The Ultimate Guide To ‘Just Getting On With It’ When You Have Trigeminal Neuralgia

I have trigeminal neuralgia and my face hurts all the time.

I can’t be alone in saying that sometimes I find those ‘positivity’ and ‘it’s so important to love yourself’ posts on social media just a little bit annoying. I don’t always want to read affirmations to myself in the morning, I don’t always want to visualise myself reaching my goals, I don’t want to ‘take days off’ for myself. I feel like none of the ‘guides’ I see out there are made for me, because my mood varies from being super upbeat and positive, to being depressed and down.

I have had chronic face pain since 2015 and I feel like I’m at the stage where I can, mostly, continue with my daily life as normal. Here are my personal favourite tips for just getting on with it when you have TN:

Forget the ‘spoon’ theory

You’ve woken up, got washed and dressed, tackled a load of washing or hoovered the living room – next thing you know, you’re completely zapped of energy, or you’ve run out of ‘spoons’. The ‘spoon’ theory to me looks like that’s where it ends; you’ve run out of ‘spoons’ and you can’t do anyore. However, when I hit that wall, I can’t afford to crawl back to bed where I really want to be. I have Evie’s medication to sort, I have mouths to feed, I have a job I need to get to. I’m quite blessed in the fact that I’m still able to work with my facial pain, so I don’t want to take that for granted. I don’t really ‘do’ time off work and I never have done, so time off now would feel so detrimental to my mental health. I think it’s quite easy to see a lot of people with your medical condition being ‘spoonies’ and talking about how they used up their ‘spoons’ by midday today and think that’s what you’re just supposed to do now. Personally, I like to take about time out for a few minutes and then power through with the things I need to get done and I feel so much better for it afterwards, even if I have to keep stopping and starting! Whilst there’s some days I physically can’t do anything, I don’t invest in the spoon theory, because I worry for my mental health when I think about it.

Invest in appropriate hair-care products

Everyone’s TN has different triggers, but one of mine happens to be touching my hair. Some days I can wash and style my hair, but others I can’t touch my it, never mind brush it! I’ve found a nice combination spray in conditioner and the famous ‘Tangle Teezer’ does the trick nicely for an easy brush through, on the days I can wash my hair. For the days I can’t, I would like to thank Batiste for helping me look presentable for work with a quick spray and rub in with my hands, before I shove my hair up in a messy bun! If you’d like to read more about hair care with TN – click here!

Be prepared

I’ve had TN since I was 23, so I’ve learned, for the most part, when I’m going to get a flare up. However, I can’t always avoid situations which are going to trigger the pain, so I make sure I carry a bag of ‘just in case’ things with me at all times! These usually include:

  • Painkillers (I also keep a pack in my drawer at work!)
  • A scarf in winter, even if the wind doesn’t seem so bad first thing
  • Change for a taxi, in case I ever need to get home quickly (sometimes I do have to admit defeat and rush home to my warm little house)
  • Little ‘hand warmers’, if I need to sooth my face with heat at short notice!
  • A cup-a-soup. So I can still get some food down me, even if I suddenly can’t eat properly on my lunch at work
  • Salivix ‘tablets’, for my chronic dry mouth

I also find it useful to nip ‘painful situations’ in the bud before they happen, which leads me to my next point..

Tell people

I make no secret of the fact that my face hurts. I don’t always specifically tell people about my medical condition, but I make it clear where needed that I have a few little ‘extra needs’. For example, letting a server in a restaurant know that I can’t have ice in my drink, or advising work colleagues when I think opening the window will be too much for my face to handle today.

Use a baby toothbrush

For me, my pain usually falls in my mouth, on the left hand side and I find brushing my teeth super comfortable. Using a soft toothbrush on the days it’s hurting means you can at least make sure your mouth feels pretty clean before you start your day, rather than having to go without. The softest toothbrushes tend to be the ones for babies and small children, so they’re cheap to pick up and designed for soft gums and tiny teeth, so feel really gentle to use!

Make sure you still go out, if you can

I feel worse on the days where I stay in and do nothing. Even if I just get up, dressed and nip to the shop, I feel better in myself that I’ve done something ‘normal’, instead of hiding from the world at home, in my pj’s! When I first started to experience my TN, I went to work as normal, then crawled into bed at the end of the day and just slept for over 10 hours every night, but I was still working and still getting paid.. and I really appreciated that I had at the end of the month. I love going out out still! I feel like stopping in every day would be detrimental to my mental health. That being said..

Make your home (or bedroom) your ‘safe space’

This one is my very favourite tip. I do spend most of my time at home, so it’s nice to make that space your little haven. I love picking up some new cushions or a throw or spending my money on some new bits for the house. There is no better feeling than when you’re in a lovely, tidy bedroom, watching a film or doing some crafting on a made bed, with no mess to distract you!

What are your top tips for living with TN?

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Trigeminal Neuralgia

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