‘I love your face, Mummy, even though I don’t like your pain.’ My four year old says this to me, tenderly, smiling, eyes locked onto mine. She lays a soft little hand on my cheek. Right over my damaged nerve. Right where the pain pulses and swells under my skin.
I’ve been crying all evening, hitting a new and unexpected low. She’s been watching me cry with a curious expression. I wonder briefly if I should try and not cry around her, but I realise that would be silly. People cry. Even grown ups. And she doesn’t seem alarmed. Just thoughtful. Her kindness makes me want to cry again.
I have been living with trigeminal neuralgia for a few years now. The trigeminal nerve – a big one in your cheek that wraps around the back of your head – is damaged, and it causes hot, startling pain to erupt in my cheek. It is not repairable.
Sometimes I forget I have it. Some days it flares up again, a horrible reminder. This is the worst its been in a long time. I can’t stop dwelling on all the things my pain has taken from me: evenings with friends I’ve had to cancel. Conversations with my husband I couldn’t have because it hurt to speak. Places I can’t take my children because I cannot afford to be outside on windy days, one of the biggest triggers of pain. In fact, it has robbed me of being outside, of staring out at the sea and feeling the breeze lift the ends of my hair without thinking about how much I will have to pay for it later. It is shortly going to rob me of breastfeeding my son, because I cannot remain on the same level of pain relief I am on now, and it would be unsafe for him to take more.
It robs me of energy. I am tired a lot. I can’t be the Mum I really want to be. That is the most painful thing of all.
When I’m in the throes of deep pain, I can’t think straight. My brain goes quiet. Usually it’s loud, and I’m thinking about a hundred things at a time. Not while I’m in pain.
My baby boy leans on me. He’s teething and clingy and fascinated by ‘I Can Cook’ on CBeebies. We lie on the sofa, him and me. The pain rages on. Breathe, I think. Breathe. And I think about what is in front of me. The warm weight of my baby on my chest. The way he squeezes my shoulder, gently, in a steady rhythm. The way his hair feels against my cheek. The way he smells. Breathe, breathe.
The pain doesn’t stop, but the only good thing it does is to finely distill the most important things of all. Physical pain has a way of filtering out all the things that don’t actually matter. Housework. To do lists. What other people think about me. All those things get left behind. The basic things I love and live for remain.
‘I’m not you,’ I think to my stupid damaged nerve, ‘and you are not me. I am more than this.’ It feels important to remind myself. On a bad day, I forget. I think the consequences of TN – the cancelled plans, the jobs I didn’t do, the time I couldn’t give to my children – are a personality flaw rather than an unfortunate side effect of illness. It all gets wrapped up with who I actually am. I forget that I am a distinct person, because it feels like my illness is swallowing me whole.
Someone once said to me, about a sad life event that happened years ago, ‘this doesn’t define you.’ Bad things don’t define us. They might change us and shape us, sometimes dramatically. But they don’t change who we are completely. If you live with any kind of life altering, chronic condition, I know how isolated you feel sometimes. How your pain separates you from everyone else, even the ones you love, because they physically can’t bear it with you. How that is a frightening and horrible thing. I know how hard it is to be a parent and live with this. To feel regret. To wish you were better, for your kids. I know.
But here are some things to remember:
1. Don’t compare how productive you are with how productive other people are.
Do you know why people with chronic illnesses sometimes refer to themselves as ‘spoonies’? It comes from The Spoon Theory by Christine Miserandino. She wanted to say something in response to the people who said ‘but you don’t look sick’. She uses the illustration of each person having a bunch of spoons each day. Each spoon represents a task, and they can be anything from washing your hair, to walking the dog, to driving to the shop. People with chronic illnesses have far less spoons than healthy people. And so, by the time you’ve washed your hair, tidied the house and gotten dressed, you might only have six spoons left in your hand to last the rest of the day.
I have found that my pain levels take quite a few spoons away from me, because I can’t focus to complete tasks. I also find TN attacks exhausting, so I’m down a few spoons after a particularly bad one. So why does it make sense to compare how much you’ve achieved with the person on Instagram that you know has a limitless amount of spoons? Instead, celebrate the things you did manage to do, no matter how small.
2. Lean on whatever support you have
I don’t write this lightly. I’m aware that I am fortunate to have a pretty good support network around me of people who are willing to help me. If you don’t have that, I pray that you will find people that can be there for you. If you do have it, but you’re too proud to make use of it – stop it. Let people help you. It might feel undignified, but actually, acknowledging your limits and asking for help is a strong and brave thing to do.
3. Know that your children still love you no matter what.
It’s hard when you compare yourself to other parents. I get that. I understand how it feels when you see parents going on hikes with their children and wrapping them up on a windy day to enjoy watching the tide crash in. I understand that you might think your children are suffering for it. But you know what? Your children want you – not all the things you can’t give them. Children are greedy for quality time with you. If you can, prioritize time with them over housework at least a few times a week. If you have the energy to play, then play. The housework will still be there later.
4. Celebrate the good days.
On my last pain-free day I was literally jumping for joy. I was on a high. Enjoy your good days. Suck the marrow out of ’em. (Bearing in mind you don’t want to borrow too many of tomorrow’s spoons.) You deserve to be happy, so have a guilt-free day when you can.
5. Hold on to who you are.
What makes you, you? What are all the things you are good at that your illness doesn’t change? What are you passionate about? What are the things in life that you truly love? Write it down, if you need to. Refer back to it. Your illness is not you. It’s part of you, but it does not define who you are. Whatever you do, don’t lose sight of your worth, no matter how hard it is to keep hold of.
6. And finally, remember to breathe.
Try and absorb the things around you that are good. Focus on what is right in front of you. Breathe through it. You can get through today, and tomorrow, and the next day, and your life can be just as meaningful and beautiful as anyone else’s. Just breathe.
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