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        Supporter's Corner >> Supporter's Corner >> new girl on the block
        
(Message started by: Fiona on Jun 26^th, 2006, 8:26pm)

Title: new girl on the block
Post by Fiona on Jun 26^th, 2006, 8:26pm

hello out there - I hope you will all put up with my technophobia (I don't even know if I'm doing this message thing right) but I just wanted to say hi.

I've been with my wonderful man for nearly 18 months and am experiencing my first episode (he is the sufferer) and I'm desperate - like you guys - to do everything I can to support him. We live in Scotland and the health service here is dreadful so we are off to see a private neurologist tomorrow - so here's hoping.

To be honest I'm not really sure at the moment what I should be saying to you all - in fact I don't have a clue about any of this - and I'm just trying to understand a bit of all the technical stuff so if you could bare with me, I'd really appreciate it if I could join your gang.
Thanks
Fiona x x x

Title: Re: new girl on the block
Post by E-Double on Jun 26^th, 2006, 8:33pm

hey fiona,

just read as much as u can so that you can understand what it is we go through.
make sure to take care of yourself as well so that it does not burn u out and just ask him when he is not in pain what he thinks you may do for him.

hang in there!

E

Title: Re: new girl on the block
Post by Sean_C on Jun 26^th, 2006, 9:40pm

on 06/26/06 at 20:26:34, Fiona wrote:

hello I've been with my wonderful man for nearly 18 months and am experiencing my first episode (he is the sufferer) and I'm desperate - like you guys - to do everything I can to support him.

Hi Fiona, you can do it ;;D The best thing is to support him mentally, its a painfull thing to watch I'm sure but I promise you he will survive an attack no matter what. Sometimes just my supporter being present helps tremendously, she doesn't even have to say a word.

You've come to the right place, move around the board and feel free to ask any questions you have ;)

Hoping you get some pain free time soon :)

Sean............................

Title: Re: new girl on the block
Post by Garys_Girl on Jun 27^th, 2006, 10:46pm

Hi Fiona - glad you found this site!

Like the others have said, just read, read, read and feel free to ask away. There is loads of useful information on the site.

Most importantly, talk about the cluster attacks with your guy when he's not having an attack. For my hubby, it really helped him when I asked, if I were experiencing these attacks, how would you feel? With that in mind, what can I do?

If you get your comunications worked out before an attack, it makes it much easier during an attack. When one hits, I get a cold compress, make espresso, and put something funny on TV (it distracts him). When it's a really bad attack, he slurs when he speaks and it's really difficult to understand him, so we worked out some hand signals. That way without any work, he can let me know if he wants the cold compress "refreshed," if he wants more coffee, if he wants help getting the oxygen mask on or off, if he wants me to massage his feet or his cheek or his head, etc. etc. etc.

Most people like to be left alone when they're having an attack, but I prefer to be able to be there, and I'm glad he likes having me around.

I know it's morning over there now, so I hope all goes well with the neurologist. Hope you've printed out some treatment info from this site - it seems that many neurologists know very little about CH.

Wishing your wonderful man pain free days and nights!

Laurie

Title: Re: new girl on the block
Post by spidey426 on Jun 29^th, 2006, 2:09am

Hey Fiona.. welcome aboard!
I'm from the sufferer's corner, not the supporter's corner.. so I'll give you that perspective:

As far as the pain goes, when having an attack.. there's really nothing you can do to help.. don't ever feel discouraged or guilty or anything about that. I'm always alone when I have my attacks.. and if I'm not, I go away so that I am alone. There's always that time though when the attack is winding down that I really want a coffee or a redbull or something, but I'm not physically capable of retreiving them.. having someone there at that time would probably be greatly appreciated: )

When not having an attack, and it's that time of the year, it's just nice having people around that are aware of your condition and are understanding. It's really frustrating when I'm in cycle and everyone keeps asking me if I wanna hit the bars with them.. I feel like I've had to explain myself about 14,000 times this month that I cannot drink this month.. and that's a little frustrating. (it's not frustrating that I can't drink, but that it's not sinking in to the people around me).

He'll probably be a little cranky this month.. lack of sleep will do that.. don't take it personally: )

It's great that you're there for him and have taken the steps to become more aware of what you can do.. that alone says alot: )
we appreciate you: )
spidey

Title: Re: new girl on the block
Post by Fiona on Jun 30^th, 2006, 10:48am

Thank you, thank you, thank you! : :D

I can't begin to tell you guys how much I appreciate your advice and support - David too since he has to listen to my assorted ramblings and questions.

Thought you might like to know how things went for us here in very wet and windy Scotland.

David had a bad day that day, he was into his third attack by 1400hrs and our appointment wasn't till later that day. However, when we arrived they went through the usual questions with him and confirmed the diagnosis - which I found very annoying since we were paying this guy to think outside the box and not just pat us on the head and send us home. He then started to try and palm us off with medical talk - oh the joy ! [smiley=laugh.gif]

As soon as he started I launched into all the amazing info I had found on your site and well pretty much stuck my two fingers up at him. His whole attitude changed - I of course wanted to say bite my ass but I didn't I smiled my best smile and condescendingly said thank you, we'll no doubt see you again. For those of you that have seen the film Fried Green tomatoes at the Whistle Stop Cafe' - Towanda!!!!! ;)

David is on 5 days steroid treatment / verapamil and 100% oxygen and although he is feeling a bit tight and weird he has not been in as much pain for two whole days, so fingers crossed. Thanks to you guys we at least managed to get the neurologist to take us seriously - though given that we were paying to see him - he should have been delighted to see us :D

Speak to you all again, I hope - you're all in my thoughts
love Fiona x x x

Title: Re: new girl on the block
Post by Richr8 on Jun 30^th, 2006, 11:18am

Fiona,
You sound like a great supporter. I wish I had one like you although I understand the feeling of pain and helplessness this assignment can bring.

Your honey is on the same treatment that I have followed for my last three cycles. It has reduced my average cycle time from 12 to 16 weeks down to 6 to 8 weeks. However, due to the serious harmful side effects of Prednisone, I am seriously considering other approaches for my next cycle. Please learn all that yuo can about the illness and Prednisone and read the info at the link below to make yourself aware of all the trearments that are available. There are folks here that have tried each, and they will be glad to respond with their experiences.

http://www.brightok.net/~mnjday/chtherapy.pdf

Alos, make sure that you have a non-rebreather mask for the O2 as it makes a huge diference in the speed and effectiveness of the relief he will get using O2.

http://homepages.nildram.co.uk/~tritech2/clusterx/index.html

Title: Re: new girl on the block
Post by Linda_Howell on Jun 30^th, 2006, 4:42pm

Even as a first-timer you are already sounding like a wonderful supporter.

AS a supporter......you've already "joined this gang" ;)

Linda

Title: Re: new girl on the block
Post by Weatherman on Jul 1^st, 2006, 7:14pm

Sounds like he is very lucky to have you. Having you during the attacks and fighting for him at the doctor? Very cool!!

I too am lucky to have a supporter like you. But I'm even more lucky to have recently found the support of all the people who frequent this site. I don't know if your boyfriend comes in here but if not, get him here. Even though I love and need the support from my girlfriend, it's just different when you get it from people that have been there...people that truly understand. It's made a big difference in my life. I've also noticed I now talk about it more freely with my girlfriend and the other non sufferers I know.

Hang in there and way to go for being there for him.

Take Care
Doug

Title: Re: new girl on the block
Post by kayarr on Jul 1^st, 2006, 10:34pm

:)

I am sure you two are lucky to have found each other. Having a clusterhead in the house that you love isn't too much different than loveing any other person of the opposite sex. (OK, except for the weak knees when you see the pain in their eyes or the panic when you know you have to get the new oxygen provider to do their job to keep your hunny out of the emergency room or the amazement you feel when you watch them carry on with just everyday life pleasantly while running on no sleep for weeks on end....)
Hello, good job being advocate BTW:)

Kimberly

Title: computer thicko
Post by Yorky on Jul 20^th, 2006, 2:40am

dont worry love i must be the most computer illiterate person you will come across(post things takes me 4 eva to relocate wat i have wrote)
but back too pain ,having support is half the the battle,but your boyfriend visits hell,just do as he asks,(your bond together will become stronger?)and thank you for helping a brother .
good luck.

Title: Re: new girl on the block
Post by lcollette on Aug 22^nd, 2006, 10:31pm

:) Fiona

I just joined not to long ago myself.....I have a boyfriend of only 8 months and half that time he has been in a cycle.......It is rough enough getting started in a relationship but the beast makes it a totally different situation........Read all that you can, www.clusterbusters.com is a very good website..... to visit.....

The gang here always gives out good advice....When I get really down,. my visits to this site always makes me feel like I am not the only one going thru this hell.....They all have been thru this a whole lot long than we have.....I take their advice and support....So we are sisters in this, anytime you like to chat let me know......it will help to share.....

Lauana ;)