I’ve been asked to be involved in a media Campaign for Migraine awareness in Australia.
They are looking at peoples stories of how Migraine has effected/changed Our life’s, they’re wanting to put a human face to migraine.
SOOO I was **hoping ** you might like to put down some things “feelings" about how your life/friendships with family ect: has been altered by Mav.
This way we hopefully all have a voice.
If you could keep it in a brief sentence form , that would make it easier for me to " convey" to them quickly and precisely.
Maybe in point form, if you think that would be ok?
I just don’t want this opportunity to be wasted.
Boy I hope I’m having a good day the day of the interview, or I could just end up being a blithering idiot mumbling away.
Hi Jenny, and good luck with your interview and waving the flag for MAV! Interestingly, there’s been quite a bit of publicity re MdDS over here in the Uk recently, and I keep seeing articles about sufferers with that, so hopefully it’s the turn of MAV to get some more media coverage.
Were you wanting anonymous contributions, or do you want to hear from people who are happy to have their photo/name publicised? I’d be pleased to contribute to the former, but am very publicity-shy and would rather not do the latter, if that’s ok.
My general comments would be that it’s affected my relationships, particularly as I find it frustrating that people don’t understand the condition, and I feel like people think I am making it up/making a big deal of it. For example, my sister in law once said she knows what its like because she stood up and felt a bit dizzy, which is so far from my experience it’s laughable.
Also, it’s irritating that I have to keep myself explaining the same things again and again, for example at work, that I find it hard to travel and need some allowances to be made for me (e.g. it’s much easier for me to travel by car, and to be the driver if possible). Although I am tons better now, there are still quite a few things I will probably never do again, such as swimming (not safe, as I sometimes get positional vertigo) and going on rides with the kids (no big deal, but it’s a bit rubbish not even being able to tolerate a kids roundabout!)
And finally, I have felt guilty about not being able to do things with my children. I felt awful last year as we went on holiday right after I’d had an attack that had put me in hospital, and it really impacted on what we could do as a family.
Oh thanks so much for your input!
Anonymous contributions no names would be mentioned, I will be trying to fit as much as i can in, during the interview, I would like to mention the mvertigo website if they allow me to.
As a place where people can go for support, and also it’s for Australian TV and news, but anyone can contribute , not just the Aussies.
Hi Jenny - that’s great news! Here’s some thoughts:
I despise the way it robs me of quality time with my two boys (aged 7 and 4). The brain fog, general fatigue, and 24/7 dizziness keeps me from engaging with them as I should - e.g. “Dad, can we play-fight”…“no, not just now, daddy’s not feeling too good”. I remember one Xmas - they were so excited and I wanted to feel happy and excited with them, but the constant un-wrapping of presents with them ,and then piecing together of toys, and playing games, etc, just kept making me feel nauseous and I kept having to leave the room, or go for a lie down. Those are moments in time that I’ll never get back and they’re only that age once…
I hate the way it affects your ability to plan anything, and socialise with friends. When friends might ask, “are you doing anything on Fri/Sat night…” you’re never sure what to say because the condition is such that you never know how bad you might be feeling. So, do you commit, and then perhaps have to let people down if the dizziness/tiredness is bad, or just flat-out refuse, etc? I’ve heard people say this is a lonely disease, and it certainly has the potential to affect relationships and undermine confidence…
I feel it has caused the ‘authentic me’ to become lost - I’m a different person - not as optimistic, more tired, more grumpy, more depressed, more anxious. I know that sounds a little melodramatic, but years of 24/7 dizziness erodes your personality and soul, I feel. It’s hard not to be transformed by the attrition. I often pine for the original laid-back, happy, optimistic me, and perhaps even worse, I sometimes worry whether my wife does too (even though she’s been fantastic through all of this).
Thanks for the opportunity Jenny - best of luck with it! Let us know how it goes. Thanks,
That’s great and good luck! I might need all of your help down the road as well. I applied on the “Dr. Oz” show and “The Doctor’s” shows here in the US last weekend so we will see if I ever hear back! That would be so exciting if they did do a show on MAV and it would bring SO much awareness. I think they would have to fly Scott out though for that one!
This is Cheryl, This sounds like a fantastic step. Especially for Australia. There seems to be a lot more research etc done in America and not much happening in Australia, so well done. My symptoms as you are aware are very similar to yours so you know the impact that these have on our lives 24/7.
Good luck and let me know if I can help in any way. Also keep us all posted when it is that you are having your interview and when the article will be out.
I am sure all our prayers are with you.
whoa! thanks guys, for days I’ve been thinking, geesh do I really want to air my dirty laundry to the world?
Thinking of the people who know of me thru my work and how imbarrassed I will feel airing my dirty laundry for all to see, And here you guys are!
Thank you for making me feel stronger , now this means so much more than being imbarrassed.
As usaul the Mav forum proves to be a" very special place" for me.
XXXXX to you, and hopefully I wont make a dick of myself.
Its turned out that the interviews are for channel Ten , in my country that’s pretty BIG!, bigger than I origionally thought, so for us Mavers , keep your fingers crossed , That we can be heard!
Thanks Troy, cheryl, ilovesalem, Tee cee, and Beachleaf, your amazing!
Sorry, just saw this one. Good on you for doing this and good luck!
Briefly, what I would say about this illness is that at its worst it is so disabling that for me (for example) I literally can’t leave the house and on occasions when I’ve tried I’ve had to go home as I feel so utterly and completely crap. The misery is indescribable - just literally feel like my body is shutting down and I’m dying.
What I think The People of Australia should know about migraine that they most probably don’t is that it is NOT a headache. Yes, the vast majority of migraineurs experience it as headache (including as crippling headache pain) and as a temporary sensation, but people should know that there are all these other crappy symptoms - vertigo for one - and that it can be chronic.
The other thing they should know is all the things which can trigger/exacerbate our symptoms - the fluoro and/or flickering lights (ban strobe lights!), the pungent smells and so on. Hopefully with that knowledge people will be more accomodating.
Thanks Vic and so true!
Scottie helped make the paper they had sent me, sound better, on Ya! Scott!
It looks like the interview is on the 19th and 20th of may.
wish it was scott and not me.
You’ll be great. You don’t need me that’s for sure. You have comprehensive knowledge about all of this migraine crap and will be able to articulate it to them perfectly. Go get 'em.
Don’t worry, you will be a fantastic spokesperson for all of us
Let us non-Aussies know if we can watch it on the internet please? Would love to see your interview.
Will do , I should be able to get a copy , this way we can use it for the forum.
And also thanks a bunch to the people who sent me private emails I really should have thought to say that would be fine, and any one from any country could post or email me with their thoughts, not just Aussies.
I have a bunch of good stuff to tell them now, and it’s from all of us.
Hey Jenny, how did your interview go?
Can we watch it on the internet?
Havent heard from them yet… but they did do some interviews with other people with normal migraine and it was very badly done, they hardly gave them a vioce,
hope they pick me soon.
That’s disappointing about the other interviews with migraine sufferers. I hope you get a full chance to explain what MAV is and how it affects us all. Let us know when you have any news