This too shall pass….

When it comes to pain I think I’ve got a pretty high pain threshold. I gave birth five times on little more than two paracetamol, I walked around with a broken back for two weeks before I even went for an X-ray, I endured a broken coccyx at 8 months pregnant and still pushed around a one and two year old in a double buggy. I’ve got five bulging discs, have been crippled by migraines and lived with fibromyalgia my whole adult life. And, even if I say so myself, I cope with it all far better than some. But neuralgia is a whole new ball game and something I have been dealing with privately for the last twelve months behind a brave face and a wide smile.

For those who haven’t heard of neuralgia, it is described as the most painful condition known to man and causes extreme, sudden burning pain or electric shock sensations to the face, eyes, lips, nose, jaw and forehead. If I tell you that it is commonly referred to as “Suicide Disease” I think this speaks volumes about the level of pain it can bring.

There are two main types of neuralgia, Trigeminal and Occipital and, unlucky for me, I have both. It’s been something I have lived with on a smaller scale for a number of years, feeling that familiar stabbing in the side of my face even as far back as my teens but after having Harry, when all of my ailments reached a whole new level, it fast worsened to the point where it has left me completely debilitated at times.

The thing with neuralgia is that just basic tasks can trigger an attack. So talking, smiling, chewing, brushing your teeth, brushing your hair, washing your face, swallowing, kissing, moving your head, walking, travelling in a car, applying make-up, all of these can trigger the most excruciating pain and sometimes just for no reason at all. I can’t even begin to tell you how difficult that makes going about my daily life, particularly with four children, and yet until the start of this year I was managing to cope by having regular nerve block injections around my skull which, although didn’t completely eradicate the pain, made things a lot easier.

And then, just my luck, these routine injections suddenly triggered a range of rare side effects which resulted in the extreme loss of bone in the base of my skull, the wasting of muscle and flesh surrounding the nerves, a huge bald patch (which will unfortunately never grown back) and, thanks to this huge crater like hole in the back of my head, the nerves were left fully exposed. Basically this means that not only can I no longer touch my head without almost passing out with pain, but I can’t even do something as simple as resting my head on my pillow at night to go to sleep. And yet despite all this and despite my neurologists visible horror when he saw my head, I was simply told I had to stop the injections, go home, and I will be seen in clinic at our follow up.

So here we are, back on a massive dose of drugs, so strong they come under the Class A category, which numb the pain just a fraction but come with their own list of side effects. Some days I can’t think straight, find myself stumbling over my words, forgetting names and faces, wading around in this thick fog trying to desperately claw back my life, wondering where do we go from here?

And I don’t tell you this for sympathy, nor do I claim that my suffering is worse than the next persons, but I do think it’s important to share the lows as well as the highs. Because whilst my life may appear very differently in those colourful little squares over on Instagram, those moments are just a tiny fraction of our day, a “highlight reel”, the memories that I want my children to look back on and know that I did everything in my power to give them the most wonderful childhood possible, even when I was in agony. And those are the moments that get me through the bad days, not photos of me sat here in my pyjamas, my hair unwashed, tears streaming down my face because it hurts just to hold my head upright.

And I know it could be worse; I know that some people would switch places with me in an instant to escape their own illnesses and conditions. I know that. But some days, like this day, I can’t help but feel sad that I will live with this condition indefinitely until I either save up the money to go private for nerve decompression surgery or the NHS finally realises how utterly cruel it is to leave someone suffering with this condition for even a moment longer than they have to.

All I ask is that you bear with me if you haven’t seen me for a while, if you’re wondering whether to take it personally when I cancel for the fourth week running or take forever just to reply to a text. Forgive me if I bump into you in the supermarket and I seem a little spacey, if I zone out during conversations on the school yard, or my smile doesn’t quite reach my eyes when you say hello. Stick with me on the blog on the days when the words won’t come or I can’t find the enthusiasm to write anymore. Just know that although things are tough right now, so am I.

It would be very easy for me to climb into bed, close my eyes, and stay there day after day lamenting on a life free from pain. It would be very easy to become angry and bitter at the cards I’ve been played, wondering why, after everything I’ve been through, I’m still right here battling it out. But I’m also incredibly stubborn, and far more determined than I give myself credit for, and I didn’t fight this long or this hard just to give up at the next hurdle, or the next one, or the next. I will keep pushing through this pain, even on the days when it feels as though it’s just too hard, and hopefully, one day soon, things will all work out.

Because everything works out in the end, right?