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