The Best Is Yet To Come

So I started this diet…

So I'm trying this new diet. But it wasn't my choice.

(writing this is cathartic, I won't deny I'm a bit scared about this coming week)

Some people get massages to make themselves feel better - good choice. Some people go to the gym and others just lose their temper. Me - I write.

My chronic/daily migraines returned to being really frequent and really severe a few weeks ago. My botox (2nd session) was wearing off so I went back to see my consultant neurologist yesterday for another 40 injections of the stuff in my faces, temples and crown and neck. Being pretty much confined to the house was the start of the diet - a diet of friends, of life, fun and freedom. Although I haven't really missed the sunlight (ouch). It was the kind of diet that filtered friend from acquaintances, the selfless from the self-obsessed. It made my ever-suffering chap get a bit sick of trailing around after me (carers need support too!) It made me rethink our wedding and question our guestlist. Oh and get a bit angry.

What would you do? Take more painkillers, stronger ones?

I've been reducing my painkiller intake for a while due to suffering from medicine-overuse headache (also known as rebound headache) - caused when the user takes too many painkillers - it actually makes your headaches/migraine worse and signals addiction. If you've read my blog before you may remember that I was almost hospitalised in March to be weaned off my medication and wired up to a load of drips for a few weeks - I narrowly avoided this and womaned-up, I pulled through myself with a few days off work and the support of my fiancé.

Now I take about 10 a month when before I was popping them daily (and several times daily) - nobody needs that amount of medication in their blood or brain but that's really how bad chronic migraine is. If you could live a normal life propped up on medication, you would, but I've had to be strong.

The second part of my diet started about a week ago.

I started with the most horrendously painful shooting pains up one side of my face - when eating, drinking, smiling, or the one occasion I put on a bit of make-up. It keeps me awake until the early morning. No painkiller touches it, not even dihydrocodeine (which of course I have to be super careful with because of rebound headache).I've  been having some dental work on so assumed that was the trigger.

A visit to the dentist have a good look in my mouth and a good bash at my teeth - nothing wrong with them. My issue was likely to be trigeminal neuralgia, a rare form of neuralgia and typically unlucky of me, the most painful kind. She wrote the illness name on a post-it with a drug name to give to my GP.

I saw my GP the next day who doled out the medication (carbamazepine) with little questioning. I didn't touch it though - I was seeing my neuro the next day (yesterday) so rocked up at The National Hospital of Neurology and Neurosurgery with my little prescription bag and my latest migraine diary.

One look at my migraine diary (a 1-10 number representing pain scale, 1 being practically normal, 10 being unbearable-get-to-A&E-now kind of pain). saw him confirm that botox had been helping me (this I didn't believe last time I saw him but migraine diary pretty much confirmed it). Then I told him about my dentist-doctor diagnosis of trigeminal neuralgia. He looked at me as if to say 'bollocks is it TN' but after some questions of symptoms, pain type and stuff, he said 'yep, that's trigeminal neuralgia'...

Damn. I'm REALLY gonna struggle to train for the London Marathon even more :/

Trigeminal neuralgia (TN) is a rare form of facial pain normally found in those 50 and over. This (the TN UK Association) is really good too.

I'm 32. WTF. It's incurable and can be a chronic illness (yay, another one :S). He wanted to see me again in a few days for an MRI and to see me later the same day for my results. Apparently it's one of the most painful things that can be medically-wrong with you :( The trigeminal nerve runs in your jaw, your cheek/nose and your forehead - and no, I'd never heard of this until I had it.

There's a 60% chance I'll need brain surgery - and that's the best outcome. WTF. Before this looks like a 'woe is me' post, keep reading...I'm just spouting facts for awareness.

There's a chance it could be a tumour/growth, and there's a chance there'll be no cause indicated on the MRI meaning we have to manage it with medication. TN comes, then goes away for a few months, then comes back again for another few weeks/months. I'm trying to not think about experiencing this much pain for the rest of my life, the daily migraines are bad enough. And migraine is such a goddamn boring illness to have!!!!

Today I've been drinking lukewarm coffee through a straw, and soup. Oh soup, you are epic. This is why this diet is so good - you can't really consume much without it triggering another lightning bolt in the cheek! I also had to WhatsApp my boyfriend in the same room because I couldn't talk. So he's happy the house is quieter ;)

Now, this is a whole new load of shit to deal with. My neuro isn't even bothered about my migraines atm - he administered the botox so that will control my head pain a bit better whilst we sort the TN out.

What did I do in a past life to deserve this?

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Still, there ARE people worse off than me, and instead of wallowing myself into the ground about 'why don't my friends care?' and 'why do people not just simply reach out with 'how are you feeling today?' instead of posting selfies and photos of their next meal to social applause, I am going to surround myself with people who make me happy. The people who bring out the best in me. I'm going to focus on filling my heart with love, helping those worse-off than myself, on finding new things to enjoy whilst on house arrest, do some fun wedding things from my day bed.

Some of my friends with pain and affliction are becoming my daily inspiration and I hope to become theirs. Maybe sometimes we need to hit rock-bottom to bounce back up but my sore brain will find relief and contentment away from drama and bullshit.

Last night I read a post about a headache campaigner - I always thought she was a sufferer because of the sheer determination to raise awareness. But no, her dad has cluster headaches and THAT is why she campaigns. Selfless love is beautiful and she is such an inspiration to us all. My heart was so warm after reading her story.

This morning I woke up to a photo posted on my Facebook wall from a friend with the message 'just reminding you we're here for you'. It was so sincere and thoughtful. Good friends and good family fight for each other, they share battles and raise awareness.

Some people don't know how to be with me and you know what? Neither do I. We're all learning, we didn't choose this life but we work with the cards we are dealt. By reading this, I've raised awareness of chronic migraine, trigeminal neuralgia and depression - and so have you (thank you).

The people I have met on my chronic migraine journey are the strongest I know. They are amazing, inspirational, strong and infinitely selfless. They understand this 'left-behind' feeling I have when, naturally, real life is happening for other people. But you don't have to have migraines to be a good friend to someone who has them. It also turns out that someone I know has TN too - and I'm really looking forward to growing that friendship.

Sadly I know there are people out there who scoff at my whining, who don't want to understand, and who can't see past the end of their noses about what goes on to other people. You know, the kind of people who do a bit of charity work and then post everywhere about to get a load of credit from their mates, using that to reassure themselves they are a decent human being.

That's the third part of the diet - relieving myself of fairweather folk.

If you consider yourself a friend of mine, I am grateful to you for your support, letting me bend your ear, and your friendship. Hopefully my story won't get any darker but until then, my focus is learning to dance in the rain because there's a storm going on in my nervous system.

I am not my diagnoses and there is so much more to me than this, it's time to pick myself up off the ground and show it because nobody can make me feel better apart from myself and the life I curate around me. I just might need your help to get there.

Hell, it feels better to write this all down!

Kim x

P.S. If you do Google TN you'll probably read it's called 'the suicide disease' because of the pain and its effect on life. I am not going to be one of those statistics :)

Your Backstage Pass

I'm at a festival this weekend.

My boyfriend and I have been sharing the usual happy 'look what a fab time we're having' images  sharing event feeds onto my music magazine's social media where the Welsh lack of 3G allows.

Friday night saw us watching atmospheric music darlings London Grammar and naturally as a music bod I wanted to be right near the front. I've been to countless festivals and hundreds of gigs and that, for me, is where the magic happens.

Thing is, last year I was diagnosed with chronic daily migraine. Last year we were at this very festival - Festival No. 6 - and although already diagnosed, the event was much smaller, only being in its second year.

This year, there's a huge outdoor stage instead of last year's main stage being a big circus tent, clearly word has spread about how good this festival is and the event has multiplied in size to compete with its peers. This year it's boasting headliners such as Beck and Pet Shop Boys.

But how does a girl who has a migraine most of the time do a festival?
By not enjoying it.

Friday night's London Grammar saw me at the front cursing every smoker (why do smokers think that by blowing smoke in a direction, you can't smell it?), breathing through my t-shirt then legging it back to the tent when I couldn't take my symptoms any longer.
I wanted to go home. We have disabled camping this year. I feel guilty and am clearly in denial of my condition. We're camping right by the arena and I'm exhausted. We are getting lifts from the production buggies from stage to stage. I now have viewing platform access so I can sit through shows with a bit more fresh air... And several days ago I wouldn't have believed I needed this. I am worn out. And of course because I look perfectly able-bodied I get looks and comments every time I use a disabled loo.

Last night Beck from the viewing platform was more bearable but I could still smell the weed and fag smoke, that and stage lights set off my head again. Earlier yesterday daytime something else set my brain off and Mark had to practically carry me back to our tent. Yesterday I really wanted out of here.

Today we're at Sunday. It's relaxed so far, and I need darker sunglasses but I'm still here. Exhausted, but still here.

Now I'm scared. My body is denying me things my brain tells me I should still be able to do. The accessible camping team here are amazing. Thankfully as a VIP we get decent loos and a chillout place to go to right next to the main stages. But right now I feel like I'll be exhausted for all eternity. Live music was one of the only things I looked forward to, but recent I'm struggling to enjoy or look forward to anything. ANYTHING.

Constant let-downs and always living in the shadow of the next ice-pick-in-my-head kinda does that to you. How does one, for example, look forward to their own wedding next year? How does one see friends with having a hundred back-up plans?

But here, everyone else is walking around having fun and because certain things set my migraines off big-style (smoke is a recent development in my worseners, tiredness and stress being others), people doing the things they enjoy and are indeed free to do, are the very things constantly ruining my weekend. And that's even before we've seen Pet Shop Boys.

Kx

Relationships and migraine

You might remember the guest post my fiancé wrote about living with my chronic migraine, and how he needs to be allowed to hate them even though he's never had one.

I keep reading in one of my migraine support groups about divorces, whinging husbands saying their wives sit at home all day not earning money because they have chronic migraine, and very strained relationships.

It's a reoccuring theme.

It saddens me so much to think that on top of enduring horrible daily pain in your brain, right in your very soul, where 'you' are, there are people experiencing challenging personal lives. 10% of migraineurs have said that migraine has contributed to their divorce (source: Health Union).

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Home should be a supportive environment, not one where you are belittled because of your condition, and in many cases, your disability (many people cannot work because of migraine). We just don't need the additional stress.

I found this - 'Me, My Girl and Her Migraines' - it's lovely to be reassured that there are supportive partners, that there ARE people in it for the long haul with us. That 'for better and for worse' really means that. There'll be some smiles between me and my man if that makes its way into our wedding vows when we marry next year.

I really hope those unsupportive family members are just that way due to lack of awareness, lack of knowledge and research on their part. But, if your partner has such a life-changing condition, you'd think you'd want to do all you can and know all you can to give yourself more chance of being able to help. The stress of having to provide an income for the both of you/a family can't help.

Some people will never understand, sadly, and that's partially through ignorance, or denial, that their relationship may never be what it used to be. But you can make it work, and you can live around it. You just have to embrace the changes and make the most of what you have, and who you have in your life to help you adapt.

If you have an unsupportive partner, talk to them. Educate them. Don't shout at them, they're probably frustrated enough and exhausted just like you.

Ask them to come to your appointments and meet your neurologist. Show them links you find on the internet. Share your journey with them - don't sit away from them and make them feel isolated, and make sure they get time out too. Caring for someone you love is hard work emotionally. Get your family around you as a support network to help you both out.

Make sure you have some 'you together' time too.  Even if your partner is freaking amazing with you and your condition, you still should be aware that an open dialogue is the key to making sure your relationship can bear the stress of living with chronic illness.

My fiancé and I have code words for migraines. We use the 1-10 scale where saying whispering just a number when we're out in public/with friends so he can be aware we may have to go home/be prepared. He's now aware of my aura, what my drugs are, how to give me my injections, where my medical folder it, what my symptoms are, all my doctors' names and where they practice. I fully trust he has my back and this is part of being in a relationship.

When we go to hospital I don't have to say a thing (ha, maybe partly because the receptionist now knows me and shoves me straight in a dark side room!) He can tell I'm suffering just by looking at me and would never imagine accusing me of making it up/being lazy. But that last point is why we need to continue raising awareness. We don't have headaches, we don't bum around, we are not lazy. We have a neurological illness and if your partner doesn't understand, help them to. If they don't want to understand, ask yourself if they are a hindrance to your condition.

Most of all, remember that neither of you chose this life but you will be strong together and get through it together, should you both want to. 

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I’ve started a revolution: weight training for migraine?

It's only a revolution within myself, but that's good enough for me.

Newcomers - I suffer with chronic daily migraine. I have 4-5 of the buggers a week. I've tried various medications, dietary changes. Just so you know before you read on, how much of a challenge I'm undertaking.

I signed up for the London Marathon before I was fully diagnosed. My brother was putting a ballot in and I fancied a challenge. Then I was diagnosed with chronic hell and my ballot entry didn't make it. So I applied for a charity place - The Migraine Trust have been so helpful with regards to employment law (at one point I thought I was going to lose my job - instead I had to give up my career but my employer has kept me in another role). The charity has also been great in making me feel normal and helping me deal with my current lot in life. I'm now a member of the charity's User Group, meaning I go to meetings every few months and check the charity is doing its best to represent its members and spend its money right.

I digress - I couldn't do the Marathon. I assumed I would be fixed, sorted and ready for it but every time I ran my head hurt. I did a 5k run but halfway round my migraine was so strong I struggled to walk. I ran the last bit though!! I deferred my entry to 2015 and I will do it this year whether I have to walk it, crawl it or be rolled over that finish line. To say I have done a marathon with a disability would be the  most amazing feeling.

Which is where this 'revolution' comes in.

I can't do much exercise. So yesterday I joined a gym.

My plan is to do a weight training programme to get my strength up so that hopefully within a few months when I hopefully re-introduce cardio, my body and brain will be better-prepared for the impact. Let me dispel a myth here: weight-training doesn't make you bulky nor should women do anything different to men.

I've tried so many things to alleviate my symptoms and not much has worked. The one thing I haven't tried is exercise. My neurologists both recommend it. To which I replied 'how the hell do I do any exercise with a migraine?!!?'

Well, I'm going to have to.

I need to try it. Maybe once I'm in a routine and used to it, I'll feel better. The weight gain from sitting around in pain is really getting me down. Not to mention that all the drugs I am on that can't be doing my body any good.

There are many, many benefits of a weight-training programme:  

I'm gonna put it out there - one of my targets is to look good and feel good for the office Christmas party! No shame in that!

It's going to be hard though. I'm constantly exhausted and in pain at some time every day. I am just going to have to suck it up to be honest. The first few weeks are key to creating a sense of routine for me before I start to see/feel any benefits.

I am working out a routine and my triathlete brother is going to monitor my diet. I've put workout dates with myself in my calendar - although with a migraine it's going to take some serious willpower to exercise with them. Thankfully the gym has several large spaces for training - including a quieter workout room and a ladies-only room (not bothered about working out with guys but might be less noisy). I can lift certain stuff when sat down too so perhaps a migraine-emergency routine is something I need to do, and also have a pain limit so I don't work out when I'm having, say, a 7/10 brain buggery!

I need to run this marathon. You can sponsor me here!

Not only for myself, but for the millions of migraine sufferers out there. To inspire them. To motivate them. To, most importantly, raise much-needed funds for research. There are many migraine medications out there but there is no actual cure.

My membership starts on Saturday (I want to see my return to the gym as a positive thing and going for the first time when exhausted from a day at work will only make me grumpy). I'll be sharing my progress as well as a few of my internet finds. I have started a Pinterest board here if you fancy following my discoveries.

If you see anyone trying to do deadlifts with a Migracap on, it might just be me.

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Invisible disability: let’s get some law-changing done

I am sick of walking through airports trying to avoid perfume sellers but it's hard.

They're always in some fancy open-plan design and generally unavoidable.

And that's just the pushy salespeople.

Perfumes in open-plan areas for me are a massive migraine trigger for me, and I suffer from 3-5 migraines a week. Chronic migraine is an invisible disability. In airports they're placed by entrances/exits/departure halls and in some cases you have to actually walk through them to transit - there is no way around them.

Now, if they had strobe lights, there would be a requirement for an alternative route. If they had stairs, they'd have to have a lift. But they can smell all they want. Heady cloud of non-seductive smells all congealing into one hideous mess even metres away from the retail area they should be contained in - for me a migraine, for many others an asthma attack or an allergy breakout. For any invisible disability - not cool. Who wants to go on holiday feeling like crap? Who wants to return from a business trip feeling ill?

Let's do something about it. Be it getting them in closed areas, moving them, providing an alternative route. Even if you don't find them offensive, smelling Beyoncé's latest sweat excretion while chowing down on your airport brunch can't be the nicest way to start your holiday.

Please click here to sign the online petition to get things changed - it's addressed to the UK's Department for Transport but could be a game-changer for things globally!

taking on all manner of daft challenges while living with Chronic Daily Migraine