Nessie

Hi Michael, A late reply from me, I haven't been here much... Sorry if the RLS advice shocked you But thought it was worth sharing. My husband's a Scot and although living here he's not all that easy talking about these things either.. so it's not the geogrpahy, but the culture I guess.. ( in fact he was shocked when I told him I sent you this link... LOL brits are very funny imho *waves*

*waves and doesn't know what to say, as usual since my sah..* But Welcome!

*waves and doesn't know what to say, as usual since my sah..* But Welcome!

reading this thread it seems there are a lot of us with our anni-versary in june.. ;( Just past my first on the 4th myself. And although we went out to dinner and try to do something nice I felt is was horrible too. No immediate relief after. This month I spend a lot of time at the hospital just like last year.. ( MRI, Angio, appointments with neurologist).. next saturday is my birthday and that's the day I was reseased from hospital last year. It seems that this month is just packed with dates that don't really bring happy thoughts. Hope that next year, as some say, will be milder and easier. ( and I don't want to be anywhere NEAR that hospital!

I just only saw the date. *grin* They should know better than release these kind of articles on a date like this.. But anyway, it is NOT a joke. ( google the big M-word and RLS and find more scources) Talked it over with my doctor a few weeks ago. Get restless legs when I have overtired myself.

*waves* Hi. Welcome here. I came across this article a while back.. Never knew I would be recommending it publicly to a Brit that I don't even know.. But you never know, it might help you... http://www.newscientist.com/article/dn20323-masturbation-calms-restless-leg-syndrome.html

hey that's good to hear Michelle, Karen en Jen, I just hope we can get this behind us quickly. It's just all too much! But your story's are full of hope! Let's focus on that. Hope.

Hi! A little update here, for in the green room I don't seem to get more in then an few *waves* now and then. The last weeks I've been overwhelmed with all thing things going on. Next tuesday I'll speak to my neurologist again about a new angio (i hope that's it) and following that a big possibility of a new coiling. All while my 1-year-survival anniversary is coming up next week as well... It feels like all my rehab-work has been for naught, although I realise that that's not true, really.. But I'm just scared to go back to hospital and wrecked that my last MRI didn't show what I wanted it to show. When they told me a year ago 'that I should look where I'd be in a year's time' I laughed at them out loud. Ridiculous! I'd be back on my feet in no time at all. Although I have come a long way, I'm nowhere near to where I was. And now with the prospect of getting another coiling.. (with the chance of a new stroke estimated as 1 in 20) I just feel lost. Everything is happening at the same time here, so the battle for my benefits has started as well. Luckily my sister, dad and lawyer (never had one before!) are doing all the work, so technically I don't have to worry about that. (but of course I do) If we don't win this it means that amidst all that is happening we need to sell the house and all that.. Husband is slowly getting stuck in the bogs as well. But I am grateful and happy that he sees it and is finally accepting help. He had his first appointment with a counselor ast week. So far his strategy was: i'll go and talk to people when all is over and better. But he can't keep that up anymore. And for me the thought of him getting depressed are too much to bear. I need him strong!!! ( he's trying to find a new job as he was laid off 18 months ago. Getting a new job is hard enough as it is, getting a new job while depressed is even harder. Anyways, sorry for the rant. I do try to keep reading your posts, and if you see me *wave* in the greenroom or somewhere else, It's from a good heart.

*waves*

*waves*

Wow you are moving fast all of a sudden!! Good for you!!!

*waves*

When I was in the rehab center I took up painting on silk. There was also a lot of men doing it (after conquering their initial reserves). the kind we did was Gutta (or Serti) painting: there's a patern already on the silk, and because of the gutta outlines you can't colour outside the lines. (all you do is touch the silk with the tip of your pencil and the silk absorbs the paint into the compartiment) Hence it is easy, you can hardly do it wrong, and great to discover that you can make something beautiful. I have seen a few man beaming of the gorgeous scarves they had made their wives I bought a starter set myself, but after making a wrong frame i never got round to actually make it work. I'll show you some websites that feature it, just so you can get an idea: http://bit.ly/lnQxfb (silk paint starter kit) http://www.silkpaintingpatterns.com/ http://www.ideen.com/en/ideengutta

OMG I had my SAH in the middle of my hayfever-season... I remember I was blowing my nose every 5 minutes in the ICU before my coiling. I really had to beg for a nasalspray. They wouldn't want to give me one because they thought it could be harmfull.. As I read it now I could have easily blown myself out of this life right under their hands. Scary article. And I don't want to give up coffee, but apparently I can guiltlessly smoke!

Dear Carolyn, My heart goes out to you... it just s*cks to feel like this! I hope you got some good inmput and suggesttions from you brave post!! There's a few things I'd like to add myself (some things already mentioned by others) I don't watch the news. I used to be an engaged watcher, politically active and the works, but now it makes me cynical and upset. I have a new arrangement where I schedule the day I open any mail that looks official. It has brought on too much panick if I do it by myself and the moment it falls on the doormat. It has ruined too many days. Every day I try and think of something that makes me feel proud about myself. It can be 'I brushed my teeth before I went to bed', or 'I started translating my blog'. Just as long I had to 'work' for something and did it! (I have learned to do this myself when I was in a state about 10 years ago, and ever since I have taught it to many of my patients too. For me it works. It is very positive and gets easier as you do it more) I am open about how bad I sometimes feel. (I dó pick my moments and persons though.. I can tell my sister that I really feel bad, but try to spare my husband at the moment, for he seemes to have reached the end of his rope himself. Aside from that my sister pointed out yesterday that I always feel depressed 2 days after I overdid something. I rush up my adrenaline to go somewhere.. the day after it still lingers and the day after that I collapse into a big hole... I hope any of this helps. I wish you were here, so I could give you a big hug!

Hearing the ocean in my ears was my first sign when I got my SAH. I have it occassionally now and am instantly scared when it happens. No pulsing tinnitus sounds for me but enhaced hearing, especcially high pitched sounds have bene with me ever since. (as are sensitivities to other sensory systems... )

I haven't ventured out at all...To much noise, hassle, etc. Have visited my parents in the south of the Netherlands twice and that was a big ordeal. After atrip to Maastricht ( 3 hours) almost 3 weeks ago, I'm only just settling back in my normal routine... Dreaming of flying to Edinburgh when I feel up to it... The city we got married in a year and a half ago next sunday...

*waves* Hi!

*waves* Welcome!

For those of you looking for my blog: www.ragnaja.nl I know it is in dutch.. would love to do it in English.. but now's not (yet) the time... I hope in a few months I'll have the time and energy to set it up.. Big hugs for all of you, all your compliments make me blush!

LOL Sandi it has crossed my mind. And other peoples minds as well. I think it would be great, and would love to use the momentum. but for now I am too unorganised and not fit enough. Ever since 'the talk' my nightmares are back. There's just too much going on. so back to basics.. My snappy, crappy teary basics.. *taking it easy*

*blushes and grins*

Wow I am overawed by all your reactions! It is funny that when i decided to go and DO this I only thought about if I wold be able to manage remembering my speech and things like that. I never thought about the after effects.. My twitter, and email has exploded, and I have a hard time keeping the pressure of 'what's next'at bay. I want to translate my blog into English, reply to everyone, go out there and get a new job.. ( as of today my contract is expired and am now, aisde from my own practice officially a jobless patient). But then i realise I can't. This was a big leap forward. A very registered and carefully planned one-time-only event. Falling back to my normal routine is a bit harder than I thought it would be. Quite confronting as well. But I'm very proud I did it, and am realy happy with all the fabulous responses I got. Can't look at myself anymore though.. I only hear my nervous tone and all the UNpossible grammar mistakes I made.. LOL Anyways, Thank you all for your nice words, It is truly great that what I said is inspiring to some of you, and helps you to get on YOUR own ship. All you reactions help me to go on on my own voyage! With Love,

LOL that came after! ) Tears&Trembles

Wow I am so moved by your reactions! And since it is crying-rivers-day that's what I'm doing. A few reactions to your questions. I have practised for 10 weeks. By myself, on camera ( and then sent it to some people for feedback). I was walking around recording it in my phone, so I could listen back later. ( it always went wrong in the same sections. After that I moved on to keywords. I think I practised it well over two hundred times. I brought my papers on stage, but was surprised that I didn't acually need it as much as i thought I would. In the work I used to do i was always happy when I could get to a conference, I have always liked doing 'talks'. The organising people were people I knew and I asked them if they thought my story could be of interest. I have never done anything this big. And it is a weird feeling that my SAH brought this on... I am taken aback by all the attention this generates and I don't think I would have dared if I had known.. And now, it is lie-on-the-couch-time for me! Have a nice evening!!