Category Archives: issues

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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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!

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A long-overdue apology

I really p*ssed off a lot of migraineurs a while ago, and I meant to do another post to explain myself.

Since then, we've been flooded out of our home for 3 weeks (we're back now but many of our neighbours cannot come home for months), I've been trying to get a grasp on my music business (as well as my day job) and a load of other stuff. Like selling a house, buying another, and organising two weddings.

Anyhoo, no time like the present. I have never forgotten about this response but after a healthy discussion in a support group last night that unfortunately led to the original poster being practically bullied (not by me!) I thought it a good time to raise this again.

The post in question is this: ATTENTION ALL MIGRAINEURS – IT’S NOT ALL ABOUT YOU.

It wasn't meant to upset anyone, I'm really not that kind of person. It did go on to be a bit of a migraine-brain rant. Okay, a very ranty-rant. I'm a brash Yorkshire lass, but I'm by no means any kind of bitch. I apologise if anyone was hurt.

In one of my migraine support groups, there are frequent postings of 'OMG XYZ said they have a migraine. If they really had a migraine (which I know they don't get) they wouldn't be doing XYZ stuff'.

I can see how it can p*ss a sister off, but how do you know they aren't suffering, no matter how insignificant?

Who are we to judge? Who are we to try and understand the level of someone else's pain? It is all relative, and if they are in pain, they are in pain, no matter how much it compares to yours. It reminds of the whole 'oh you don't look ill' we so often get. We don't know what's going on behind that post on Facebook, that 160-character tweet.

I, for one, have varying levels of migraine - I try maintain a full-time job with low-level background pain, dose up on my meds and try and carry on. Some days I simply cannot. Other sufferers I know don't often leave their beds. Every one of us is different and only THEY know how they suffer. As do you. As if that's not enough, there are so many kinds of migraines. Some without head pain, some people have no aura, some people are completely au fait with light and sound. Others have stroke-like symptoms. It's horrible seeing the people I have come to know through migraine going through this :(

Not only that, but my chronic illness came out of nowhere. What's to say that they aren't experiencing the same? It's like me trying to say that something hurts as much as childbirth when I've never had a child. I just can't relate. This goes for loads of life situations, never mind just migraines of the chronic variety.

If nothing else, remind yourself how resilient you have become. Be proud of your awareness-raising. Amaze yourself with how strong you are when your brain feels like it's been shoved in a wood chipper while someone is tasering your eyes with chilli sauce.

I hope this explains my previous post better. I consider myself a very lucky sufferer: I am still able to work most of the time, I do not have children that rely on me, I have a very supportive partner but still, we all know how lonely a chronic illness can be, I'd expect us to be best-placed to try and empathise with others who are experiencing pain.

Unless it's a man joking about period pain. That is a whole new blog post ;)

As for the poster yesterday - it was a good discussion and I was sad to see the post go downhill. I hope you're okay today. My support network isn't great in real life, and it was a shame to see people tearing each other apart instead of pulling together...the people I have met through CMA and other migraine groups have been invaluable to me.

Let's keep the discussions ongoing and welcome our friends into the community if they should also sadly become chronic migraine sufferers.

Kim x

Developments, and not in a good way

Last night I went to see Dr Manjit Matharu at The National Hospital for Neurology and Neurosurgery.

My current specialist could help me no further and sent me to see Dr. Matharu in central London.

Yes, I battled with a tube strike to get across London. An hour's journey to the hospital took 3 hours and an up-to-the-minute movement status feed from the no. 7 bus to my boyfriend. Eventually I hailed a taxi which was very lucky, he also was stuck in the traffic but £25 later and driving through a film scene complete with Pierce Brosnan, I arrived at the hospital only 30 minutes late.

Thankfully the doctor was also running late and understood the lack-of-transport/hundreds of people at each bus stop situation and waited for me.

At 9.15pm I emerged, confused, bewildered and very crestfallen.

See, I use private doctors through an excellent healthcare plan provided through my employer. Back in June, I asked my GP to refer me to a neurologist and it was a 4-month wait, so I ended up using the health insurance and regularly seeing Dr Michael Gross at the BMI Clementine Churchill in Harrow, north west London. I have been under Dr. Gross since, until last week actually. He wanted to refer me for botox but I'd have to see another specialist so there I was, exhausted, running into the hospital like my arse was on fire.

I went in, did the whole history of everything while the doctor made pages of notes. He's a specialist in chronic migraine, his mother is a sufferer and he himself gets migraine occasionally. He reassured me that he understood, that I may not look ill but unfortunately I am, that I feel like I'm wading through quicksand as I take every single day slowly, as it comes. That my social life has dwindled and nobody even just asks 'how are you?' these days apart from a select few.

And now I have several options. I won't go into detail because I'm pretty sure someone on my Facebook or at work enjoys discussing my every move with management which is just bloody rude. I blog to raise awareness, not to be pointed at and laughed at.

To be honest, if you are friend enough (or just a decent human being) you can ask me and I'll happily discuss. I will certainly go into more details later when things are confirmed in a week or so. My migraine support group (the migraine circle of trust) were amazing last night and finally I am getting somewhere, but not anytime soon.

Basically, I have to go through a very difficult period for a few months before things can improve. 

I also have been accepted for botox treatment for my migraines. But my insurer will only cover 1 session. You need at least 2 to see any benefit, and then I may have to have it every 3 months for years.

So I went to see my GP this morning to get referred back to The National Hospital of Neurology and Neurosurgery, as an NHS patient. It's at least a 6 month waiting list just to be seen, and then a longer wait for the botox treatment.

So going to the GP apart from discussing the Top Secret Period of Hell Times Infinity (TSPHTI), the plan is to wait to be seen an NHS doctor while trying out this botox. By the time I need it again, I'll either have to pay a few hundred quid or be nearing an appointment with an NHS doctor.

By the end of next week I will know much more about what comes next. Still, I finally feel like I'm getting somewhere although it's likely I will have this condition for the rest of my life, one thing I need to accept. We just need to learn to live with it and manage it.

On a slightly different note, there's the ongoing theme of migraine as an invisible illness (well, as invisible as you can be wearing full-cover sunglasses in the office).

After my tube strike/massive neurology appointment that brought up a big mental signpost, I had to schlep home to Surrey. The buses were almost back to normal, then I just had to get a train.

I jumped onto one of those carriages with a loo on and less seating expecting a quite ride home. Alas no, there were 4 people having a bit of a laugh, a bit loud, but it was harmless, they were a bit squiffy and having fun. It's impossible to avoid things like this but maybe I should make a video of my typical day, my stressors, triggers and general ways I have to adapt if anyone thinks this would be good to raise awareness.

Anyway they started singing, then playing music from their phone (they were mid-30s not kids btw) and then whistling. OMG, whistling makes my head rattle. The racket was well above what was polite/tolerable so I kindly asked if they could keep it down:

Me: "Hey would you mind keeping it a bit quieter? I have a migraine.."

Twat no 1:" Ha, I've not even started yet."

Me: "Please..."

Twat no 1: "HAHAHAHAHAHHA" followed by Twats 2, 3, and 4 joining in with general laughing and pointing..."who do you think you are?"

Me: *goes over to their seat, shouts* "IF YOU HAD A MIGRAINE EVERY SINGLE F*CKING DAY OF YOUR LIFE YOU'D BE A LITTLE BIT GRUMPY TOO"...then stormed 3 carriages away and had a bit of a sob, praying they didn't get off at my stop.

This is on top of someone whistling loudly right next to me on the bus earlier - singing very loud, wanting everyone to look at him. Asked if he minded not doing it. He apologised, then carried on!!! When I look at him asking "really!?" he winked at me, the git. He did stop after that though.

Why are people so fricken horrible? I experience stuff like this pretty much every day of my life.

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12 things to not say to a chronic migraineur, but 10 things you should

Migraine.com published a list of 12 things to not say to a chronic migraineur. Very good, I thought, but what about a more positive spin? Things people can do to HELP you, to make your life easier, to keep your spirits up and to remind you that you have a support network.

The internet is full of 'what not to say' and 'what not to do' - that's not very helpful! I had a bit of an epiphany last night where I realised I had reached rock-bottom. I don't talk about my migraines anywhere else but here on my blog really, I don't bring up bad things about me to anyone, I don't want to put a dampener on anyone, and everyone has their own personal struggles.

But this past week has really tested me. On top of the whole 'wearing sunglasses in the office daily' thing and not being invited to various social gatherings, being forgotten about, I have felt my situation belittled. Normally I put other people before me and my situation - no matter how little, if it matters to a friend, it matters to me - but less and less I find my friends doing the same for me.

It really hurt. Yesterday evening I felt at the end of my tether. 

Then I realised, people don't know what to do. Either that, or they're really not worthy of having me and my stupid health burden in their life.

Perhaps, they don't know how to be, or what to say. I could write yet another list of 'what not to say to a migraineur' or post some photo quote intentioning how I feel, but instead inspired by migraine.com's article, I've decided to take action in a more useful and positive way. At least I can turn chronic daily migraine into something useful for my fellow sufferers.

Here are 10 simple things you can say to remind your migraineur relative/partner/friend/colleague that you are there for them, even if you don't understand what they're going through.

1. "How are you?"
A very simple text message can go so much farther than you think, but mean it. You may not have heard from your friend for a while, they might take days to reply to your texts, but it doesn't mean they're not talking to you. Our lives are for the most-part, very simple and reduced from what they used to be, so you might want to tone down how much fun you're having right now, but it's so so lovely to know you are thinking of us and care. We don't mean to ignore people or take ages to get back to you but when getting out of bed is one of many struggles we face daily you have to cut us some slack. You may have some stuff going on too, but if you can put it aside, just to send us a sweet little message, you are a true friend to a migraineur!

For extra points you might think about a phone call, but that may make the migraineur worse (like me). Noise right next to ears is a huge no-no for some of us.

2. "Shall we have a quiet night in at your place curled up gossiping and watching crap films?"
I am, at the moment, terrified of bars on a Saturday night - noise, navigating drunk people, public transport - a sensory overload, and plenty of others are in this position too. So I find myself staying in during weekends. It gets lonely, someone coming into my world willingly would really cheer me up. Invite yourself over! We assume you don't want to come because we're not exactly a barrel of laughs, we're probably a bit depressed too. If your migraineur friend was in hospital you'd want to visit, so why not visit their home and bring the (quietish) party with you? It's cheaper too!

3. "Sorry for shouting, I forget I do that when I have conference calls at my desk."
You may not know you work with a migraineur, but if you do, we know you don't realise how sensitive we are. I find myself moving to work in quiet rooms and lonely spaces to avoid people laughing and holding loud telephone calls - the people making the noise don't realise, it's not ignorance in the slightest but it takes a lot of courage for a migraineur to talk about their condition for fear of offending someone even though it affects their health.

4. "Would you like me to come to a medical appointment with you?"
This isn't so appropriate for me, but I know other suffers would really appreciate the support. This isn't just for migraineurs - if you have any friend dealing with something alone, be a friend and let them know you are supporting them.

5. "Tell me about your migraines."
The image above is how we chronic migraineurs think we are viewed. We're broken records, only talking to our migraine support group buddies because they get it like nobody else does. Knowledge is power, it has been said. If someone - say my boss, a friend, a family member - wanted to know more about this, I would feel very touched and I'm sure I'm not the only one. It's not that people don't care about us, they don't understand us or how to be. Breaking that cycle makes things better for everyone!

6. "I hope you get to the bottom of it."
A simple message of support - no "have you tried...?". Believe me, we probably have tried most things, but a smile and supportive well-wish would be most welcome. It's such a nice alternative to "take a pill" or "you should try..."

7. "Would you like to come to ...X?"
We cancel so much that people don't invite us to things anymore. But chronic migraine does have its good days, or indeed sometimes we will cope because leaving our comfort zone is worth the pain. Daytime stuff is usually better, but even if you expect us to say 'no', it's the gesture that makes us feel remembered, and you may be pleasantly surprised - I, for one, have a mostly background migraine all the time and use these better days as much as I can. Perhaps you and your migraineur friend can come up with alternatives to find something you could do together socially.

8. "Can I help you with shopping/take the kids for a few hours/etc.?"
Life is one of migraine's biggest enemies. We need sustenance and going to the supermarket can bring up all kinds of problems: you have to get there, you have to navigate a fluorescent-lit warehouse full of noisy people, children, crowds and queuing - and that's after you've schlepped around and found everything, and also remembered everything you went for. I don't have children but maybe your migraineur friend does and would appreciate an hour's sleep, knowing their child was having fun, were safe, and weren't seeing your suffer.

9. "I miss you."
Life kinda leaves people like us behind, we see our friends less and go into ourselves because we know we're not the hellraisers we used to be. But we're still the same people, we can laugh and love and cry just like we used to. Rekindle that friendship that used to revolve around partying and turn it into something new. Why should you be the one to make the first move? Your migraineur's self-confidence is rock-bottom and their entire life has changed, they may assume you don't care. Make sure that you don't make your migraineur feel bad for going off the radar - they're on a journey you hopefully won't experience yourself so don't belittle it. Instead, move forward together.

10." Is there anything I can read or do to better understand?"
Perhaps you and your migraineur could go through their medications together, or they could send you some internet links, like this one I wrote about my personal migraine experience. Some other useful ones are migraine.com, Chronic Migraine Awareness, or you could request to join this open Facebook group aimed at raising awareness of migraines.  There's a world of information on Google that's not all boring sciency stuff. Take five minutes to have a coffee, sit down, and understand. Knowing that you are on their side in battle will mean the world to them.

If you know a migraineur, no matter their relationship to you, why not do one of the above things, right now? Make somebody's day.

Do you agree? What else could people say to support you and help you better?

One of my upcoming blog posts will be from my fiancé Mark, who is keen to share his experience of living with me and my migraines and how it has affected our lives, and will impact on our future.

Read '12 Things You Shouldn't Say To A Chronic Migraineur' on Migraine.com here.