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New to this, hello everyone! SAH nov 10 2010


Sandi K
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I am so happy to have found you!!!! I had my SAH November 10th and although my medical care has been good my neurologist is not a good communicator so I feel blindfolded and alone! I found this site last night and thank goodness for all of you!!! I have learned so much from you wonderful people! Thank you for sharing! I've never participated in anything online before so please forgive me for any errors or faux pas. I can't wait to share and I want to read everything! I wish I had found you weeks ago!

I am a healthy 46 year old woman who doesn't smoke, hardly drinks, eats well, and exercises. I have a high stress job as an IT Manager in healthcare. My non-aneurysm perimesencephalic brain hemorrhage was like being struck by lightening. I was in a stressful meeting and it felt like a 2x4 board was shoved into the back of my neck followed by the worst headache ever and vomiting.

All the way along it's seemed incredible to me. I didn't believe I was as sick as I was. I was surprised that the paramedics were taking me to the ER. I was surprised I was having a CT scan, an ECG, an angiogram. I was surprised was staying in hospital for three days. When they said I couldn't drive for weeks I didn't think they were serious. Although I was a sick girl, I planned to go to work on monday! Didn't they know who I was?! I was so naive.

My poor husband was so scared for me. I felt so bad because he was so scared!

When I came home my tailbone was so sore!!!! I kept saying 'if I had a brain bleed why does my bum hurt?'. I managed to keep my sense of humour even though everything seemed to hurt! I began going to a chiropractor because I thought it hurt from sleeping sitting up to avoid nausea. I've read in another post it was actually from the blood being absorbed into the spinal column.

Now, I'm back to work but oh so tired. I feel I have the freedom to pull back after reading your posts. Last week was a full week, three days in the office and two working from home. It was too much. My head has pressure and I'm bone tired all weekend.

I'm so glad to know from reading the posts that what I'm feeling is normal!!!!

Edited by Sandi K
Forgot my name! Added background.
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Hello!

Welcome to BTG. You will find lots of support here.

I have submitted quite a few posts about the effects of pushing ourselves too hard in the early days and how this is ultimately damaging, not only physically, but emotionally and psychologically.

We sometimes forget that we are in control of our lives. We can actually make decisions post SAH!

Those decisions include how much we do at home and at work.

I was very impressionable post SAH and became overly placid. If someone told me to put my finger in the fire, I would have tried and would have felt that it was my fault that it hurt and that I was 'weak' for not wanting to do it again.

After a while of feeling ill, sick, depressed and out of control; I had to become assertive. I started telling people what my limitations were and this included (for me) resigning from my job and commencing voluntary work.

(Please note that others have returned successfully to their jobs. I'm just explaining my story, which by no means is the 'only way' to do things!)

With recovery, it is better to build things back up in little steps. In this way, you commence a journey of 'achieving.'

If you do too much too soon, you find you have to pull back and reduce what you're doing and you can wrongly think you're 'failing.' You're not failing, but just doing too much and not factoring in the brain injury! (Easy mistake to make and we all do it.)

I am presently seeing a psychologist and I received a letter from him this morning which says, '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.'

(Please note that the symptoms referred to, does not mean physical discomfort! That does subside! It's a reference to how our personalities can often change after a SAH and so trying to slot back into our old lives can be stressful.)

If things are too much, re-organise your week to how it suits you and you start feeling comfortable.

You are allowed to rest lots after your SAH and you will see the improvements if you allow your brain some time to heal properly.

Take care,

Lynne

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WELCOME to the site, i was so glad to find it, i found it when i thought i was going off my head as i was going back and forth to hops dr's and no one had answers. I found this site and all my questions have been answered. My advice is rest be easy on yourself and drink plenty, go and get some couselling too , it helps loads. PM me anytime if you need to talk.

Take Care Rhiann xxxxxxx

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Welcome Sandi,

Wow!! I think you need to give yourself a wee break. Like Lynne says, you will only get yourself down by pushing too hard. Take things slowly and you'll find yourself feeling more positive. I have overdone it in the past and learned the hard way. Good luck with your continued recovery. Hope to hear again from you soon.:-D

Sally. xx

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It is so reassuring to read your posts. I have been thinking that I'm failing and slacking off. With no information it's difficult to understand what to expect. Sometimes I 'perk up', it's liking waking up from the fog. It makes me feel normal and joyful because its a peak into how I used to feel! The trouble is, I jump in with both feet when this feeling comes and I over do it. Then I'm knocked down for days. I'm staying home today. I had planned to go to work but I read your posts and my head feels tight so I'm staying home. I'll do some work but somehow I have to reconcile the expectations and how I feel.

Thank you so much for replies and warm welcome!

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The trick is to pace yourself (& not jump in with both feet) but I know its hard when its 'a good day' your having,,,, the good days will be more and the worst ones less honest it just takes a lot of time.....but you'll get there.....

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Hi Sandi! Glad you found us - it has helped me immensely over the last year. as the others have already said, take it easy and at your own pace. We do have control over how much we do....it is just sometimes hard to know what we're capable of handling until we've tried, and then sometimes find it has been too much. Get as much rest as you can and do drink plenty of water.

Look forward to hearing from you.

Take care,

Carolyn

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Hi Sandi

Welcome to the site and to the family.

You're very early on in your recovery so please do slow down and listen to your body. I went back to work three weeks after my brain hem and had a bed in my office ( i used to work with my husband) - its the only way I coped in the early days. You've still got a fair way to go to full recovery and need to listen to your body at this stage. It was a year or so before I could go a whole day without sleeping in the middle of it.

You need to rest and drink plenty of fluids - dehydration is a huge contributor to headaches.

Look forward to talking more

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A warm welcome Sandi.

I am sure now you have found us, you will start feeling a lot better just by knowing you are not alone in the way you feel. When I joined last January it was the first forum I had ever been involved in too - now I'm a permanent fixture:-D Many have said it is like one big family and it is - only in this family everyone understands and can relate in one way or another to the aftermath of sah/stroke. I know others have said it, but the best piece of advice is not to over do it - unfortunately, due to the lack of information on leaving hospital, it is so easy ending up learning the hard way.

Good to see you took a day off today:-D

All the best

Sarah

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Hi Sandi,

Welcome! Like you and Sarah, this is also the first time I’ve participated in something online. I also felt alone until I found this site. It is amazing that you returned to work. But like everyone else says, don’t push yourself too hard and get plenty of rest.

Take care,

Grace

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Hi Sandi and a warm welcome:-D

You sound like your doing really well and hopefully you'll soon adapt to the fatigue and manage it rather than it manage you!

Be kind to yourself and give yourself permission to take regular rest,its the best thing you can do for that brain of yours.

Looking forward to further posts telling of your continued recovery.

Best wishes

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Welcome

Remember even if its the first time you've taken part in an online support group remember this is a fantstic group of people who are prepared to take the time to help you. I had my SAH in Sept and now have the confidence to just post a thread with any concerns I have. I will begin to respond with my experiences to help others when I feel I can. Any concerns however silly you may feel talking about them, the people here will respond and I cant even explain how much better it makes you feel.

Take it easy with the work thing. Tiredness is one of the biggest hurdles to overcome. Listen to your body and take care

Karen:lol:

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Hi Sandi

Welcome to BTG. a comon thread with all of us is the lack of information about recovery. That's amazing your are back to work so soon. Might be an idea to pull back a little. Most of us go back to work on phased return because the fatigue can really hit in when you do. Listen to your body, all our recoveries are different. If the fatigue is getting too bad or your getting headhaches maybe your brain asking for a rest.

Take care.

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Hi new friends!

I'm still having difficulty finding the balance between what I want to do and what I actually can do. Stayed home and worked remotely (computer and telephone conference calls) on Monday for 4 hours. Tuesday woke up feeling GREAT! Went to the office. It's an hour commute to the the office. 8.5 hours in the office and 2 hours on the road. Tuesday night I had the sensation that I was falling along with a headache and exhaustion. Wednesday stayed home and worked 5.5 hours. Today back to the office. !!!!

I met with our Wellness & Safety dept at work today. It was good news and bad. Good: they want to help me and I've got good benefits. Bad: again I realized that I keep going back into denial. I was in tears. It's like learning all over again for the first time that a serious event has happened and I need to rest and recover. But the old me wants to get up and go!!!

How long did it take you to stop fighting the recovery time? My wellness rep said I was only putting myself in jeopardy if I don't start paying attention to my body. It's been 2 months and 10 days since my NASAH. I want to be my old self.

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Hi Sandi,

I know recovery can be timely and frustrating but I do believe your wellness rep is right on this one and although it is hard, I think if you heed that advice now, you will benefit in the longer term. I probably felt similar to you following my bleed and I took 5 months off work (and I only work part-time) - I was also 46 when this happened. I'm glad I did have that time off although I still didn't rest as much as I should have - being a mother of 3 doesn't allow for that!! Even 26 months on I can get tired and tearful if there is too much going on. I do, however, for the majority of the time feel more or less the same as pre sah - and I am sure you will, providing you don't try to do too much too soon. I don't think there are many on here (if any) who have fully recovered after 2 months and 10 days so don't be hard on yourself. Wishing you all the best,

Sarah

Edited by kempse
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Sandi

Like you say you are only 2 months 10 days post-SAH. It is usual for people to take at least 3 months off work, if not longer.

I had 3 months off then a phased return, but I know now that I was not well enough to go back, but I had family, friends and my GP's telling me that I should just get back to it and return to normal!... :shocked:

If you can ease up a little, and you are getting support from work to do so, then take that support and rest a little more. Like Sarah said you will be better off long term for doing so.

Take care

Kel x

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Hi Sandi I think your question is a good one! 'How long did it take you to stop fighting the recovery time?'.........

I learned that there is an easy way or a hard way.

I choose the hard way. In retrospect I would choose the easy way but life is easier lived retrospectly as they say.

The facts are one day being healthy, independant with plans and ambitions, the next totally dependant and a wreck basically, is a shock to the system.

No matter how many experts told me to listen to my body, or that recovery would be slow like ' baby steps' I thought I knew different. I would be up and running as per normal in no time at all!

In short by fighting recovery time I was fighting myself .But coming to terms with the new me was difficult and like my recovery was like taking 'baby steps'! But I had to learn for myself that by not listening to my body I was making things a whole lot worse, so I learned the hard way. In many respects 2 years later I still am learning!

Lynn said it all in her reply earlier, amongst other things " I had to become assertive. I started telling people what my limitations were". The sooner we accept our limitations the better. Give yourself permission to take time out for your recovery and don't be rushed.Its your time!

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Hi Sandi,

I hope today has found you well.

I have noticed some progress in your posts and attitude and I wanted to say well done!

You explain that you are finding it difficult reconciling the balance between what you want to do and what you can do.

This demonstrates to me, that you have identified what the problem is; and in knowing what the problem is, you can work it through.

You have assessed that your present limitations don't allow you to do the things you used to do.

There is a way around this!

In approaching tasks differently, you can still achieve things; but it may take more organising, more time and you may need to take more breaks than before.

You are tired for a very important reason. It's your brain's way of communicating with you and asking for rest. (This is why pregnant women feel really tired initially. It's nature's way of getting you to slow down.)

Let's think of a way to make this recovery a bit easier.

You say you have good benefits at work. Does this allow you to take more time off work, without severe financial pressure? If the answer is yes, you will be amazed how well you start to feel.

Your brain can't shout at you and ask you to slow down, but it can impose a tremendous fatigue and make you listen. It can also play havoc with your emotions when over tired and the brain will not be ignored! It will get you to listen somehow.

Rest includes 'mental rest.' Your brain needs to put its feet up as much as you. In making it confront the stress of a workplace and commuting at this stage, maybe your brain is feeling the pressure.

Returning to work is something which you could address when your health has improved. You may find that a phased return later on, will have a positive effect in getting you back to strong emotional health.

If it's permission you need... then here it goes, 'Sandi, you are allowed to have a rest!'

I know you want your old life back immediately, but let's approach this in a gentle way. Have a good, proper rest for another few weeks/months; and start thinking about re-building things when you are a bit stronger.

Lynne xx

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All of you are so amazing, I'm blessed to have your time and thoughts. Thank you.

Lynne, I think it's absolutely incredible the changes you have made in your life - I've been reading and re-reading your posts. You must have worked so hard and committed yourself to being a corporate solicitor and you have gracefully (please don't read 'easily') acknowledged that 'solicitor' is no longer the right fit or definition of what you do or who you are. I'm absolutely in awe of that. Many writers have made huge changes but I think your posts speak to me most. I appreciate the detail you provide and the explanation of why and how you have come to the realization that your life has changed.

It's early for me to know if I will follow a similar path. I sent an email to my very supportive boss today and explained that I'm having trouble pulling back and I may need to make some changes to my schedule. He is not pressuring me. The pressure comes from me. I love my job and there is lots going on that I want to be part of. And so continues the struggle.

Acceptance of ones limitations after a hemorrhage is part of the process isn't it. Exploring capabilities would be a more positive way to view it I suppose. A huge part of me still feels 'super human'. Maybe I've developed multiple personalities!!

Thanks again, and Lynne thanks for permission! :-D

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Hi everyone,

I've just re-read all of this thread in preparation for tomorrow. I'm going into the office with my eyes open and I'm going to to pay close attention to what I take on and how I feel. Hoping to see my GP on tuesday to talk about reality. Hoping I can 'get real' with myself this week. That's the goal. To put aside my expectations and listen to how my body really feels.

I feel like a big talker right now. We'll see if I can actually do it. :roll:

Have a great Monday!

Sandi K.

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