You’re out shopping and you have your children with you who are both demanding you buy them a magazine. Whilst you’re trying to shush them you’re also trying to remember what it was that you went into the shop for and also trying to work out what to make for tea. Eventually you give in to your children’s demands and go to find the magazine aisle. As you get there you take a magazine off the shelf and as you do so you freeze and are filled with horror. The hand that you’ve just taken the magazine off the shelf with doesn’t look like yours. It looks bigger, it feels clumsy.
Suddenly you’re aware that there’s things missing. The magazine’s title isn’t written properly. Your children’s faces are distorted. The floor of the supermarket has a space.
Within seconds your mouth is numb, one of your arms has lost all the feeling in it, you try to tell your children to stop talking but they look at you in a strange way. The words sound distant to you but normal… but they’re not. You’re using all the wrong words and talking gibberish.
In less than three minutes since that hand appeared that didn’t look like your own, you have a splitting pain in your head which makes you feel sick. The pain doesn’t go away but what can you do? You can’t get to your car because you can’t see where you’re going. You can’t ask someone for help because your ability to speak has gone.
This is what it’s like to have a brain that just doesn’t behave.
This is what it’s like for me.
I am very lucky because these attacks don’t happen all the time but I’m very unlucky because I don’t know when they will happen. The longest I’ve gone without one has been 16 months, the shortest has been 3 weeks.
Living with a brain that can suddenly stop you functioning is definitely not fun or easy. My life has had to change a lot in order for us to have a sense of normality. We have things in place for if it happens. I know now that as soon as I get the first sign that things aren’t right (usually it will be a gap in my vision or my hand looking odd) I know to ring my husband or my Mum and tell them where I am and what I need them to do. It is then up to them to negotiate what happens next. I am also lucky that 99% of the time they seem to happen in the evenings so I’m usually at home where I’m safe and sound anyway.
It’s happened twice whilst I’ve been out and I’ve been able to get to my car, provide the children with crisps to keep them quiet and just sit and wait for my husband to come and pick us up and take us home.
So we have ways to cope with what could happen which means I can still do the school run, I can still go shopping, have friends round, do normal every day things but it does also mean I live in my own little bubble. I don’t like to go too far, I won’t venture out for the day just me and the kids, we will do the local soft plays and we will go to friends houses but we won’t go further than that.
I do live in a constant fear that it will happen and I have been trying very hard over the last two years to stop symptom checking and living with paranoia. I have freed myself from a lot of the anxiety by being happy living in the safety of my bubble and making the most of weekends when my husband’s here so I can do more. I have mad big progress- a two hour train journey on my own to visit my best friend happened last month and I was fine and didn’t panic once.
There are times when I don’t feel confident enough to do something, usually the weeks just after I’ve had a bad head I’ll not do very much. Some friends probably hate me turning down offers of days out and preferring to just have a play date with a brew and some cake instead but that is ‘safer’.
I miss work. I would love to go back to it one day but the fear of it happening whilst in the workplace again is just something too big to face yet and I’m glad I have set up a business that I can do from home but I do really miss what I used to do. Maybe one day I’ll get a publication in a journal again… who knows.
I hate having a crappy brain which restricts me but I really do make the most of when it’s behaving.
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