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 how does stop loss and take profit work 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,how to make money from stock market in malaysia 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 https://www.trustedbrokerslist.com/how-to-earn-100-a-day-on-stocks-from-home-in-malaysia/ 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

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.

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