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New to this, hello everyone! SAH nov 10 2010


Sandi K

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hi Sandi

im sorry i haven't picked up on this thread before as everyone has said please take note of what your body is telling you you are so early in recovery one day at a time otherwise we will have to tell hubby to smack your bottom :lol: if you keep doing too much your health is more important to you and us and as lynn says find another route around the problem and keep on the level road to recovery take care and very good luck hugs and cuddles keep safe

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Hi Sandi - and welcome. Sorry, thought I'd commented before...

I SOOO get where you are coming from! It's nearly the 12 month anniversary of my SAH and I've been in denial most of that time lol. I didn't realise how ill I was; I was always able to respond appropriately to questions in hospital even if I don't remember everything now. I really thought I'd be back at work in a month or so. Ha! That was wishful thinking. I kept hitting that brick wall: I'd think "oh I'm ok now" and overdo it and then come crashing down. It still happens to a certain degree, but it's taken months of my support system (psychologist, GP, family) saying to take it easy and listen to my body for me to realise it's OK to say no to people, it's OK to rest, it's OK to not be able to do as much as I could before. It doesn't make me stupid or weak, it's just the way it is.

Lynne's psychologist wrote this in a letter to her and I copied it onto my blog so I could find it again:

'When it becomes clear that your symptoms are permanent, to some extent, then finding a new life that works is far more successful than trying to regain a life that has been lost.'

(thank you Lynne!)

That is probably the hardest thing to do, but I'm slowly getting there.

Being the main breadwinner at the time of my SAH, I was very worried about money and it's been a LOOOONG haul. We nearly lost the house over it, and just before Christmas I thought my 12-year relationship was over too, but we're working on that and we're good now. I haven't gone back to work yet, although I do little bits for one of the Physicians I used to work for, and I'm relying on benefits (in the UK we have something called ESA which you might read about elsewhere). Because I was temping, I didn't have an employer pressuring me to go back to work, but the downside of that is, what new employer is going to understand I need to rest and maybe work 1 hour one day, 3 the next, and have to take the next 3 off!!?!?

So, really, I just wanted to say, TAKE IT EASY. Be kind to yourself. Listen to people who tell you it could take 18 months - 2 years. It sounds a long way off, but bit by bit you will realise you are doing so much better than you were.

Take care!

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Hi Jen ( once again )

Just wanted to say thanks for the quote and thanks to Lynn- It makes real sense to me and Im sure that it is going to help me come to terms with what has happened

My advice to Sandi is make it make sense to you too. It seems to me one of the hardest things is coming to terms with what has happened to you. Im fighting it and desperte to believe it hasn't happened to me BUT it has!!!

Jen you seem to have been through this process and your comments re really really helpful

Karen x

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Hi Sandy

Like everyone else I have to say I am amazed at your return to work, are you sure you're up to it and are not just pushing yourself.

I remember someone posting "A message from your brain" on here some time ago, but couldn't find it, so apologies to whoever did post it, your worthy of a mention in dispatches.

Anyway, read this, it did me good.

http://mbia.ca/wp/wp-content/uploads/2008/07/a-message-from-your-brain-fact-sheet.pdf

Like you I was very keen to get back to work post SAH, in fact the day I woke up after surgery I asked my wife to ring work to re-arrange an appointment with the internal auditors till later in the week...thankfully she ignored me. Two years later I'm still not back at work, the old grey matter doesn't work the way it used to and I'm just not good enough at my job anymore...difficult to accept, but worth it in the long run. Thankfully I have good benefits from work.

What I want to say is please don't push yourself more than you feel able, pre SAH I used to think that everyone off sick should push themselves to get back, but a brain injury is different, the body may heal fairly quickly but the barin takes longer.

Remember this quote I also saw on here.

"I May look well from afar, but I'm far from well"

Good luck, and welcome to BTG

Adam

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Wow, can I ever pull the wool over my own eyes.

I went through the day with way too much going on. I jumped into help at work wherever I could. Was working on my budget... Which was far more confusing and difficult than normal so I kept finding other things to help the team with. Was cranky all day. Was angry at two directors who rudely didn't show up for an 8am meeting when I (with the brain hemorrhage) was right on time. Hmmmm, I was a half hour early. Meeting wasn't til 8:30.

What the heck! Who am I ?

Still came home and thought I had pulled one over on myself.

And then I read the article from Adam. And burst into tears.

Really, at this rate my brain is going to move out of my head!

Obviously I'm still struggling with who I want to be and what has happened. This is crazy. I'm going back into the office tomorrow. Cant help but think I have to try.

Will try and slow down and approach my tasks differently as suggested.

Thanks all! Sandi K - Stubborn as a mule!

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Hello Stubborn Miss!

I love your analogy about your brain moving out if you push it too hard! I can relate to this. I am sure there were occasions in my early recovery when my brain wanted to divorce me!

Think of how a toddler needs to nap in the day. It is because their brains are learning continuously. Every sight, smell, sound is being processed, and as a consequence they get tired quicker and need to have naps. If they are denied their naps, they become irritable and cranky.

If you are presently finding certain work tasks difficult, it is because the brain is pulling the reigns on you and forcing you to relax your demands on it.

With regard to your day in work, your brain is dealing with your commute to work, chats to colleagues, processing all the office interactions; and you ask it to work on your budget too!!

Your brain probably thought, ‘Well, she can forget this!’ and decided to ‘cut out’ on you!! When I get into a muddle, it’s just my brain asking for a rest.

If a toddler asked us for a nap, we would not deny him/her a rest and reply, ‘you’ve got to keep going!’ We would accept that they are tired and wrap them up in a blanket! Our brain needs the same looking after immediately post SAH.

Life won’t always be the way things are now. It will improve. The extreme tiredness is temporary, but you are at a stage where it is almost unbearable.

We usually push ourselves too hard post SAH and we are all guilty of it. But, as far as I know, SAH recovery is not an Olympic event. There is no medal for the fastest SAH recovery and there are no world records!

Maybe you are judging yourself too hard(??) From what I can tell, you don’t seem to be receiving pressure from work colleagues or family. The pressure is coming from you.

It is your entitlement to live your life as you see fit. I am simply pointing out that your present fatigue is normal and explaining why you are tired.

You may continue at your current pace if you wish.

But if you want a rest, then that would be OK too.

Just a thought, if you find the idea of reducing work too difficult; could you simply take a week or so off work? (We call it taking a holiday here; do you say vacation?) This may allow you to judge things with more clarity. Maybe a little week off work would be a nice rest, to reward you for your amazing effort in returning.

Lynne xx

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I'm home today. Sooooooo tired last night. Was in bed by 7pm and slept 11 hours. I feel ok this morning but will cut back today. Learning balance!

Lynn, blue sky and sunshine would be fantastic right now. It's not the rightntime though. We have booked 2 weeks in Playa Del Caremen Mexico at my 1 year mark from the NASAH. November 2011. Timing was coincidence, we're going with friends and they booked the dates. I will dream of that in the meantime to help me relax!

Also booked a few days in Vegas at the end of Feb. Booked it months before the event. All those lights, crowds, and noise will be interesting. I will be retreating to my room far more than usual!

Will attempt the budget from home today, in the quiet.

Thank you for your suggestions and experiences everyone!

Sandi K.

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  • 3 months later...

I was sitting eating lunch after spending the morning weeding a flower bed when I realized it's 6 months today since I had my PM-NASAH.

I re-read this thread and it warms my heart. You are all so supportive and we've had many many threads and posts since we last posted on this one. I was so very lost and alone and confused and I'm so very grateful to all of you.

I still get angry when I think about being sent home from hospital with no forewarning of what was to come. My husband and I were left on our own with absolutely no idea what really happened or how long it was realistically going to take before I was ready to return to work. I was told by my neurosurgeon that I did not have a stroke. Everyone in the angio gram room was so excited when they couldn't find the cause of my bleed. But no one explained what happened or what to expect. I remember the technician telling me not to strain when I went to the bathroom and how important that was. Thank you for telling me that but my goodness ther was a whole lot more to be said!!!!!!!

Even my GP was left in the dark and couldn't help me. I was her only patient with a PM-NASAH. She and I have come a long way in the past 6 months. She is learning with me. As is my chiropractor.

Well, going back to work was iike jumping off a bridge. You guys tried to tell me to wait and slow down. I was so trusting in the medical profession I was sure they would tell me if I wasn't ready. My GP didn't know and neurosurgeion.....hmmmmm. My symptoms got worse.

I finally saw the head of neurosciences 4 months later where I learned that what I'm experiencing is part of normal recovery and I went back to work too soon.

Now I'm waiting for my medical insurance to kick in after they first turned me down. Hopefully they'll approve it this time. Occupational Health is call this afternoon so I can ask how I initiate a return to work schedule. I see my doctor again May 20th and I want to be prepared in case I get the green light.

I feel a lot better. I still have moments of dizziness and tight head and lack of concentration. But I've learned that quiet time will help me get through those moments and that I need to rest when my body and brain tell me to.

Where would we all be without Behind the Gray? We are so lucky to have this forum.

Karen, thank you for starting it!!

Sandi K. Xo.

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Congrats to you on your 6 month mark!!! Well done :) I think you've been amazingly positive and so helpful to others through out your own recovery! Thank you for that :smilewinkgrin:

I know the lack of support/knowledge that we receive after being released from hospital is next to nothing and has been frustrating for so many of us! We've all had to figure it out for ourselves, and for me - BTG was the best help (and still is) I received. I'm so glad we can all be here for each other, what a wonderful group we have!!!

I'm so glad that you do take care of yourself and listen to your brain. You're a very smart woman! I also am pretty sure "why" in the bigger scheme of things, that my brain exloded too! Some life lessons for me that I'm coming to terms with and working on. Think somebody was knocking on my head, "Hello, McFly, are you in there?" :lol:

You hang in there sweetie and keep doing all the good things for yourself. You'll know when you are ready to tackle the work setting again. Glad your GP and chiropractor are learning along with you - good for them. Not all of them are willing or will give the time of day to do so.

Love to you Sandi!,

Carolyn

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  • 2 weeks later...

Hello! I have a progress report that I'm quite proud of! :-D

In February I went to Las Vegas with my guy and another couple. We had a great time and I surprised myself with my ability to almost keep up with the rest of them although I'm sure they slowed down for me. It was 3 months after my head blew up. The day we came home I could barely focus my eyes on anything, I would lay down and the room would spin. I couldn't engage in conversation and I was so grateful that my stepdaughter prepared supper for us. I was on the couch for at least a week recuperating.

Today we returned home from another trip to Vegas. This time it is 6 months after my head blew up. I was more aware of my brain messages during the trip this time so I wasn't as easily able to ignore when I was tired. However, today after flying home I was able to go grocery shopping, come home and take the dog for a walk, phone my mom, visit with my cousin who stopped in after her work day, make supper, and catch up on Corrie. That's a lot!!!!!!!!!!!! I was dizzy by the time I was making supper and I caught myself staring out the window but I carried on.

It's a HUGE difference!!! In just 3 months. :-D

I had to share it with you. It shows that we do progress, we just don't see the little steps every day.

Sandi K. Very sleepy tonight!!

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Job well done Miss Sandi!!!:biggrin:

So glad you were able to go to Vegas again and have fun AND listen to your body. It's great you recognize the progress you've continued to make.

Thanks for sharing it with us:wink1:

Huge hugs ((( ))) for all you've accomplished!

Carolyn

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Thanks for your supportive comments, I love you guys!

This is a GREAT day!

I feel good, a bit headachy but still pretty darned good considering I just returned home yesterday from Vegas.

I went to the doctor this morning.... I get to go back to work!! :-D:-D:-D

I have to meet with Occupational Health and my boss first and then the schedule is set. It will be very slow, two weeks of a 2 hour shift one day per week, then I move up to two 2 hour shifts and get re-evaulated before week 4.

Feeling good about this! :-D

Sandi K. xo

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