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A day in the life of me

What is it actually like to live with chronic migraine? Don't you just hurt every-so-often or something?

Migraine, migraine, migraine. Bore off. Doesn't Kim have anything else to talk about?

Well actually, I do but migraine affects so many aspects of my life that I feel a massive need for awareness and a need to speak out. I hear that "it's not as serious as cancer" or "cancer isn't always cured" or "at least you have all your limbs" (actually it's usually me saying the latter to brush-off my condition). But my Dad had terminal cancer, heart problems, severe diabetes and strokes so I will never, ever, buy that line. It massively offends me. Read why on migraine.com - although the article omits the suicide rates. Here's something on depression and migraine though.

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The cancer survival rate is always on the up, and it's no longer a death sentence to have it. Never judge what you don't understand and never talk down someone's illness because if they're suffering, it matters to them.

Chronic migraine is, according to the WHO, the 12th most disabling condition in the world.

I don't think people understand the magnitude of living in the shadow of chronic migraine, or other chronic illness. Or that migraineurs have a suicide rate. We don't look ill, we look for the most part completely normal. There's no cure and few people take notice of the charities funding research fellows desperate to help improve the quality of our lives.

So I've written a pretty average day for me that goes beyond the physical pain of daily migraines that you see when I'm in sunglasses or squinting or covering my head to help raise awareness.

Things I have to think about and things I come across that can make me pretty ill, and I've been careful to not exaggerate anything. This is a pretty accurate example - please consider how you live your daily life in comparison to mine - not for sympathy, but for awareness of chronic migraine that so many of us sadly live with day in, day out.

8am: wake up to alarm (argh, noise). Take some lamotrigine to help keep my TN (trigeminal neuralgia aka suicide disease) at bay. Wake up and think 'am I hurting or am I not hurting?' whilst coming around. I might (this is getting rarer) have a bit of a tearful chat with Mark about how much chronic migraine controls my life and how depressing it is - say for example I plan a very rare night of meeting a friend after work, I won't know if I'll be able to make it until an hour or two before. If it's the weekend and I sleep in for too long, that's also guaranteed to give me a migraine. And if I ever find life too much and cry about it - guess what: migraine trigger always giving me a really throbby painful one.

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I always remind myself how lucky I am to still be working whilst I suffer with chronic migraine. Many, so many people have lost jobs or quit jobs or had to medically retire because of chronic migraine and other conditions. It puts people in wheelchairs and makes people end their own lives, and I've read of many that have considered it (not me. I've lost my career to it, but I still have a job which I am very thankful for). Still think it's not a serious illness?

8.10am: Shower. If I'm having a good day I'll wash my hair. If I've woken up with head pain I'll use dry shampoo. I need to conserve energy to get me through the day so usually wear my hair up as it's lower-maintenance. I can't wear my hair up too tight though as it could trigger a migraine, or make my symptoms worse. Sometimes simply brushing my hair hurts, or using hair grips can really hurt too.

8.45am: Feed the piglets! We have two guinea pigs and seeing them on a morning always improves my mood. More on these two later. Did you know that migraine service dogs are a thing? If Mark's kindly made me a wake-up coffee to kickstart my drowsy druggy head, I'll neck it before we leave. Caffeine also makes my medication work faster, I think.

9am: leave for work. If it's sunny, whack on my sunglasses before leaving the house. If it's cold, wrap up - cold wind can make a migraine decide to happen. I used to do a 2-hour commute EACH WAY because I'm not allowed to drive.  The commute takes me via an airport where I change buses but people smoke RIGHT OUTSIDE the doors ignoring the signs asking them not to, and I can smell the airside duty-free area from outside the door too. It can give me a migraine on my way to work. Thankfully it's only 20 minutes in the car and if my boyfriend is working from home that day, he'll kindly give me a lift to the office so I have a better chance of a lower-pain day

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If I get the bus and feel bad, asking for a seat can result in an argument so I never do it. I'm classed as disabled because of my condition and always give my seat to the infirm and pregnant but I get 'you don't look disabled' which usually hears me reply with 'you don't look like you have a medical degree'. So I'll stand and feel dizzy and sick and hurty whilst someone or their handbag gets to journey in comfort. Don't get me wrong, they could be invisibly ill too but getting defensive about it? Pathetic.

I do my make-up in the car as it gives me extra time in bed on a morning. Turns out I do mascara better at speeds than when stationary and I've learned to adapt my make-up to make my botox (one of my migraine treatments!) look a bit less weird (I don't get to choose where it goes so have flat eyebrows and hidden eyelids).

Sometimes I really cannot summon the energy for effort but somehow masking my face feels like I am masking my condition, it's like wearing a costume to give you confidence to face the day without everyone asking my why I look like complete crap.

9.30am: arrive at work. I start work at 10am (instead of 9am) because my night tablets can make me drowsy and I really need my sleep to recharge my batteries.

Walking through the security gate, every single working day I am met with a terrible smell - probably something I didn't notice pre-migraine. It's the smell of perfume and aftershave coagulating with coffee. Of course it's the morning so everyone has gotten ready, made themselves smell nice, and they are desensitised to it. Unfortunately migraineurs are sensitive to noise and sound so can probably smell it when you're nowhere near.

I work on a lower floor to the entrance, it's only 1 floor down so I although I could take the stairs, I often avoid them. They're spiral stairs so going down them makes me dizzy and disoriented, and the lift is also useful if I'm completely exhausted - after migraine there's a phase called postdrome, which is when your body is exhausted from pain and brain activity, and it makes you really lethargic.

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9.35am: take laptop from my locker (we smartdesk) and find a place to sit near my team - they're a lovely bunch but I have to be careful where I sit because of perfume and that kinda thing. Sadly there's only 1 place usually free - if I'm feeling particularly bad I'll go into a quiet booth (if there's even one available) or work from a meeting room. The booths are bright orange and the meeting rooms are lime green so there's no escaping triggers - they can be quite harsh on my eyes so I'll wear my sunglasses. I buy some porridge. Then I head to a morning meeting.

10.30am: return to my working area after meeting. I use an app called Fl.ux on my laptop to add a delicate orange hue to the screen that's less harsh on my eyes, and have the brightness turned right down - so much so that when someone comes to look at my screen they can't even read it at all, but I guess I've gotten used to it.

Sometimes when I have a migraine I can't talk properly, not can I understand what people are saying - so I'm quite quiet at work when not feeling great as that could be really embarrassing. Thankfully this hasn't happened at work yet!

10.35am: coffee! I'm really thankful that coffee isn't a trigger for me - in fact, no food or drink is (yay beer), so I'll treat myself to a coffee from the café. This means queuing with people that could potentially be wearing strong scents, or shouting over the coffee grinder noise. Of course this is nobody's fault so I don't let it get me down. I might get some 'ice picks' which are random painful stabs on the top of my head - sometimes after seeing some funky dots (more on those later) but thankfully they only last a few seconds).

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11am: toilet break. The office toilets have really annoyingly strong air fresheners, that sometimes trigger me. I've asked Facilities to remove them, and they did for a bit (in my working area) but then my team moved to another part of the office and I can't be bothered with the faff of asking again.

Midday: lunch. I could eat at 1pm to make my daytime more even (I finish at 6pm) but I'm always hungry at this point and when I don't eat regularly, I get a migraine - guaranteed. I usually eat at my desk and read the news online or check in on the Facebook migraine support groups I'm a member of - this means a) some quiet time whilst everyone else is on their break too, b) also avoiding the main eating area that could trigger something nasty and c) reminds me that I'm not alone with this condition. If something's bothering me I'll get it off my chest in a secret group, or try reassure someone having a bad pain day. It's such a relief having friends that understand - my boyfriend, has much as he tries, won't fully understand my situation because he's not living it. He comes to all my medical appointments and helps whenever he can with other things but without the pain, the motor issues and feeling the stigma, he will never fully get it. Not even episodic migraineurs understand but they can empathise more than most.

12.45pm: I recommence work. Everyone is back at their desks and some people have resprayed their scents in the bathroom to freshen up for the afternoon. Which is a normal thing to do of course, it just means that I'm worrying about the effect it could have on my head. I probably forget what I was doing so spend time remembering, or ask a colleague (again) if my solution idea is correct. They're sick of me repeating my questions I'm sure.

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1pm: I start seeing blurry dots whilst going through my emails, and some electric blue pinpricks. My right hand feels a bit weak and I give it a shake to get some life into it. This is what is known as a migraine aura. Some people see dots and lines (visual disturbance), some people go weak, and get tired. Some people have no aura at all and my latest aura kind is seeing things vibrate. Sometimes I get an aura and then no migraine pain following it. It's very weird! Anyway, I now know I can expect a migraine within the next hour...here we go. I have to be prepared for migraine-onset at all times so in my handbag migraine kit I carry 5 different medications, antiseptic wipes, numbing gel, earplus and sunglasses. Right now at work, I have four options:

-I can take 1g  (2 x 500mg) paracetamol
-I can take a triptan cocktail (frovatriptan, with naproxen and domperidone) Frovatriptan is from the triptan family of medicines used to stop the onset of a migraine, naproxen is an anti-inflammatory to reduce brain/vessel swelling and can also reduce migraine aura, and domperidone is an anti-sickness medicine)
-I can give myself an injection of sumitriptan - another triptan that's really effective when directly delivered into the bloodstream. It absolutely kills and I have to vanish from my desk for 15-30 minutes as they make me really faint and dizzy - I've had to walk out of meetings to use these then get some very strange looks when I return looking all spaced-out!
-or, I can do nothing. I can wait for it to start hurting, and take nothing to stop it.

Why would I do this? Because I'm only supposed to take a maximum of 10 drugs a month - so 10 of the above combinations, which sucks because I have this occur most days, and sometimes several times a day.

Before I knew this, I used to take 6x500mg paracetamols a day, triptans every day, inject 6 times a month, and think I was doing myself the world of good. However, then I switched to a specific chronic migraine neurologist he informed me that I had medicine-overuse headache (also known as rebound headache) and was risking making my head pain worse as well as having a painkiller addiction.

I was almost hospitalised for it, but instead of being on a load of drips in a noisy hospital ward I weaned myself off them at home. I bet you don't know about this part of migraine life, but sadly most of us sufferers have this problem. I very rarely go home sick (I think I've only done it once - I feel too guilty and its embarrassing packing up my stuff and leaving the office with my tail between my legs).

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If I take a triptan or triptan injection I can expect to feel it working within 30 minutes. If I don't take them, I just woman-up and fight through the rest of the day with a pounding head in an office that has fluorescent lighting, perfumed toilets and is open-plan. I'll go outside for some fresh air. I could go use a quiet meeting room or a booth (if any are free) or, as HR advised, use the Multi-faith Room - a stupid idea as I'll be interrupting someone or they'll be interrupting me. But my team are supposed to all sit together so I don't move. I whack my headphones and listen to some classical movie soundtracks or meditation music to distract and calm me.

I'll log my migraine into my Migraine Buddy phone app (which I cannot recommend enough) and leave the log unfinished so when the pain subsides I can see how many hours it lasted. I'll also drink water in case dehydration was the migraine cause, but to be honest absolutely nothing can set them off too. It's a brain problem with no cure and not fully understood. I continue with my work.

2.30pm: my final coffee of the day. In the kitchen area I might see someone I know from another team or department who will ask how I am. I don't make a big deal of my condition and not a lot of my colleagues know about it (I don't want to have to debunk everyone's stereotypes) but if this colleague does, I'll say that I'm doing okay and botox has really helped. Some suggest that I really shouldn't be drinking coffee or have I seen that migraine smoothie, or have I tried accupuncture. Of course, I don't want to make them feel  bad for trying to be helpful and caring - so I explain that I have no dietary triggers and yes I've tried no alcohol/no coffee/no cheese/gluten-free/lactose-free/low-gi to be sure of it.

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The migraine smoothie image is rubbish and yes I've seen it a million times. And I'm thinking 'do you think I've lived with this condition for 18 months, am having 40 injections in my head every 3 months, and I haven't tried anything?' but of course never say that to anyone because they want to help.

And accupuncture didn't work - but I will always ALWAYS thank them and never shoot them down. They're saying it because they care and want to help me get better, which is really kind of them and makes them a good person. Poo-pooing their efforts is really not a nice thing to do and instead it's my opportunity to raise some awareness. I might explain botox to them. People care and there's nothing wrong with that, even though most folk don't understand there is no cure for this, it's not going away. It should happen more.

3pm: I have the odd afternoon meeting which usually sees me not starting at projectors for long because of their brightness. It also means going past a load of desks to get to the meeting rooms meaning - guess what - perfume triggers and bright lights. Sometimes I'll take my sunglasses, just in case.

Here's a story for you: when I first moved to this office, I'd only been properly diagnosed about 6 months before so was trying all kinds of drug treatments and hadn't had the botox yet. I was in pain pretty much all the time and spend my day squinting, so I thought 'sod it, I don't care what anyone says, they don't have to live in my body' and wore my sunglasses everywhere. They're fun and big and red. A colleague (who understands) told me that one day, someone asked her something like 'who does she think she is, walking around all day in her sunglasses?' meaning me. My friend/colleague replied 'she suffers from really debilitating migraines a lot of the time', and the accuser apologised, feeling bad for not realising or even thinking I had a health condition and wasn't just being dramatic or something.

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People can think what they want - I have plenty of other things to worry about - and I'm really glad this colleague of mine put gossip to bed.

4pm: I text my friend and cancel my dinner plans. I'm exhausted and hurting. I feel terrible being so flaky but what can I do? Getting into Central London is a pain - it's stressful (migraine trigger), it's going to be at rush hour (standing on crowded train so no seat, and surrounded with people also going out after work doused in reapplied scents: trigger). I'll also be home around 11pm meaning I will be really tired for the next day so I decide sadly that it's not a good idea. They're understanding and fine with it - wishing me to feel better soon - but I feel terrible for the short notice as they could have made alternative arrangements. I text my boyfriend and let him know I'm not going to see my friend, and ask for a lift home, feeling like a burden to him and my friends. Then I have a word with myself, have a snack, and carry on working.

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5.30pm: If I got to work early I'll leave now. If I'm busy I'll stay until 6pm.

6pm: My boyfriend will collect me from work and drive me home. He'll be all excited to see me and tell me about his day - and to hear about mine. But sadly, more often than not he'll look at me and recognise I'm not feeling great, and turn the radio down and we'll drive home in silence. Or, I'll simply be too exhausted and try to explain kindly that I really need some quiet and we can talk a bit later on. It's a horrible thing to have to do and I'm lucky he understands because who wants to work at home all day not seeing anyone, then pick his girlfriend up from work (to save her 2 hours on buses) and then have her tell him that she really can't handle a conversation right now. How is he not supposed to take that to heart?

It makes me feel terrible.

6.30pm: Supermarket. I hope we park near the shop entrance as I'm way to tired to entertain a schlep across the car park. We pop in on the way home to get something for dinner. I usually wear my sunglasses for this and usually let my boyfriend decide on what we'll eat (depending on what kind of pain day I'm having) as I'm so exhausted from work. We'll usually encounter a screamy child/perfume offender/strange looks at my specs but none of these can be helped and we'll make a joke of it.

If it's dark outside when we drive home I'll keep my sunglasses on and look at my knees or something - car headlights really hurt my eyes and can cause head pain.

7pm: we're arriving home. I'll shove my handbag somewhere and collapse on the sofa absolutely worn out. Chronic illness doesn't look like anything but it's not just about actually hurting. It's exhausting, repetitive and gets you down, and when you're feeling low AND feeling very tired, you can feel really sorry for yourself. When you're not in pain you're either recovering from it, or dreading another onset and it's a terrible cycle, made worse knowing you can never leave it.

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My boyfriend will cook dinner (I'd never get my head around making a meal after a work day) and he might suggest I 'kill some bast*rds' which is our code for having a go on the Playstation to distract myself and help me relax. If my TN is flaring up it will be a soft meal, ideally soup so I can drink it through a straw. True story.

While he's cooking, I do one of my favourite things EVER - I'll bring our guinea pigs into the living room for fur cuddles and a run around. I find my pets so relaxing to watch and be with - and they're very good listeners. Animals teach us so much without us realising and they are guaranteed to cheer me up - they should be on the NHS!

8pm: dinnertime! Mark is an amazing cook (read his food blog Smokebark here) and I'm super lucky to get something quirky and yummy most evenings.

8.30pm: if I'm up to it, I'll log onto my music website (www.neverenoughnotes.co.uk) and see what my staff are up to/check my emails. I'm not able to do this too often as my priority is to get through my day job, and I'm lucky to have recruited staff to help me run it and write content. When I have more control over my health, I'll get more involved again. If I don't do this, we'll watch a film or I'll read the news or something. I can't go out very often (in fact I never go out on workdays because I am just too exhausted), so I can't go to gigs and see bands/festivals which was one of the key reasons I founded my online magazine. One day I'll get back to that again.

10.30pm: I'll start winding down for bed and always aim for 11pm. I feed the guinea pigs some fresh veg and their silly happy little faces cheers me up again. I'll take my evening meds - dosulepin and more lamotrigine, and a multivitamin. I'll whack in my earplugs for guaranteed sleep. If my TN is playing up I can only sleep on one side of my face, and if I have a migraine I'll read some articles in bed until it eases - I very rarely take a triptan/migraine injection/painkiller when at home as I save them all for work. Pain at evenings or weekends just has to be put up with - even the hospital-sized migraines. I spend most of my time resting to be well enough to go to work but that's the way the cookie crumbles right now. Things WILL improve.

11pm: I close my eyes. I see a kaleidoscope of colour, flashing lights and weird patterns. It's a weird migraine aura and sometimes closing my eyes is brighter and more distracting than having them open. Sigh, guess I'll wake up with a migraine then. Goodnight.

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When I don't have a full-on migraine I usually have some kind of low-level head pain and fatigue. Annoying or what!

Please also remember that many chronic migraine sufferers have comorbidities - other conditions too such as chronic fatigue, firomyalgia, diabetes, allergies to migraine medicine, vertigo, and remember that migraine is a spectrum condition including hemiplegic migraines (that mimic strokes) and basilar migraine.

I have chronic migraine with aura (this is classified by 15+ migraines a month but I have at least 20), and trigeminal neuralgia (not normal neuralgia) which you can read about by clicking here. There is no cure for either of them.

And I'm off for a lie-down to give my head a rest now.

Please hit the 'like' button and share this for awareness, and to help your friends and family understand.

Do you suffer with migraines - chronic or not - or another chronic illness? Or did you read this to understand what it's like? Did you learn anything new by reading this? I look forward to your comments.

Kim x

The Migraine Project

You need to see this Kickstarter project

Hello!

Today my attention was drawn to a very important project. It's absolutely essential that this Kickstarter reaches its funding threshold. Why?

Because it's about migraine. Rolling your eyes?

Do you want to do that in front of millions upon millions of people who suffer with migraines? Did you know that hemiplegic migraine gives you paralysis? Did you know that migraineurs are much more likely to have strokes? Some people have a few migraines a year, and some (like me) have them daily. The periodic ones are JUST AS IMPORTANT as the daily ones - there is no cure and they're hugely debilitating.

They ruin careers, families, marriages and childhoods. They cause poverty, depression and suicide. Are you still rolling your eyes?

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If you don't suffer from migraines, remember this: you've never too old to have your first one.

See this project's promotional video here:

See it on kickstarter.com and pledge to support here.

This project needs to happen. Not just for me, but for MILLIONS of people out there living with this life-changing incurable illness.

Please consider pledging - even if it's just $5 (£3).

If every single one of my Facebook friends donated $5 to this documentary project, we'd have $1650 to contribute.

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).

migraine

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. 

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