Why I’m glad I haven’t been nominated for a ‘no make-up selfie’

Apart from the fact I'm doing the world a favour by not sharing one of these, and as much as I know that breast cancer is a huge, huge problem, I have my own agenda to support.

Seriously, though, well bloody done to those who have posted no make-up selfies, the money raised is astronomical, and just goes to demonstrate the power of social media. It's really an amazing achievement and a well-needed boost for research funding.

*quick edit to let people who don't know me know that I suffer from chronic daily migraine. I have 3-5 migraines a week of varying pain levels. I refuse to let this beat me, and take 7 kinds of medication. I had my first medical botox (40 injections, as opposed to the cosmetic 4-8) a few weeks ago*

But, migraines kill people too and frankly, nobody actually seems to give a flying f*ck. I'm a member of Chronic Migraine Awareness and last year, tragically, one of our members Melissa Dwyer committed suicide. She just couldn't take living with the pain anymore. And chronic migraine sufferers are the strongest people I have ever come across. We're a bunch of tough bitches (and blokes), let it be known.

Melissa was 22 years old. She was a beautiful, vibrant young woman whose life was just getting going, but in a post here for migraine.com, she was living a life that nobody would wish on anyone.

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Isn't she just a ray of light?

Sadly, she's not the only one of us to succumb to this fate. Migraines are a neurological disease indeed, but cause depression, loneliness, social withdrawal and so much more. Migraines ruin lives, they tear friendships apart, they ruin careers, they kill ambition, they cloud over hope - I can tell you about all of those first-hand. And this is why we NEED to raise awareness. Read about migraine and suicide here.

Like Melissa, I am super lucky and thankful to have a partner that is along for the ride. Many migraineurs don't have this, some have even lost touch with their families. Melissa had a supportive network - her mother went to every appointment, they drove across the US in search of treatment, she had tried everything and was at her wit's end.

The global medical community should have been aware. Life is precious and my heart goes out to her family - her Mum is amazing and continues to campaign for migraine awareness.

I share this to emphasise that chronic migraines (or even chronic pain in general) can be devastating and we need people to understand us. I surround myself with loving and supportive friends and family that GET IT, and ignore those that don't. People often tell me that they feel helpless and aren’t sure what to say to someone like us. Others now ignore me, avoid my gaze at work. I'm not a mental case, I have an illness, you just can't see it. Your acceptance, friendship and empathy means EVERYTHING. Love us as we are - never doubt our pain or make us feel guilty for cancelling plans. Check in on us from time-to-time (although don't call my mobile, I'm scared of the phone!) Don't get stroppy because I cancelled on you AGAIN.

Imagine dreading your birthday because chances are you will have to cancel your own birthday party.

Before anyone has a hack at me, cancer is a very serious problem, I know this. My dad, and his dad had it. There are more migraine sufferers though, about 1 in 10 people get them. They might get them once a year like I used to. Then again, their lives could suddenly be devastating by the migraines becoming chronic (more than 15 per month!) like happened to me, Melissa, and my fellow chronic sufferers.

As much as I play it down in-person, this is some serious sh*t. I'm under my 2nd neurologist, now at The National Hospital for Neurology and Neurosurgery in London. I take so many pills my liver is probably going to pack up on my next birthday. It's not a way to live, and there's not enough research done by Big Pharma because it's not going to make them enough money (although Allergan, who make botox, are doing alright now it's the ONLY treatment licensed for chronic migraine). I have spent £000s on my private treatment because if I was under the NHS, I still might not be even diagnosed. THAT would have driven me crazy.

So here is my migraine no makeup-selfie.

Taken about 3am this morning while some of you no doubt were crawling home from a bar crawl. I was supposed to be at a birthday party last night but my nerve endings had other ideas. I couldn't sleep because of the pain, which was only helped by some breathing exercises. It was one of the worst I've ever had; I was in hospital twice in December with these '11 out of 10' migraines but all they can do there is give you morphine. Which doesn't always work.

Today, the bottom two images, the house is too bright so sunnies and a cap it is...
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I'm sorry it's not the glamorous beauty shot you were expecting.

Yes my eyes are swollen and yes those are tears. I can't stop my body crying with the pain, but crying makes it hurt more. I can't really go around the office like this so I muddle on through to avoid the questions but the sunnies do make the occasional cameo.

See my interview on ITV a while back here raising awareness.

I was running the London Marathon this year but had to pull out because my condition isn't improving, BUT I have a place already saved for 2016 and will crawl the bloody thing if necessary. Please sponsor me here: http://www.justgiving.com/kimberleyruns

Thank you to those of you in my life SO who get it. You are everything to me.

If you took a make-up free selfie for cancer, or any other disease awareness, please share this too. Tell your friends. Use my name. I don't care. Get this f*cker shared.

People know cancer is a killer. What they don't know is that migraine (or any other chronic disease) is too.

Guest post – how can my boyfriend hate migraines if he’s never had one?

Hi, my name’s Mark, and I’m Kim’s fiancée. Here are my feelings on migraine typed for all to see.

They are how I feel, and a view into the opinions of someone who lives with a partner suffering from Chronic Daily Migraine. Kim kindly asked me to write a guest post, I’m certainly not as adept at writing engaging posts as she is so do bear with me until the end, I would love to hear your thoughts.

I am a carer and I hate migraines.

I view migraine with a hatred only usually reserved for the very worst of the world, I hate them with such a passion it consumes my thoughts, my hopes, dreams and my life. I wish they didn’t exist; they are a daily agony and really make life a misery.

The strange thing is, I have never had one.

My fiancée Kim suffers from Chronic Daily Migraine, something which 8 months ago we didn’t know existed. Before then it was just undiagnosed frequent migraines we knew little about. While the journey has been torturous for Kim suffering with and learning about her condition which has been growing steadily worse, I have been with her every step of the way, holding her hand, being there for her and generally becoming more of a carer than I had envisaged ever needing to be.

People tend to have a disposition towards being a carer or caree in a two-way relationship, few are totally symbiotic. Even with the best will in the world there is usually one person who more frequently offers to be the responsible designated driver, sympathetic shoulder for family or friends, or seems more inclined to put others before themselves – I believe this is perfectly natural, and relationships still balance themselves well even if certain parts weigh heavier on one, or the other. This doesn’t detract from the love, friendship or understanding either person brings, but just a result of social interaction/psychology in action.

It should be remembered too in fact, that relationships are formed not just with your other half, but we have relationships with friends, colleagues, family, and even randoms at the shops. The simplest action of turning down in-store music whilst you’re browsing can make a massive difference to someone suffering with migraine, but the relationship between the shop staff and you the customer is usually not formed enough to make this happen (Although Kurt Geiger in Guildford wins hands down in this respect following a very pleasant trip recently – thanks!)

This can put a massive strain on the relationship dynamic especially if the caree is not usually disposed to being the one always doing the cooking/cleaning/washing/picking up kids/shopping etc.

Conversely I think it can work very well, where you have the caree in the relationship as the person with the chronic condition. In this scenario the social roles fit more easily into daily life, and it’s not such a hardship to adapt to new requirements or everyday changes.

I have been with my better half for 3 and a half years. We’ve been through good and bad times, and although the waters have been choppy in places, in November last year I was thrilled to ask her to be my wife (and she said yes!)

This was apparently not something she was expecting; the pressure on our lives of Chronic Daily Migraine was so great, and her future filled with such pain, torment and uncertainty that the thought of anyone taking this on voluntarily was quite frankly unthinkable.

I hear many stories of wonderful supportive other halves/friends/colleagues, but also many where relationships break down and unhappily end. This is very sad, and for those living with a chronic condition without support I extend my thoughts and best wishes.

It takes a lot more than love for someone to turn from caree to carer in a relationship, some change their outlook on life, and change, but some will never be able to and may never be able to offer the support someone with a chronic condition needs.

Happily however, in the most part family and friends rally round and do take up the challenge of caring.

“Hold up one goddam minute! Challenge? Caree? I don’t want to be viewed as a challenge!”

No – I agree, no-one does. It really is not a nice thing to think that a condition, over which you have no choice and limited control, causes challenges and pains for other people. No-one wants to be ‘the problem’. However some of the most enlightened people, and some of the happiest Chronic Daily Migraineurs I’ve heard from, are those that have accepted changes into their lives, understood that yes, unfortunately they are a pain in the ass sometimes through no fault of their own.

It is these people I respect the most, because as someone that spends a large amount of time being a carer, it’s important for me to accept and hate it too. I’ve sat for hours in A&E with Kim, her migraine at 11 out of 10 and felt completely helpless, I’ve needed to be the rock, the support crew, the backstage manager sorting out quiet tables in restaurants and taxi driver extraordinaire with extra lifts to and from work on bad days. The look on Kim’s face when she’s in the midst of a really bad migraine will melt the heart of even the strongest person and it’s a lot to take on.

If however I’m not allowed to voice my hate of it too, what do I become? Can I be strong forever, always being the positive spin? No migraine sufferer likes migraines, so I should be allowed to hate them too. By doing this, I keep the dialog open in our relationship and understanding much better. I love caring for Kim, it means our carer/caree connection remains stable and very happy indeed.

I like the fact both Kim and I can openly hate Chronic Daily Migraine, we would be living a lie if we didn’t, and our relationship is fantastic because of it.

Many thanks for reading - Mark

Update

Hi all,

I've been absent from blogging/responding to your comments on my last post and will reply soon. We live right in the middle of one of the UK's flooded areas and were evacuated from our home last week, unsure when we can return. As you can imagine things are quite hectic and I will resume normal service soon - as you can imagine it's not helping my migraines! In the meantime, my boyfriend wrote a guest post for me last week - it will be the next post :)

Kim x

migraine1

Attention all migraineurs – it’s not all about YOU

I know sometimes we feel like chopping our heads off and flushing them down the loo.

There's no denying migraines are horrible. There's no denying they turn us into self-pitying crying messes on a Saturday night when everyone is out on the town. There's no denying we feel forgotten about because people no longer invite us to things as they know we will decline the invitation. It's enough to drive a sister crazy!

Recently, I've see a lot of people on my international migraine support group saying things like 'oh, my aunty complained of a headache, who does she think she is?' or 'my friend has a headache, oh how laughable!'

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Even the 'my sister has a migraine, ha! If only she knew what it felt like to live with one every day!' has made an appearance.

Seriously guys, who DO you think YOU are?

STOP. Stop this right now!

Just because you suffer more than others does not belittle anyone else's experience of pain. Sometimes I see migraine sufferers one-upping against each other like there are points to be scored.

Hemplegic 1 - episodic 0 - round two, ding ding!

Side note - I blog regularly about migraine to raise awareness and provide a platform for discussion, as well as to give information to the newly diagnosed - not to belittle anyone else's health.

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Sometimes your colleague might go home sick with a cold and you think to yourself 'ooh they'd never cope being me. Look at me, I have a migraine every day and I'm still here!' 

Where does this attitude get anyone? How do you expect people to support you when you are belittling their situation?

Yes YOU might feel like absolute crap, but moping about telling everyone stuff like this confirms to yourself that a) you suffer more than ANYONE else and b) just makes you a teeny bit heartless.

Stop feeling like you are the worst-off people in the world. For all you know they could be dealing with anything and haven't told you - for this very reason - that you'll just reply with one of these lines or tut at them.

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Remember back to before you were diagnosed, if you can (yay for prescriptions!) A cold, the flu, perhaps even a hangover was enough to see you bedridden for the day, or at least marooned on the sofa under a blanket. But as a migraineur, you can't always do that, life still happens and we probably won't feel better tomorrow. Bills have to be paid, children have to be taken to school and the rest. A snotty nose? Oh, that's cute.

PAH, we think migraine gives us a license to mock anyone who has a sore tummy, or asthma, or anything else. That's if they dare tell us about it.

What gives us the right to think that nobody else suffers like us? If someone is complaining about something, it matters to THEM. Whether it's your husband, your family or your colleagues. Nobody likes a mood hoover!

Everyone has their own things, their own struggles, stuff you probably don't know about because they know you'll just go one-up with 'oh well, my migraines...etc.' when for all you know they could have something much larger than 'just a headache'. How can you expect support when you don't offer it out yourself?

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You yourself know what it's like to have people not understanding, going 'oh another migraine? Have you tried avoiding chocolate?'.

How about get off the internet and go do something positive instead of wanting others to put you on some migrainey pedastal and climbing up there yourself?

Use this opportunity to educate instead of putting people in a corner, of course, once your friend/whomever is feeling a bit better.

When people feel sorry for me because of my chronic migraine diagnosis, I feel bad inside. I don't want pity. I just want people to understand. I always reply positively with something like 'it could be worse'. At the same time I am reminding myself that I CAN smile, I AM dealing with this.

And to be honest, rubbish as my situation is, it really could be worse. Get some perspective. Be grateful for your mere existence, your access to healthcare, your freedom of speech or whatever else you want to be grateful for - especially if you have some ice cream left in the freezer!

Pull yourself out of this thought process and instead, pat yourself on the back for being as strong as you are! You deserve respect, not pity.

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Sometimes it *is* impossible to see forward and get yourself out of this thinking quicksand, especially on a bad migraine day. If you're not ready to try and change your attitude, recognise why and make small steps to turn your outlook around when you have a good day.

Positive thinking often increases your personal resilience and your health.

We're not dying, we are migraineurs, and we are BETTER than this.

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