Friday, 29 January 2016

(This is one of those soul-baring posts that if I'm not careful I will spend weeks uhhming and ahhing about before I finally post it. Not today. Screw worrying! I'll post it! And worry about it afterwards). *please note this is not sensible life advice

So, I have this cool book that my friend Claire gave me a couple of years ago. It's a book of writing prompts. The other day, while my daughter played with her little toy people and I wasn't up to much, I remembered it, and started leafing through it.

Well, it definitely works for inspiration. One of the prompts just said 'What do you need to accept?'

Which got me thinking about what acceptance actually means.

I've explained the story before, so I won't go into it again. But a while ago, I was diagnosed with a chronic pain condition called trigeminal neuralgia.

In a nutshell, there is a huge nerve in your face called the trigeminal nerve. Somewhere, my trigeminal nerve is damaged, causing me a great deal of pain. When I started looking it up, the whole thing terrified me. Trigeminal neuralgia is nicknamed 'the suicide disease'. Not because it is a mental health condition, but because the levels of pain have been so severe for some people that they have ended their lives because of it.

For some people, TN goes away by itself over time. For some, it stays forever, but is managed by medication. For some, it gets progressively worse and worse.

I couldn't accept that last possibility for me. How could I? I'm still young (ish). I didn't - and still kind of don't - want to accept the fact that I have a chronic pain condition that is so awful that some people actually kill themselves because of it. Even now, when I typed the above paragraph, I had to take a deep breath to stop myself from crying.

I've always had the oblivious happiness of a healthy young person up until this point. I've never been ill-ill, if you know what I mean. I've always felt, if not invincible, somewhere close to it. Health hasn't really been a major issue for me.

And now this.

Thankfully for me, I live in the UK, and I have access to very effective medication that keeps my pain at bay, and so for a while I stopped reading about TN. I kind of lived in denial of it. But, gradually, I started to realise certain things trigger my pain - like cold, windy days. Or eating something particularly crunchy and biting into it too hard. Or Tuesdays. (That last one was a joke, thank God). I remembered that the doctor that diagnosed me originally told me I should push to see a neurologist if possible. But my own GP didn't seem too concerned as long as the medication was working.

And then around this time last year, it hit me:

I can't have another child while I take this medication.

As in, this medication might - though it is understandably nearly impossible to prove - cause defects in unborn children.

Suddenly, I had the fear of a) getting progressively more and more ill to the point where I can't function anymore, and b) not being able to have another child. And I was too scared to push it. Too scared to ask for a neurologist appointment. I was too scared of what they would say.

And thus began depression and anxiety and the occasional panic attack. For, I'd say, nine months? Before I finally got to see a neurologist. Who was kind, and sympathetic, and understood by my wobbly voice how important it was to me to be able to have another child, to provide a sibling for my daughter. He sent me for an MRI scan where I lay inside a big noisy machine and thought through the two possible outcomes. In rare cases, you can actually see where the damage is in the nerve, and in those cases, you can have a neurosurgeon cut into the back of your head (kind of behind your ear) and try and fix it. But in most cases, the scan comes back clear, in which case, they can't do much to help you.

It's not really a nice thing to choose between: brain surgery or possibly permanent pain. And I still didn't really know what I wanted when the letter dropped onto my doormat. I was shaking like a leaf when I opened it. And I saw the results. Clear.

That was one of those times in my life where I felt really angry with God. I felt betrayed. I was a hot mess for a good few days.

But eventually (and now I'm crying! Flipping heck) the neurologist got back to my GP explaining that I could take a different kind of tablet and it would be safe, in low doses, in pregnancy. And the last few months, I've been swapping from one kind to another. And it's been terrifying. I was, at least at first, almost constantly tense. Waiting for pain. Waiting for my body to tell me that, no, it couldn't cope.

It has mostly coped okay.

I still don't know what our future looks like (no, sorry, this isn't a pregnancy announcement post!) But I think I'm slowly coming round to the idea that my life now contains ... this. This pain thing. Even though I didn't ask for it (let's face it, no-one in their right mind would ask for it).

I don't think acceptance means that the problem or situation or whatever it is, no longer makes you feel any differently. Because now, on a pain-free day, thinking all this through, I'm still crying about it. I don't feel strong or brave or any other words that people sometimes like to use to describe people who feel ill a lot. I feel terrified sometimes. As in, gut-clenching fear. I'm so scared of this. And when I'm in pain, it makes me feel useless. I start to wonder what will happen in the future to my husband and my daughter, if my pain gets worse and I can't function properly. If I won't be able to be the wife and mother I want to be.

I'm really, really scared. When I look into the future I can't honestly tell myself it's going to be fine. Because it might not be.

BUT -  and this is the key thing, the thing that I hold onto on evenings when I have to go to bed and I just pray for God to get me to sleep so I don't have to feel it any more - life is more than just physical. Right? I am more than my body with its damaged nerve. And if we're really honest, no one can look into the future and say without a doubt that everything is going to be okay. I'm still alive. I'm not dying (any faster than anyone else is, anyway).

And if anything, this whole thing has taught me to love people even more. I mean, I loved my husband and my daughter before, obviously. But now, sometimes, the force with which I love them catches my breath, and I think 'no matter what happens to me, these two love me more than anything'. And the sheer strength of that alone makes me feel like I can fight to keep going even if the pain gets much much worse. The beauty of life feels really, you know, beautiful. In comparison to the pain. The pain days make me determined to make the most of every last bit of the pain-free days. And that doesn't necessarily mean that I want to go skydiving or do crazy things all the time: I just want to appreciate life.

I can't say for sure that everything's going to be okay, but I can pretty safely guess that I've got a fair few pain-free days left ahead. Which is something to be grateful for.

So no, maybe I haven't accepted it. Maybe I haven't accepted that now, my health holds me back from doing stuff I could do before. Maybe I'm not there yet. But I'm not chasing that acceptance. I'm not going to beat myself up because I'm not, you know, being a Cool Girl about this.

 'Yeah, I've got a damaged nerve right here that sometimes causes me crippling pain but it's cool, man, I'm fine.'

I'm just taking one day at a time.

And feeling extra grateful for the good things in my life.

Linking up with:

The Reading Residence


  1. I think you're doing all that you possibly can, which must be so incredibly hard. It's not OK, it's not fair that you have to have this, but I think taking one day at a time and appreciating the good and the love around you has got to be the way to go. I hope the medication continues to help and that you'll be one of the ones that it goes away for after time. Thanks for sharing with #WotW x

    1. Thank you! Really appreciate that. You're right, it's not fair, but I think the only way I can cope is by taking it day by day and trying to focus on the good bits :) x

  2. I think Jocelyn is right. Taking things by the day sounds like the best advice and looks like you're already doing it. I think whatever you're feeling right now is okay too. Accept things on your own time and in your own terms. We are all different and what may work for others may not work for us ;) Though I've only just stumbled across your blog through #wotw, sending you virtual hugs.

    1. Thank you :) for the comment and the virtual hugs! I think that's true, we have to accept things on our own terms. Otherwise it can make you feel like you're failing at dealing with your own problem! Thanks for reading x

  3. What a great post. I sometimes get asked how I accepted my boys diagnoses(ASD, ADHD, Hypermobility etc) so easily. But I think this is completely different. My boys conditions play a part in their personality, and I'm not sure when they grow up they would rather they didn't have them. I've never heard of TN, probably like most people? But I gather it is something you wish you didn't have, but have to. Sounds like you've got a great attitude. Thanks so much for sharing and lovely to find you on #wotw

    1. Thank you so much for your lovely comment :) yeah, I hadn't heard of TN before either. I suppose what makes it difficult too is that I've only had it for a couple of years and can clearly remember what life was like without it! Thanks for reading. I think you're right, a positive attitude is all you can do really to cope with the difficult times x

  4. Wow, that sounds like a hardhitting diagnosis, I think something like that would also take me a while to sink in. I suffer with HS which causes abscesses and thankfully i've taken medication which helps slows the rate down but been off them the last 6 months and a few days ago got the signs of a new one coming up - it's hard to deal with. I think in time you just resign to it don't you? I really hope that you find a way of coping through the pain and feelings xx

    1. Hi, thank you for your comment. I just Googled HS and it sounds really difficult to deal with too. I can understand how the flare-up might be making you feel. I know I find it hard to deal with sometimes when I've been pain-free for a while and then it comes back. You're right, you do just resign yourself to it. I'm hoping it will eventually become normal and won't come with all these emotional strings attached! Thanks for reading and for your kind words x

  5. I'd never heard of TN before until I read your post and I can imagine how scary that it must be to receive a diagnosis like that. I hope that your new medication will continue to work well for you and that you will be able to have another child without the pain getting any worse for you. I am sure it is all very scary and awful at times though and even though you say that you haven't yet accepted it, your approach to taking things one day at a time sounds like a good way forward x

    1. I suppose it was scary looking back on it but to be honest it all felt a bit surreal. And initially, to find a relief from the pain kept driving me forward. It was only afterwards that it started to sink in. Thanks so much for reading and for the comment x

  6. Wow what a thing to have to accept. My best friend was diagnosed with a brain condition recently where again she had to choose between medication, in her case to stop her going blind (and worse) , a series of brain surgeries or medication meaning she couldn't have another child. So I understand a little how awful the decisions must be for you. Thank goodness the new medication is working for you and I hope you have many pain free days to come xx

  7. Wow what a thing to have to accept. My best friend was diagnosed with a brain condition recently where again she had to choose between medication, in her case to stop her going blind (and worse) , a series of brain surgeries or medication meaning she couldn't have another child. So I understand a little how awful the decisions must be for you. Thank goodness the new medication is working for you and I hope you have many pain free days to come xx

    1. Wow, your poor friend! I cannot imagine being in the position of having to choose between surgery, another child or going blind. Really hope that life is kind to her this year and that she feels peace with whatever decision she makes. Thanks so much for reading and your well wishes x


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