Tag Archives: chronic migraine

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!

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

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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.

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The Waiting Game + Brain Hospital

By this coming Friday (14 Feb) I should know the next stage of my migraine treatment.

Some of you who are not migraine sufferers may be surprised by what might be coming next, those who suffer chronically are likely to have been through it themselves. I don't want to say any more until I have insurance agreements such, but your support as ever is much required and much appreciated. I have been approved for migraine botox - the only treatment licensed especially for chronic daily migraine, so that's a start anyway.

Did you see Brain Hospital on Channel 5 this week? (UK readers only)

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The series is set in The Walton Centre, the UK's only dedicated neurosurgical unit in the UK. Episode 1 included a lady, Helga, who suffered hemplegic migraine (which gives paralysis among other symptoms and complications), and unfortunately this progressed to cluster headache (excruciating headache even worse than migraine!). Her neurologist, Dr. Silver (whom several folk in my migraine support group are also under) treats her during one headache episode in his office, using occipital nerve blocks (a steroid-based injection given at the bottom of the head), which I have myself been offered. Helga, if you for some sorry reason find this blog, I really hope things improve for you - I was rooting for you during the TV episode!

Click here to see the first episode before Thursday 13 February.

Soon, my boyfriend will be writing a blog post about how chronic daily migraine has affected me, him, our life together, and most of all, our future. And of course, I'll let you know I get on with my treatment this week *fingers crossed*.

Kim x