people didn’t know much about chronic migraine. Interestingly, I haven’t felt particularly stressed; if anything I’ve found myself disengaging because I’m expecting it won’t go ahead.
After much discussion we decided to put in our highest offer the next morning. It was rejected. Then we decided to increase our offer by including our furniture and redecoration budget (who needs chairs anyway?). That too was rejected. We were so close but it was just out of reach. So that was the end of that.
But then my Mum rang unexpectedly and said she and Dad were thinking of giving us some money towards the house purchase: the amount they offered was just the right amount to take us up to the asking price, which secured us the sale. Within a week the whole situation had completely turned around.
So we’re moving forwards, very slowly, step by step, re-evaluating at every turn whether we can and/or should do this or not.
The deciding factor has been this: at present it feels like the migraines have won in every other way. We don’t want them to win on this too.
They’ve stolen so much from us, but we don’t want to let them take this.
It won’t be easy.
But we’ve had lots of offers of help and if it goes ahead, we’ll make it work.
That’s our choice.
It’s our stand to say – in the boldest and brightest way we know how – that the migraines haven’t won.
We’re still fighting. We’re not defeated yet.
Yes, we might have to work around them.
But they won’t define me. They won’t define us. And they won’t define our future.
So what happened? See I’ll be There for You
Chronic migraine – what’s it all about? See first post: My Brain BSOD