An Open Letter to My Doctor, friends and family and strangers I encounter:

[julie.1]

OK, so that made me cry. Again. You've said it so well Teechur.

I DO feel grateful to be alive. But I also feel angry this thing stole the life I was living, with no warning, in such a cruel way. I feel different, nothing joins up properly anymore, and I am pathetically happy when I achieve the smallest of things.

Until July this year I was competent, confident (mostly) and a respected professional. Now I am having to fight to win/ earn my life back one tiny step at a time. I don't feel sorry for myself particularly, I don't especially wonder why me? But I do want to feel I am 'me' again.

I am angry and upset when people treat me like there is nothing wrong. I'm also angry and upset when they treat me like something IS wrong. Irrational I know.

I'm not sure what my goals should be now and feel like I am floating aimlessly, at the same time I am horribly aware of how fragile and short life can be. It's quite a paradox. Its true, if you have cancer people do 'get it'. You are a cause to fight for, there are multiple charities all competing to support you. Doctors offer you hope. With PMSAH there don't seem to be any answers and for the most part doctors look scared when you ask for advice.

I do feel proud of how far I've come since the night my husband was warned he might lose me. The sad truth is he did lose part of me. So did I. The creative bit I need to grapple with, is how shall I recreate 'me'.

Answers on a post card please........

[kpaggett]

This is why BTG is soooo necessary.

We do need that support, and can't find it. There are few groups that we can go to, no institutions that are called 'Community Center for SAH' like there are for Cancer. When I do find a support group it is for Stroke in general.

Most people who survive stroke have clots in one small area of their brain. We have this blood that seeps into multiple areas and causes a strange array of 'outages.' It is hard for the other stroke people to even relate to us let alone doctors, family, friends, acquaintances, or strangers.

I vow to give support here where we all are. I will keep posting replies even as I heal and feel the event doesn't define me as it used to do.

We all need people who are going through this or have been through it and are further into recovery to help us all. SAH has taught me a lot about the plight of many people who suffer from rare things. I support them too.

~Kris

[Teechur]

So well said Kris. I just got a message on another board where I was looking for someone, anyone who had ongoing headaches after an SAH (a SAH...gah). Of course no one else had had one, but the good thing is someone else just DID have one and he found me and I pointed him here. He's been reading *waves at Mark* and I hope he joins.

We need each other because there aren't other support groups out there or ribbon campaigns or 3 day walks. Don't get me wrong. I am not against ANY of those things and I am glad that they are there to support my mom on her issue right now but at least there is a light in the distance when you are thrown into that scary ocean of "cancer...now what?"

If I hadn't gone out on the net on my own to try and figure out what in the WORLD was going on with me after I got out of the hospital I would not have found sites from the UK (thank the good Lord above) and ultimately this site.

There was nothing from the US of any help whatsoever that I found beyond a few lines in stroke information. Even when I recently took my First Aid certification I had to raise my hand during the "recognizing signs of a stroke" part and say my personal PSA "The worst headache of your life" and the guy who was teaching it sort of responded as if I were criticizing him, "Well we're only allowed to teach what the material tells us." Uh Dood...whatever. I am telling you that one of the signs of one kind of stroke is the worst headache of your life, don't quantify my input. Say thank you and good point and write that down.

It is all oxymoronic how we feel. I feel great how far I've come, but resentful I haven't come full circle. I'm glad that people treat me like I'm normal, but sometimes want them to understand I'm not. I don't want to talk about it, but I want to be asked about it. Don't give me advice, just listen. Don't ask about it, but do.

I've finally come to the conclusion that however we feel at any given moment is right...there is no wrong way to feel. So if you feel at any given time:

Proud

Sad

Angry

Victorious

Depressed

Like Singing a Song (Win)

Like screaming

Like taking life by the throat and showing it whose boss

Like crawling under the bed and hiding

Like telling the next guy who walks into you as you're struggling to regain your balance where to go and when to get off.

Like helping someone else across the street because you get how it feels to feel imbalanced

Happy

Snarky

Funky

Fluffy

Like running a marathon

Like vegging with the telly

IT IS 100% OKAY (although it's probably not okay tell the guy where to go and when to get off 'cause he might deck you)

[rabbit]

Hey you have expressed so well how it feels! And the rule to appear well, when it is what everyone wants.

I walk funny because I suffer from ataxia, and have "balance issues". Two years after my SAH this has not resolved, in spite of heaps of walking and other exercise. I have been told that my recovery has probably plateaued. A physiotherapist once asked me "Why do you walk funny?"

I have to be very grateful for the things which have come right, which is mainly my eyesight. Family and friends are getting used to my being tired all the time, and often nauseous.

Whatever the outcome, it is a huge change in lifestyle and image of oneself.

[Tiny Dancer]

Hello All,

I am nine-months post NASAH. Three things that are helpful these days for recovery:

1) Mindfulness Meditation (I like the Kabat-Zinn cds, particularly the one for pain management);

2) Feldenkrais (a movement-for-health system, group class and hands-on treatment);

3) Session with a neuro-psychiatrist. Don't settle for just any therapist or psychiatrist: mine is specialized and REALLY understands the physical as well as the psychological I'm enduring. Took a long time to find this gentle and understanding doctor, but worth the wait.

Thank you and good luck.

[Susan McGoldrick-Meerdink]

My husband and I were talking just last night and he said "see, you think you've had a bad year...there's always someone who has it worse." I HATE THAT PHRASE! Why say that? My reply: No. WE"VE had a very bad year! I almost died TWICE! I had a staph infection from surgery, a SAH and this last two weeks meningitis. So No, I give us permission to say this year sucked for our family and just because I don't have something "worse" doesn't negate what we've been through!

He laughed and said "you're right! We really are "those" people. The people other families are looking at saying "At least we're not Susan and Eric!"

I think accepting just how bad it was leads to real healing. I'm not sweeping it under the rug in that Catholic Guilt Martyr sort of way! I'm proud I survived and no one is taking that away from me!