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Fabalicious

Proud of my self restraint

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Hey y'all!  I actually got about 5 hours of good sleep last night!(woohoo!) and woke without a slammer (double woohoo!) so today I am feeling energized and full of piss and vinegar.  First off, I must apologize for my unending repetitive postings.  As I was reading this morning I saw that I had like 5 posts that say exactly the same thing.  Sorry about that (my old self)  I will try to do better in the future.  Next thing, what do you do with one of "those" neighbors? you know the type ..." OH yes, I know exactly how you feel because I get migraines sometimes" (punch to the face) , This woman Has told everyone in the neighborhood that the reason I can't get rid of my pain is because I won't follow HER advice.  Her advice is "when you get a headache just take 2 Bayer aspirin and drink a Coke, works every time" ( falcon kick to the face).  She actually cornered my youngest daughter in the driveway yesterday evening and gave her some aspirin and 2 cans of Coke (give me ONE reason not to set this woman on fire) .  So last night my daughter came in and copied several pages of CH general information (including the 55% suicide rate and the fact that this condition has no known cause or cure, and the duration of the episodes) and I took these pages and went next door and sat with her as she read them, and answered all of her questions, clarified some info, even pulled up the terrible you tube videos of cluster attacks and made her watch 3 of them.  and I did all this without causing her bodily harm....it was a feat of unimaginable proportions!  At the risk of repeating myself from another post, patience is a virtue..its just not one of MY virtues.  Anyone else have to deal with people like this?  I would appreciate any thoughts on how to deal (preferably non violently but I am always open to new ideas :D) But now I gotta go, I have PFT and I  dont know how long its gonna last, so I am going to go walk my dogs, and look at the sky, and smell some flowers,  the possibilities are endless!  HUGS and PFD!

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Funny post, Fab (and sad -- and happy, the PF part!).  A while ago, ClusterBusters put together a brochure, "20 Facts About CH," that can be pretty helpful -- IF you can get people to set aside their preconceptions just for a few moments, and IF you can get people to actually sit down and take the 6 minutes it might take to read it.  I don't know where this is available, but I have a copy here, so I'm attaching it.

I think there's another product that ClusterBusters has been working on, called "Living with Cluster Headaches," that I think might be ready for the conference this week.  It has 28 first-person accounts of what it's like to live with CH, or to have a loved one with CH.

20_Facts_brochure_8-24-13.pdf

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I think we all know your neighbor! HAHAHA! Just smile and say thanks, fighting that battle will only sap the energy you need to fight your CH.

But 55% suicide rate? What is that stat? If 55% of CHers committed suicide, my facebook friends list would be half its size and I'd be going to a lot of funerals! Plus, I think we'd hear about that on the news or something!

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Rozen's 2011 study found that 55% of people with CH have considered suicide.  2% of the people in his study had attempted it.  http://www.researchgate.net/publication/51792884_Cluster_headache_in_the_United_States_of_America_demographics_clinical_characteristics_triggers_suicidality_and_personal_burden  The national suicide rate (not attempts; actual suicides) in 2011 was about .01%  https://www.afsp.org/news-events/in-the-news/new-data-issued-by-the-cdc-releases-2011-suicide-statistics-showing-continued-rise-in-suicide-rate

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OK, first of all, that was FUNNY Fabac.  ;D

I would appreciate any thoughts on how to deal.....

I think the way you dealt was ingenious - hard to think of any way better'n that.  :)

She shouldn't be coming after you with a coke and some aspirin any more. Well I pray she doesn't while you're on your walk (vicious dogs ordered to ATTACK).

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CHF I stand corrected...NCBI does state that "suicidal ideations are substantial, occuring in 55%.  I was skimming the article when I told her that...but what the heck...she won't know the difference,, as long as WE do.  and LOL Jeebs, my dogs are little yorkies...they aren't really good for much but company and love.  And Update on the neighbor, she DID catch me walking the dogs, and bought me a plant with red flowers, and apologized saying that she had no idea.  Score another point for CH education.  Kinda wishing the plant had some RC seeds though.....

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Oh OK little pocket pal yorkies - I bet they're good for helping keep your spirits up. Plus you probably don't have to walk very far with them to give them lots of running exercise.  :)

LOL about the plant seeds. If she has any cows in her backyard, maybe you can ask about picking some mushrooms back there.  8-) :D One guy on here did have cows in the yard and realized he only needed to step out there to  snag some busting supplies.  [smiley=vrolijk_1.gif]

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In regards to the 55% suicide rate...I would expect that figure to be actually higher. if  you are just talking about 55% considering it. when i was young, dumb, and having CH attacks without any real treatment options, i took like 15 ibuprofen. i wasn't really trying to kill myself, but i just really wanted the pain to go away. luckily i barfed. i guess im in the 2%.

I really hate talking to people about CH as well. Everyone wants to tell you treatment options or what I get more is what do you think causes it? why do you get them? i stopped worrying about that a long time ago.

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If I had a nickel for every time I said to someone that I get cluster headaches and hear, oh yeah, I've gotten them...I would donate all proceeds to a cure.  I have only personally meet one other clusterhead in my almost 30 years of living with this.  ONE!!  I have to get to the conference one year

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I've always said, if I had a super power it would be to touch someone and have them experience my worst cluster attack for 5 minutes.

But, alas, I don't have that super power,

How did your neighbour react in the end? Has she changed her ways?

MG

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I may have created a monster! For the past couple of days my neighbor has "popped" over to see if there is anything she can do to help.  This behavior is ....nice, but not really needed.  She has offered to help with cleaning, shopping and meals.  lol I told her that her offers are MUCH appreciated, but I am able to keep up with most of the house in between attacks.  Gives me something to do besides wallow in my self pity.  This behavior is better than her previous uneducated arrogance though.  And she DID bring me homemade chocolate chip cookies...still warm...OMG.

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Well, hey, if you can get homemade chocolate chip cookies out of the deal, well done.

I used to say 'life is what you do with your time between cluster attacks'. But thanks to busting, my life doesn't quite revolved around clusters like they once did, and I've managed to carve out a bit more life into my week.

MG

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Well she sure sounds like someone who is really nice, concerned and well intientioned, that's for sure.

If she can go ahead and order some spores, then next time she brings over some cookies, also drop off a dozen grams of cracker dry mm, that would be a super sweet gesture.  ;D

Or best yet, she could ask around among friends and locate some pre-grown mm right away.  :D

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Score another victory another ignorant mind forced to face the facts that these aren't migraines and they aren't your average excedrin "migraine" ugh, or aspirin and coke headache. This shit is life threatening and I've dedicated myself as an advocate to teaching people more about all my illnesses mainly CH and vasculitis though I started with migraines. Great work Fabac I couldn't have recommended a better way to handle such a situation. Congratulations on being so damn patient! I am sorry she was so in your face to your family and community about this what a jackass.

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