Will I ever be ""normal "" again ??

[Guest whacksical]

Hi everyone,

how nice it was to hear about this site and I have just enjoyed reading all your storys and comments.

I am 3 years post SAH, but I didn't have surgery as they couldn't find the source of the bleed, and was wondering if I will ever be back as I was. I was always a very busy person, always held down a couple of jobs and had several things on the go at once.

I still don't work as I feel unable to cope with it. I still sleep every day and have learnt to give into it as I can't function unless I sleep and start again.

I am less tolerant than I used to be, uncomfortable in many situations, and really I suppose a bit of a hermit. I like to be at home. I get very frustrated by still living a very structured existence, but feel its the only way I can get through the days. I am not at all spontaneous.

Also, I feel like I am miss understood. I have to go for interviews every now and then for incapacity benefit, and I get the feeling they don't really understand. Like I am a faker. I have never been "ill" before and I really don't like it, and feel that because I haven't got a great big bandage or a plaster cast it isn't real. I mean.. I look ok..and have all my functions..but I'm just not the same..or as capable as I was. I guess I rarely feel 100%.

Does anyone else feel like this and is there such a thing as a 100% recovery.

Debbie

[Guest Firefly]

I am so sorry you are having to go through this!! You are not at all alone hun!! Many of us struggle with the same questions everyday!! We all know the "you look ok", or "you look so good" syndrome!! I even have people ask if I am all better now?? It is normal to want to withdraw from the ones who do not understand hun. Please try to remember that there is no way that they could ever understand and never will. You just have to try to explain it the best you can to the ones you love & are close to. You will learn to not let the rest bother you, I know it is hard and I still get frustrated on bad days!

I hope you don't mind me asking some questions??? When is the last time you had a scan or check up? Did you ever have an angiogram for the the SAH?? How did you find out you had one?? Did you have symptoms, if so what?? How old are you if you don't mind me asking? I tuned 47 in April. Have you talk to your Dr. about disability? Do you take any medicatons to help? I hope you don't mind the questions, you don't have to answer them, I will understand! Do you have a pet or children? I am just curious, everyone seems so different yet have many of the same after effects??

My kitty and old dog are my pals and great for the moral!! They are my children!! Pets are proven in some studies to help people to heal and stimulate the brain!! I know mine make a differnce in my life!!

My NS told me that since I did not have the blood drained immidiately & have the pressure and swelling taken off of my brain, that my brain has to absorb the blood & that can take up to 2 years or so??

I can definately relate to you sweetie!! I have been homebound for 2 years now due to a rupture on 7/29/05. I went through a lot trying to get diagnossed, I didn't have my surgeries until Sept. & Oct. of 05. I had a stenting and coiling done with complications. I still have a long recovery and many symptoms. My anuerysm was next to my left optical artery & comm. arteries, behind my left eye. I still have speech, coordination, cognitive problems. Light sensitivity, blurred vision and severe headaches... I take several medications to help me though.

I too sleep a lot but, part of that can still be your brain healing. I have severe fatigue and also struggle with bouts of bad insomnia. It has not been easy but, I do have a good support system to help me get through!! My husband, sister, friends... I listen to music and write poetry to help me get through it. Laughter is the best medicine! I try to do things with the ones I love even if I have to force myself to get out of bed to do it!

I was a firefighter before this happened and my life has changed so much, it has been a huge and not an easy adjustment!! I am getting there though and I have read several people who had thiers done years ago and every year got better. Some even gaining use of paralized limbs... Please don't lose hope, I hope you try to pray about it! (Even if you don't believe. You may be surprised, I was!!! You do not have anything to lose hun!! )

The most important thing is that we are still alive!!!

I just celebrated my 20th wedding anniversary in April. I don't even remember my 19th?? I do feel lucky & blessed to be here!!

Even with the "baggage" we carry around in our minds every day!

I know it is hard to find your "new self", I take it one day at a time.

I hope you can find the strenght to fight and try to go out with your friends or do things you love. Pamper yourself! Sometimes it takes a lot longer for some of us to heal. Hopefully you will continue to progress more quickly now. i have been told by Dr's that the 2 year mark or so is the first real turning point for some of us. Your brain takes a long time to heal and really needs to be stimulated to promote healing. Even if it is just playing a game on your computer, reading, word cirdle games...

You can do it hun, you are a survivor!!! That is what support groups are for, you can talk to us about anything!! I have made many friends who truly understand what we are going through!! I really helps to know others going throught the same thing!!!

I also wear a medical ID bracelet now, my sister found me a cool one that looks like a belt and is stainlsess steel and tough. It might help with the way some poeple who don't know you or understand?? Also in case something would happen, it is a good idea to have a neclace or bracelet.

I want to get a T-shirt that says " Drain Bamaged" but, some people prob. wouldn't get that either?

I just started massage therapy and boy does that feel good!!! You might want to treat yourself to one every once in a while, I am going at least 2 times a month!! More if we can afford it?? It is very stress relieving, calming and gets all the muscles and arteries flowing good... Most of all it feels so good!!

You have to be careful laying and sitting too long, it can cause blood clots if your not careful. You need to move around as much as you can. I go up and down a lot of stairs a lot!!! Going to start using a treadmill too, I have gained sooo much weight, I have to do something!!! I was a size 8 when I had my rupture, gained a lot of weight being homebound. I don't eat very much but, my meds prevent me from losing a lot of it. I need more exersize that is for sure, my arms are so weak compaired to how they use to be!!

I still pray and hope that I can return to being a firefighter in some compacity, some day? I miss it so much!! Hold on to your dreams hun, you are a survivor! Just give it time and try to push yourself to do things even if you don't feel like getting out of bed, you will feel better once you are there!! Or doing whatever you choose, even if it is cleaning, watching a movie...

I am going to try to start drawing and painting again too, I am not very good but, sis got me a "boat load" of supplies, including some good instructive books. Might as well try! I did a few things but it was a long time ago and not very steady handed yet. Getting better all the time, I have some days I can't do anything still. But, are getting fewer and farther between as time goes on and I keep pushing myself to do things.

It is nice to meet you Debbie, I will be keeping you in my prayers hun! Feel free to write me any time. Please stay in touch!! This is a great site with some wonderful people and they have a good sene of humor, which is nice!! I truely understand how you feel, many of us do. Take care, Tricia

[rince]

Debbie,

Don't get too hung up on getting back to "before", we can never recapture the past even without the added complication of SAH. I'd like to be 17 again but it's not going to happen! We are all different people, no matter what "brain damage" we might of suffered but that doesn't mean we can't recapture the enjoyment factor of others. We've got accept the person we are now..........

Scott

[AndyH]

Hi Debbie,

I wanted to answer this post but I haven't suffered any brain injury, my wife has.

I have never felt'normal' and have prided myself in my difference. As Scott said in the post above we never get to be the person we were again. I am not the same person that I was yesterday and I am not the same person as I was prior to Heather becoming ill. Some changes happen slowly some, like brain injury, happen fast. Its a case of what do we do with the changes.

Once again I know I haven't experienced the same level of change as you or Heather but I know that acceptance has helped me to adjust to the differences in my life post SAH.

Take care lass.

Andy

[Karen]

Hi Debbie and Welcome!

I can empathise with you .... I suppose that my existence is fairly structured too with stuff like housework, shopping.....I tend to want to get all the basic stuff out of the way, before I start on anything else.....just in case I run out of steam. I'm probably a bit too practical in that sense.....but yes, I'm slightly less spontaneous then I used to be.....but in other ways, I also don't tend to plan too far ahead either..... as I never know how I'm going to feel....I take most days as they come, if I can. If I could lose some of the physical problems that I still have, then I'm sure that I would think differently. Hope I'm making sense here.....

It sounds as though you need to be a bit kinder to yourself? If you're still not able to work because of fatigue etc then you're probably still recovering....nobody knows the long term affects from a SAH and we're all affected to different degrees by the damage it causes. Don't worry too much about what other people think, even though it can be damned annoying and frustrating.....if you're doing the best that you can, then nobody can ask for any more of you.

Do you have friends that you see? Admittedly, it's easy to start to feel isolated and lose confidence...... When you say, you like being at home (so do I, by the way, "home, sweet home"!) is that because of the confidence factor? I try to get out most days, if my body will allow it and the dizzy spells are manageable ..... it might not be for long or anywhere particularly exciting, but even a walk around the block or the park seems to lift my spirits. However, if you're feeling particularly anxious or feel depressed, perhaps you should have a chat with your GP?

Anyway, enough of my waffling.... The website is busier during the week days, especially in the Green Room, so come and join us for a chat. There's some good guys on these boards and many of them will understand how you feel.

I'll let you know when I get 100% recovery!

[Janet]

Hello Debbie and Welcome

I'm 9 months post SAH and have not long started back to work on part-time medical grounds. I'm currently working just 20 hours a week and supposed to be increasing that gradually over the next 13 weeks to my full-time hours. I don't think that it will happen though as just doing the 20 hours is exhausting.

I find that I'm not the same person as before at all with my confidence in my own abilities at rock bottom. I find that as well as problems with fatigue and short term memory I also blurt out the first thing that enters my head which can be embarssing as its not always politically correct.

Like yourself I like everything to be structured which is why I am trying to return to work as I found it hard maintaining any sort of routine without getting back to work.

Don't beat yourself up with what you feel others may be thinking just take each day as it comes, I've yet to have a day when I've felt a 100% .

Best Wishes

Janet

[rince]

I've learnt to ignore the voice in the back of my head telling me what "other" people think. It used to be a major concern as it got so bad even I was convinced other people thought I was a "faker", but I know what I feel and what I can and can't do. The people close to me know, the people whose opinions I care about know. Anyone who wants to think I over play things then that's their right, and the more I attempt the more people like that I'm going to come into contact with. Just worry about how you feel and what you feel comfortable with, slowly over time that will increase more and more.

Scott

[Karen]

Ditto Scott, well said............I'm exactly the same.......I now have enough confidence to say the same ...... and don't give a s**t what other people think, that don't know me ...... I know how hard I try and that's the most important thing..... I was a real hard worker pre-SAH and most people remember me, the way that I was ..... if anybody is going to the Southampton Boat Show in September, then I'll be on the Caterpillar/Sabre/VW stand.....only for a couple of days, but my old Boss has faith in me and he's asked me to join the team...... might have to take a lie down in the afternoon..........but I'll drag myself there, if I have to....

I've decided to do it on a Voluntary capacity.....but, if I achieve those few days then that will be enough reward..... if you're there, then look out for the name badge on my shirt .....

[Guest whacksical]

Well....what a response. thanks everyone for taking the time. Oh..and thanks Andy for indirectly getting me in here... I read the article in the Mirror.

I was 45 when I had the SAH. Hit me one Sunday afternoon like a rocket. Didn't do anything for about 4 hours and then gave in and let hubby call the GP. Never was a doctor sort of person. Then everything went into overdrive. I have lots of blank bits and lost days, but I gather they more or less knew straight away what it was. Didn't really come to life for about 4 days and then didn't really realise how ill I was. Infact it took me weeks to accept.

They didn't operate as by the time the blood dispersed some, the bleed had stopped, I think. I did have 2 or 3 angiograms but that was all. Got kicked out of hospital after 14 days and thats when the fun started. Thats when I really realised I wasn't very well. I don't have any meds apart from vertigo tablets which is now worse than ever and anti depressants.

I think that accepting that things were different was the best thing I ever did. I have 4 children, the youngest being 15 now, and my family are great. I also have a couple of good friends that are very supportive and know the score.

My family are usually the first to say "go for a sleep ", as they say it comes over my face like a red mist.

I have got into a sort of routine, but everything takes longer as I don't multi task as I used to. I started to take Josh to school every day about 3 months after SAH, just to get me going in the mornings, other wise I don't think I would ever of got dressed. From school, I do shopping that needs to be done and then home.

Whats odd is, that if I need to shop, thats all I do that day, and the same with the washing, ironing etc. One big task a day, where as before I would wash, iron , shop, clean windows , work etc. you know what I mean.

Don't get me wrong, it works that way. Its not a problem like some people have to cope with and I am so glad to still be here, though it is still scary at times.

I think I might be sounding like a moaner.... Lol...but I'm not. Life changed in so many positive ways, and we have a good life. I just get a bit fed up with the sleeping as I feel like it dominates a bit too much.

thanks for the ears you lot

Debbie xx

[Guest whacksical]

Oh and Scott,

I wouldn't be 17 again if you paid me Lol...xx

[Karen]

Debbie,

Well glad that you're here and your life sounds like mine .... I used to be able to juggle many balls.....but like you, I can only get one major task done a day......so, your definetly not alone .... not sure whether that's the brain's way of telling us to slow down or if it's a conscious choice/lifestyle change as such ... to be honest, I really don't want to have to run around at hundred miles an hour anymore ... looking back, I used to try to do far too much ... Like you, I too get the dizziness......it's ****** awful isn't it? life would be a lot easier without it and I think that you have to experience it, to appreciate how debilitating it can be.

Andy will be really pleased that you found us through his and Heather's newspaper article.

[Guest Firefly]

Debbie, I just wanted to say that I can relate with you so much! I had a lot of trouble getting treated in the begining myself:?: I am entering into my 3rd year of recovery and still sleeping, learning, coping... I value every day I have and know God kept me here for a reason! I just hope to wake up and get well enough to do what it is? I just had to learn how to listen to my body!! Stop when it tells me to, sleep when it wants to and do what I can when it lets me!!

Going from being a firefighter and saving lives to fighting for my own has been a big change! But, I am good with it now. Life changes all the time, for some of us more than others. We are all survivors though and that is a very cool thing!!! God bless us all! It helps to have other to talk to who understand!! I have also been very blessed with a huge support system at home!! Esp. Bernie & my Sister! I am getting there ever so slowly but, I am getting there!! Take care and you are all in my prayers!! Tricia

[Louise]

Hi there

Wanted to say 'Welcome' and not a lot left for me to say except ditto what everyone else has said.

Yes I know exactly what you mean about feeling like a faker at the Incapacity interview my husband had to fill in one of those never ending page forms (who thinks up those questions Hm) anyway he wrote down all the hospital terms for things & got my phycologist to send them a letter too, must have worked.......

I know I will never be what I was, but hey we all change through out life.

Take care

Louise.x

[Skippy]

Hey Debbie

I'm nearly eleven months post SAH and probably one of the luckier ones who hasn't suffered much physically as a result of the SAH. All I'm left with is the fatigue and the occasional headache.

I find I'm more tolerant than I used to be but from a spontaneous side - I'm not too hot on having plans changed at the last minute. I prefer to have something to look forward to and that keep my mind focused on.

I went back to work 3 weeks after - but only because my husband and I have our own company and I have a bed in my office that I use every day to have a couple of hours sleep on.

My home routine has definitely gone to pot - I used to do a weekly blitz of the house - hoover, tidy, polish etc and Paul ironed. Just lately Paul has been at work so much that not much ironing has been done and by the weekend all I want to do is relax. I'm aiming this weekend to blitz the kitchen and living room and sort all the clothes that need ironing - whether these plans come to fruition or not is another thing

But as the for the normal - I'm with Andy - never been run of the mill normal really - what is normal for me isn't for everyone else and to be honest I don't think I want to be the fiery, temperamental, moody person I was before. I'm now generally a lot calmer and spend more time with my little girl - the 'good' thing about the SAH for me is that it has made me put things into perspective and re-order my life.

As soon as I stopped trying to be who and what I was before the recovery became a lot easier - I used to beat myself up on a regular basis cos i can't do all the things I did before - but hey - I'm still here and I can still do some of the things which is better than nothing.

Anyway, enough of my rambling. Just one more thing to say really - welcome to the family and I hope yo get as much support and comfort from this site as I have.

Love Sami xxx

[Guest whacksical]

Hiyas everyone....OK...you sussed me...I was never normal. LoL. I think you would class me as wacky, and I guess thats what carries us through.

I am not even slightly sorry that a had the SAH, as life changed in bad ways but also so many good ways. I treasure my family, am deffinitely more tolerant of people and am much more able to see things from anothers point of view. No more snap judgements, and as I always point out to my lot when someone upsets them, don't judge too hastily, you never know what is going on in someone elses life.

I often wonder why some survive and others don't. For me, I decided it was a wake up call and to learn from it. I was very saddened to hear of a local lady who had a bleed a few weeks ago, and didn't survive. There but for the grace of God.....

Well the sun has got its hat on...sort of....what a wonderful world

xxxxxxxx

[sue]

Hi Debbie,

good to hear from you. Your experience sounds very similar to mine, my SAH was on last New Years Eve, (will def be celebrating this next one!) It was actually 4 days before I got a brain scan to diagnose the SAH. I didn't have surgery either .......no known cause.

I was 56 when it happened (now 57) Have 3 grown up kids and 8 grandkids, like you I was always a bit of a multi tasker, always on the go doing loads of things at any one time, I came out of hospital on 14th Jan and can honestly say my recovery is going well but I know beyond doubt that I'm not the same as before!

I honestly think its only over the past couple of weeks that I have come to an acceptance of whats happened to me (I prob think i've been at this point before but I haven't)

We've had lots of stuff going on that I would've sailed through pre SAH but now...... well, now I have to take a bit of a back seat.

Fatigue and poor short term memory are the major things also lack of energy, I was previously really fit and loved power walking and swimming but thats on hold for a while although I have taken to walking again about 3 times a week just not as fast or as far as before.

I don't do as many madcap things as before, but hey, maybe I shouldn't do cartwheels at my age anyway???

All in all i'm doin ok really, my house doesn't get as much attention as it used to, had all my grandkids here for lunch yesterday and whereas before I would be gettin everything put back to normal once they had gone, now I leave it a bit and do it in my owntime.

Anyway there is bound to be something i've forgotten to write, or I may have totally gone off at a tangent I don't know.

Love to you anyway,

Suexx

[Guest Cathy]

Hi Debbie,

I know how you feel and maybe you have asked the six million dollar question will we ever be 100%. I think the answer is we shall never be 100% of the other person we were but a good new person. I agree with the others it might not be what we want to be but thank heavens we are here. Take each day as it comes and do what you can. It is very hard to accept it but it helps when you can. Sleep is a good tonic and you body tells you when it has had enough.

I tried to lay two pieces of turfs at the weekend and I felt I had done a 20ft by 20ft patch. It seemed so much harder this time than what it was before my SAH I have realised maybe not something I can do or want to do again

I feel for you because no bandages means to others no condition but you know that is not the case. It is difficult when you have to 'prove' you have a condition. You stand by how you feel if when you go for your interviews take someone with you, make notes, explain your condition and the person who is with you can speak on your behalf. DWP can advise you about permitted work etc but you can not be forced to do it. It is I expect not something your adviser has come across too often so doesn't have the knowledge. Just be patient and keep on explaining. Sorry to prattle on just hang on in there.

I live in Devon too not far really from you small world really

Take care,

Molly

[Blondie]

I think Molly made a great point about being a good new person, I know I quite like the new me in lots of ways. I definitely don't think any of us will be the same as we were before - but we would have changed over time anyway, so maybe we're not as far off target as we feel sometimes.

I saw a copy of a letter from my consultant to my GP today (from 2006) where he said I was experiencing "the common symptoms post-SAH, such as headaches, nausea and slight personality change" - the only bit I think he got wrong was "slight"!

I'm with you though Debbie in that I'm not sorry I had the SAH - for me there were a lot of positives too.

Good luck Debbie, Blondie

[Louise]

Hi there

Sometimes people are surprised when I say in many ways the SAH was a good thing, - ok so I would rather not have had it but I did & there's no changing that, I changed totally which for me was a good thing I used to be so quiet.

You said: I often wonder why some survive and others don't. For me, I decided it was a wake up call and to learn from it. I was very saddened to hear of a local lady who had a bleed a few weeks ago, and didn't survive. There but for the grace of God.....

I have thought of that too, last year especially when Ronnie's cousin died she was 18, I had done a lot of soul searching before that it brought it all back to the surface again then months later I fell upon this site & hey.....

But you're right 'There but for the grace of God go I. Said that many times.

Well catch you later.

Louise.xx

[Sasbo]

Hi Debbie

All I can do is echo what you and everyone else is going through. I had my bleed last September, clipped, and have a second aneurysm which will be clipped this September. Definitely changed me and a lot of things for the better - I now take time to stop and smell the coffee, appreciate everything and everyone around me and thank God that I'm still here and relatively OK. Things could've been a lot worse!!

Also, animals are a great therapy - we have 5 cats and have just got 2 adorable pups and they all let me waffle on at them with my verbal inanities and don't answer me back!!! Well recommended........and they don't mind when I get my words mixed up!!! They appreciate the double feeding too (well, I can never remember whether I've fed them or not, and they don't help me out....)

Like you I sleep each day, can only manage one major task without worrying and getting stress headaches, and keep copious lists - can't manage without my list book!

But life is good - we're here and we've all found each other to be able to sound off at which is the best therapy there is.

Good to meet you and welcome to our happy band.

Sarah