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Hello from Julie-Ann


2011JAM
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Hello

I have just stumbled across this site and it seems very interesting.

I am after some advice or help..

I had my SAH 3 years ago now, I am very lucky that my op and everything was plain sailing, no problems. Oh I have 2 aneurysms 1 clipped and the other coiled..

I feel I am bashing my head against a wall, I still am not back to who I was before the bleed. Every now and again I think I am fine and then bang, I feel exhausted and start to get pains again..

Is there anything I can do to help myself or is it a forever thing?

I have been to the Doc's several times and there is never anything wrong with me! So now I feel why bother!!

I'm not in any support group, I don't know anyone who has had this. (well I did meet a lady who tried to help doing acupuncture, she had it too but it was no help, only made me worse!)

I don't suppose there are any answers, I guess we are all individuals

But it would be wonderful to hear from someone 'who's been there and done that' I'm feeling a little frustrated

Thanks

Julie-Ann

Edited by 2011JAM
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Hi Julie-Ann, warm welcome to the site, glad you found us...

Think everyone of us here has as you say been there done that - got the tee shirt.....

It is frustrating but although you think why bother kept plodding hun till you get an answer, swings and roundabouts feel like your getting there & wham back a ways and so on SO know that one hun.

but your in the right place to find that your not alone & sometimes just knowing that helps.

look forward to hearing more form you....take care

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Hi Julie Ann and welcome to BTG. Lots of support here.

You've been on this journey of recovery all by yourself for a long time. I'm at almost 2 years after a non-aneurysm bleed. I am feeling better but have a long way to go. The only reason I feel better is because I'm not working right now which means I'm not as fatigued. When I'm buried in fatigue my neurological symptoms continue to worsen.

I'm learning to pace myself and go slower at things. I overdid it yesterday and am now feeling it today so it's a leaning process!

Sandi K. Xoxoox

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Hi Julie Ann, I am also a new member and am still trying to find my way round the web site. I have found BTG a terrific support. My family although very supportive cannot understand why I am not completely back to normal, unfortunately I have also broken my leg which has put even more work on their shoulders. Until I found this site I have felt very guilty because I can't cope ie get anxious tired and my brain goes completely muddled. I thought I was going round the bend, so it is a terrific relief nto find that this is the way SHA affect one. There seems no ongoing help from the hospital, my GP has no experience of SHA,s his comment to me was, I would never have thought it of you! Good nluck at ieast WE know t5hat it is not a quick fix, like my leg hopefully will be. Best wishes jill

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Good Morning Julie ,

Welcome to BTG, it is a wonderful place place for support. We all have wanted to bang our heads against the wall a few times or bang our doctors heads at least.

I know pacing one self is important, as is drinking water and resting. It is something I have to tell myself over and over. We all have highs and lows and need support- you have found the right place.

I broke my foot about a month after my SAH. I was so angry! I was like "really?? what could possible be next??" I cringe when I hear myself say that now! I believe it was'nt enough to feel like my head was bit by a baseball bat - I think it was a way to MAKING me stay down and rest more.

I thought I would be back to work in no time- seriously......... took me about 5 months. But in the US you have to pay for your insurance and I had no choice. My boss and co workers are wonderful but it has taken every ounce of energy I have. I keep just cutting my hours back.

This place is my glue that holds me together. I should call it ELMER instead of BTG. Lost joke on most unless you have Elmers Glue in UK????

LOL, maryb

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Hi there it does get easier drink plenty of water rest when you need to and don't panic it always makes it worse keep going to your Dr because even if you only talk it is not only helping you but also your Dr because at the end of the day it may make them more aware of how sah survivors feel. Hope you get everything you need from this site. Jess.xxx

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Hi Julie-Ann, Welcome to BTG.

The slowness to full recovery, (if there is such a thing) can be very frustrating.

I have two anneurysms too - one coiled, the other is being monitored annually. Whilst I have not suffered with any pain since it ruptured I have suffered extreme tiredness and I found that very frustrating as I could only get through a day or two without day time naps of between 2 and 6 hours. I know we are all different and no two recoveries are the same, but the tiredness for me seemed to suddenly disappear at the 3 and half year mark. I'm now at 3years and 9 months, but to have had 3 months of feeling normal is nothing short of a miracle as far as I'm concerned. I have gone back slightly this week and had a couple of day time sleeps, but the 3 months without has given me hope that I will get longer periods without exhaustion setting in.

All the best,

Sarah

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Hi Julie Ann.

Wow, 3 years IS a long time to have dealt with all of this by yourself!

I am so happy for you that you stumbled across BTG. You'll find so much information, support and wonderful people who are willing to help in whatever ways we can.

It can be so frustrating - this recovery process. Many of us have struggled with the acceptance of where we are, in life, right now. I too, thought I would be back to "normal" at this point (2 1/2 years later). I also thought that at the one year mark, lol.

I can honestly say, in looking back, that my symptoms are much better now than they were in the earlier days! I do still get fatigued, have migraines - not as many now, very emotional. When I'm tired I muddle my words and walk a little wobbley. If I've had too much activity, I get tired andon it goes.

As one of the others said, keep talking to your dr. They need to be educated in this area. While you may have nothing wrong with you that the dr.s can "see", you've suffered a most extreme and traumatic event to your brain! Our brains don't work exactly like they did before. While each of our cases may be different in some ways, they are so similar in after effects and recovery.

Hang in there sweetie and keep coming back to this site. We're here to help support one another as we go through all these changes in our lives.

Hugs across the pond,

Carolyn

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OM MY GOSH

i didn't realise i had so many kind replies

Thank you all so much, i could cry

i think because although i have family and loves ones supporting me know one really understands...

(Although my husband seems too and we didn't get together until after the SAH. He is very kind and patient always telling me to rest, don't over do it) So anyway because i have felt alone for so long, to suddenly find you guys here and to actually get replies to my post is overwhelming..

Its good to know that fatigue is very common, i have just finished work and i'm so darn tired.. i find it ridiculous and incredibly frustrating but it is wonderful to know it's not just me..

i have tried so many time to except this is how it is but i want more lol

i feel like i'm whinging because for once you all know exactly what mean..

I know i am lucky, i am lucky i survived, I am lucky not to have any real disabilities but sometimes i just don't feel that lucky. I think i need to go to bed now lol

I am off from work from friday evening, so i will have a good look around this site...

thank you again

Julie-Ann;-)

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Julie Ann,

I too feel so lucky as well but the fatigue is overwhelming. I can work some and rest that is it. My neurologist thinks I may of had before SAH ( as I was exhausted the year before) or have now chronic fatigue on top of my fibro. Yea, kick me when I am down! He mentioned trying me on ADHD medication. I see him Sept 17th - that cannot come soon enough. I often wonder if my poor memory etc would improve if I were not exhausted all the time. If I do get some exercise it is like my arms and legs (and heart sometimes) have no energy at all in them. I do water aroebic but I had to get out of pool alast week as I ran out of gas and it has not come back. It is like dragging sand sacks around all day. I just somedays cannot do it and people do not understand that kind of muscle fatigue with the brain fatigue. It use to be one or the other now it is both!

Good lUck and I am glad you found us here.

Maryb

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Hi Julie-Ann,

I was nearly 2 years post SAH when I found this site. I'd had no input or medical support either and just felt like a fraud for not being better (as the GP's seemed to expect me to be). I couldn't believe that there were others on here further along the road to recovery who were still not 'better'. This was really shocking to me. Being able to read other people's comments & posts made it ok for me to finally admit I wasn't 'better'. It was a huge relief & a great support to me.

Since then, I have had neuro psychology input which has been invaluable. On occasion, the np doctor has contacted my GP to explain that how I am is NOT unusual after a brain injury. I have often felt a lack of understanding from my GP practice - I don't think they are uncaring just massively uninformed about the lasting issues with pain, fatigue & cognitive skills following this type of injury, especially if you look well on the outside. Could you ask for a referral to neuro pysch perhaps? Their main aim is to help you understand what happened to your brain, which areas control which functions & help you to adjust as necessary afterwards. Even 3 years later, this would undoubtedly be helpful to you if you have had no help until now.

Good luck!

Michelle x

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