Macca

Hi,

Welcome to BTG.

Everyone's rate of recovery is different.

Change happens - it's how you deal with it, and adapt to it, that counts.  With positive attitudes like yours, you should do very well.

Just let your bodies recover in their own time.

Best wishes,

Macca

Hi Victoria,

You need to sit that guy of yours down and have a heart to heart with him.  But before you do it, prepare what you want to say well.  Make the things that have the most impact be at the top of your list because first impressions last and stick in the mind the longest. If he stops listening, at least you will have got the most important bits through to him!

As for the way you describe yourself, I think you should be more positive.  You sound browbeaten and at your wits end.  You are still you.  Ok, your body may have had a bit of a rumble, but you are still here still fighting and have a second opportunity at life.  And that is the word you should seize upon - 'opportunity.'  Be proud of what and who you are.

What you need to get through to your husband is that your capabilities post SAH are different (not worse) to what they were pre SAH.  That is fact.  You cannot change the past but you can change the future and how you both look at it and how you both face it - together.

His priority should be you, not his work or his boat!

Get involved in his world.  If he goes sailing, go for a ride on his boat with him.  If he goes skiing be at the bottom with a camera.  If he goes to work, ask him what he does, how his day has gone etc, or drive him to work and back again occasionally if it gets you out of the house.

Also find some things of your own to do and build your own life and interests so that you are not constantly depending on him.  You can find things to do and people to meet and be friends with.  It's not about being his version of 'normal,' it's about being your new version of 'normal' and you have to make that as good as it can be.  Try and develop a bit of fire in your belly for new interests and passions. Please don't dwell on the past, it's gone.  Don't think what you 'can't do' - think what you 'can do.'

It isn't always easy but it is a challenge you can face up to.

Life sometimes is what you make it - so make it yours. Stop looking at it as what he wants - what do you want?  What opportunities can come your way?  Look for them and take them up.

I hope this doesn't sound too harsh, just go on the attack a little bit and look at things in a more positive way.

I have been in your position - in despair - but you must face it and tackle it to overcome it.  I hope this helps.

Always here to help if we can.  Have a rant, ask questions, look round this site.

Please let us know how you get on.

I wish you well,

Macca

I am with your husband there!

However, one thing I would do, before you do anything rash, is to educate your people in that hospital about SAH.  If you leave without doing this at least, then you are simply deferring the problem for the next unfortunate person that suffers one.  I wouldn't wish a SAH on anyone, but if I did, your guy in HR would be top of my list - then he would understand!

If you left completely, your hospital loses all that training, knowledge and experience they've invested in.  How myopic of them to risk that.  Could you not simply cut your hours?

Your husband could be right about stress.  It can't be measured of course, because it is such an individual thing, like asking how long is a piece of string, but if you can relieve some stress, then that can only be a good thing, can't it?

Make your own decisions and in your own time - when you are ready.  You must do what you believe to be right and in your best interests.  You and your family must come first.  There are other jobs, but there aren't other families.  Just get your priorities right.  Work to live - not live to work!

Best wishes,

Macca

Hi Myra,

Talk with the consultant that treated you for the SAH and get a letter from him/her that tells your hospital your expected recovery time that will enable your return to full time work.

I find it hard to believe, and stomach, that a hospital, of all places, should show such a lack of compassion and understanding of the recovery issues surrounding a SAH.  It smacks of some HR nerk who has no understanding or medical knowledge seeing you on your feet and thinking that you are ok because they can't see a plaster-cast or a limp or a missing limb.

It absolutely beggars belief.  If you are a nurse, I would floor that guy with all the medical research I could muster and tell him/her to come back to me when (s)he had read it all.

Unbelievably crass.  What they are doing, if they stop to think about it is putting you at risk, their patients at risk by making you return to duty when you are not ready.  Further, if you were to do something wrong, or something happened to you, I wouldn't like to be on the end of the lawsuit that followed.  Keep a diary, of everything and who said what - verbatim if possible, and when and to whom.

I wish you well.

Macca

Don't you dare stop asking questions.  This is so important, that you get the answers you both need and deserve. 

If they want to stop you asking questions, then they need to give you the answers to them.

That's the best and only acceptable way and that's the way you should think about it.

Macca

And don't forget to tell her you love her!

Macca

That's good news - and if she recognises you that is brilliant, especially at this early stage.

Just give her time and be there for her when she needs you.

Macca

I would get your diagnosis from a professional doctor before you travel if I were you.

You will need travel insurance if you are contemplating going abroad, and if you declare your current state, where you do not know what is wrong, then you might not get insurance.  If you get a diagnosis and declare that, then you will get insurance but it will be slightly more expensive than normal insurance with no health problems. If you make a false declaration then any insurance company will refuse to pay out.

If you travel without insurance and something happens you will be left to pick up medical bills and the cost of getting you home yourself.  That may place a burden on you but also members of your family.  Do you really want to take that risk?

Hi - I was in a coma for a week and in a  High Dependency Unit (you might know that as intensive care) for another week after that.  I know that in that second week people were talking to me but I was not able to respond at times.

All procedures are invasive and remember this is the brain we're talking about so it isn't to be taken lightly.  Nevertheless, your Momma is in the right place at the moment and her doctors have her in their care and are looking for the best possible outcome for her.

Going in through the groin is certainly better than a craniotomy if it is possible to do it that way so there is reason to be optimistic.  However keep talking to the doctors and get a feel for how your Mom is doing from them.  They may well help to put your mind at ease.  Many of us on this site have been through these procedures and we're still here, but it takes varying times to recover from.

You need to be patient, as all brain injuries take time to recover from, and all bodies go at their own pace - what is right for them.  Keep going to see your Momma and keep talking to her whether she responds or not.  Read her short articles from a newspaper or her favourite magazine if you are struggling for something to say.

And above all, tell her you love her, every time you go to see her.

I wish you well,

Macca

Hi Sharon,

First of all, welcome to BTG - glad you found us.

The first thing is to say that he is home and you must be pleased about that because many of us were in hospital for longer periods before being allowed home.

Your husband is probably wondering what hit him and it has floored him.  He will be a pent up mixture of emotions at the moment and he probably can't explain it himself yet.  The things you describe are quite common amongst those who suffer SAH.  Hopefully, over time things will calm down as he comes to terms with what happened.

He will be realising, much against his innermost thoughts, that he cannot do what he took for granted before.  That will be upsetting, will make him angry, will frustrate him.  The main reason is that he can't control it and at the moment he can't do anything about it.

The main thing is for him to rest, and rest properly, at the moment and allow the brain and his body to come to terms with what has happened to him.

Over time he will learn to do a lot of what he did before but, perhaps, in a different way. 

Time seems to be the biggest healer in all of this.

I would say to you to keep talking to him, understand that although he may look the same as he did before, his inner workings have suffered a big blow that you cannot see in much the same way as you can't see a submarine but you know it's there.

I don't know about the pain at the bottom of his back so you need to see a doctor about that.  It might not be related at all.  Did he have a lumbar puncture?  If he did, then perhaps that pain is an after effect and it may subside again over time.  The pain may account for some of his frustration and irritability so seeing the doctor is your best bet, as we can't give medical advice, not because we wouldn't want to, but because we are not doctors and, therefore, are not qualified to do so.

It is very early days for your husband and I did all of the things you describe when I came out of my coma, but I am largely ok now, so there is hope.

I reiterate that time and your understanding are two of the best things you can give him right now.

Patience is a virtue and although what he is doing at the moment is probably a little unpleasant to handle currently, he can't help it or control it, so the best thing to do is to give him the time and space to work through this in his own time.  You be there for him when he needs you, even if he doesn't realise it himself just yet.

When he is in his better moods, talk to him about the issues you have raised with us - work with him, not against him.  Realise also that he will tire really quickly at the moment, so short talks are best and then let him rest.

Also, a good idea is to keep a diary so that you can chart progress.  It's a bit like when you see somebody after a period of time and you say "Wow you've lost weight" but if you had been in their presence all the time you wouldn't have noticed it. With brain injuries progress comes in small steps over a prolonged period, so that diary will be a journal of his recovery process.

When he is well enough, ask your husband to look at this site. He, like many others, will benefit from it I'm sure.

Let us know how you get on.

Best wishes,

Macca

Sophie,

I am hugely disappointed at the way you have been treated.  It simply isn't good enough.  I do think, though that you should have stayed until a consultant saw you.  If I were you, I would go back but only you can make that decision.

I also think you should complain in writing to your local health trust and copy in your local MP - enclosing a copy of your SAH letter and detailing the wretched way you have been handled.  Send them by recorded delivery so they can't say they haven't received them.

If there is even the slightest change in your condition - get back to the hospital, blue lighted if necessary, but get there.

Sophie, you've stuck it out so far, just hang on in there.  There are no answers at home and you will absolve them of all responsibility if you don't stay.

We're all rooting for you and we want to know the answer as much as you do now, so hang in there - please!!!

Sophie the others are right - yes the wait is irritating but at least you will get seen today.

Your well being is paramount and if your headaches are getting worse as you say, you are in the best place. 

If you were at home you would still have headaches but there would be no-one there who could sort them out for you and no end in sight.

There, you have help right by your side even if you have to wait a bit. 

Sit there and don't go until you have been properly examined and make sure you spell it out for them what's wrong with you.  Don't ask them to guess - tell them!

Best wishes,

Macca

Sophie,

Don't debate it - just go and get it dealt with.  You'll just be worried until you do and surely it is better to know for sure than to keep wondering.  It is their job to find out what is wrong, so don't be shy just go.

Your health is the most important thing here.

Please, just go - why wait until after work?  Work will still be there when you get back and your health is vital.

If you don't you may be off for longer than if you do go - so go and get it sorted!

Macca

Hi Sophie,

Welcome to BTG.  I think you are jumping ahead a bit here. 

First of all, you need a definite diagnosis of what is wrong before you can answer all of the questions you pose.  I would guess sinusitis is a heck of a lot different to a SAH but your doctors need to tell you this, not us.  We are not medical people so we can't help with your diagnosis or help with medical questions.  That's what doctors get paid for. 

Pressure headaches and sensitivity to light, short-term memory issues and the like are common to SAH sufferers.

All the questions you pose in your last paragraph are ones for your doctors to answer as in every individual case.

I can say what happened to me which is that I fell into a coma, was operated on and was coiled.  I had a bleed on the left anterior communicating artery, not in the brain itself. I was on various tablets for a while but am not on any now.  I can and do travel abroad, although I declare what happened to me on my travel insurance.  It adds to the cost a little bit, but not much unless going outside Europe.

Sadly, I don't know about having babies but maybe one of the ladies might answer that.  However, I would say get your diagnosis and see what can be done about it before you go worrying too much on that score.

Hope this helps.

It's called "A Letter From Your Brain."

Here is the link:    http://web.behindthegray.net/index.php?/articles.html/inspiration/a-letter-from-your-brain-by-stephanie-st-claire-©1996-r167/

If it doesn't work for you, go to the yellow band at the top of this page, hover your mouse over 'Support Information' and 'Inspiration' should appear.  The article is in there.

Hi Jennifer,

My doctor once told me it was like having a puncture when you ride a bike.  One minute you were fine, then you had the puncture.  You repair it and go on your way and it's more likely to happen to someone else next time, than you and eventually it kind of goes to the back of your mind even though you never forget it completely.

What he said has always stuck with me - and he was right.  I had my bleed 6.5years ago and counting.  So put it in context like he did, and I now have, and go and live your life with confidence.  After all, you cross the road every day and that's a risk too, isn't it?

Think of the picture in your mind as a computer screen.  Now minimise it and look at the picture behind as the new life opening up before you.  Not so scary now, eh?  Your fear is now in that tiny box in the corner of your screen, dwarfed by the magnificent expanse of the new picture in front of you!

That's how I think of it.  Hope it helps.

Macca

Hi Robert,

You were already getting lots of good answers - I wasn't sure at first whether I could add to them, but then I could almost see you reaching out and I knew then I had to say something.

It seems you have accepted you have a problem or two.  That is good because in doing so you are on the way to beating them.

You are already reaching out. It's just another little step to do it some more.  You must help yourself before you help others.  The best help comes from the strong. Let us and those around you help you find the new you, find your feet.  Get yourself well first. 

There is no rush - it isn't a race and you must go at your own body's pace, not what you think you want to do!

The positives will have the ripple effect on your partner and children and others close to you and they in turn will reciprocate.  It will be a kind of push me pull you, where you keep making progress - together.

One other thing - quality rest is as essential as your active life.  Being in good spirits when you work is vital to good decisions and quality work, so listen to your body.  Learn to delegate more.  Being able to be active with your kids when you get home is also important so don't wipe yourself out entirely at work.  Get a good night's sleep.

Enjoy the book.

Lots of good advice from the others above- we've got the t-shirt and the dvd!  We've travelled down your road - it isn't easy but you will surely find many of the answers we have, in your own time.

Good luck,

Macca

Hi Robert,

Welcome to BTG.

I wasn't going to reply or join in with this but in the end I couldn't resist.  The opinions I give below are entirely mine and I base them on what you have said, and your style of writing, and your responses to others above.  They are given with the best of intentions, but I hope you can get something from them, even if you don't agree, if only you get some clarity on how you see things in order to move forwards in your recovery.

Please don't keep beating yourself up about this. I have identified a number of issues here and I think to help your understanding, it is better that they are broken down to help you find the appropriate answers.

1] You were badly assaulted.  Even without a brain injury, this was a very traumatic event for you and is difficult to get over.  You will have had a mixture of anger, upset and shock.  You will have replayed that incident in your mind a hundred times and more.  Shock usually kicks in after the event when your mind starts to wonder what might have happened, over and above what actually did happen.  Stress builds because of that, in my opinion.

2] You suffered three injuries - two haemorrhages and a fractured skull.  Any one of them on their own is a major trauma which could take a long time to get over, let alone having three to deal with all in the same time frame.  Everybody on this site, just about, recognises that brain injuries take time to fix and that there are no instant answers.  We have to accept that and so we have to adapt.  Change happens, it is how we deal with it that matters. 

3] You probably went back to work too soon.  Not easy for you and not easy for your family, but I bet you wouldn't be told.

4] You took on a more pressurised job when really you needed a time-out to attempt a proper recovery before attempting to move on.  Looking at it from outside, you probably set yourself back a bit there.

5] With more pressure, your relationships with your wife and children took a bit of a hit.  These are the most important - not your work.

6] With some of the therapy sessions you probably went in too early and took on too much.  It sounds to me, from your own words, that maybe you were still railing against what had happened to you and were not receptive at that time to those trying to reach out to you.  In therapy you said you felt insulted.  For you to engage, it is vital that the therapist fully explains the aims and objectives of the sessions in great detail at the beginning - and with brain injury at the beginning of each session - for you to get the most from them.  Did you fully listen to the therapist or was your mind still arguing 'Why am I here?' with itself?  Had you come to terms with your injuries and accepting that these incidents had happened to you?  Or were you still fighting them?

7]  Is it too late to go back and admit you were perhaps wrong to leave the sessions?  Reach out to those trying to help you.  In my experience, they are always willing to reach out to those who are prepared to help themselves.  It isn't a matter of pride - it is a matter of getting you well again, and cognisant of the fact that you need help to get well again.  All of us need help at various times, you are no different, and at times you will reach out to others in the future.  You cannot change or control what has happened to you in the past, but you can accept it and then alter what happens to you in the future.

8]  A big issue for you seems to be recovery time. Let me tell you that, currently, you see time as your biggest enemy, because you want to be like the old you as soon as possible.  Sadly, with brain injuries, the reality just isn't like that.  Time is therefore your biggest friend, not your enemy.  You survived, and so time is what will allow you to address all these issues but one at a time, not all at once.

Time is a healer, but it needs help from you, your wife and children, your friends and your work colleagues.  But you have to let them. Talk to them and interact with them.  Do it in short bursts and let them know when things are becoming too much and you need a break before resuming.  They will be as distressed as you are but if you let them help you they will respond.  If your bag of shopping drops on the floor, you pick up the items one by one, you don't try to pick up all the items together because you will keep dropping things again.  So pick up your issues one by one, methodically, and put them in the shopping bag that is your life one by one.  You will find it easier to deal with things that way.

9] Your job is obviously important to you, but your family are more important.  Your kids don't care what job their Daddy does.  You could be a street sweeper (no dis-respect intended) for all they care  They want a happy, relaxed, Daddy that comes home to them at the end of the day, to talk and play with them and read them a bedtime story.  If you have a Mercedes, they wouldn't mind a Mini - as long as their Daddy, the best man in the world, is the driver.  They don't want to see Mr Grumpy.

10] Stay in touch with your doctors and therapists.  Their guidance will be vital in your recovery.  Work with them, not against them.  You cannot be an autocrat when your result depends on what they do - you need them onside.

11]  Pride comes before a fall is the old saying.  It is also the wrong emotion, in my opinion, to have in this circumstance.  What you need is dignity and you have that in spades.

There is no disgrace in getting or seeking help from others. Your parents helped you when you were growing up.  Your teachers did, too.  If you ask help from others in getting things done at work, what is the difference in getting them to help in your personal dealings?  The answer is 'none.'  The only thing is your perception.  In fact, there is a lot more respect to be gained in reaching out than in trying to go it alone.

What you are probably finding is that you are like two north or two south poles of a magnet - repelling each other rather than working together to attract each other and dealing with the problems that currently, that you see, blight your life.

12] Stay in touch with us Robert. We have all had brain injuries, or know someone who has (in the case of carers). Accept that the injuries are there and nothing can change that.  Resentment is a wasted emotion.  The best way to fight this is to get better and you can best do that by using all the resources (doctors, nurses, family, friends and colleagues) at your disposal to get well.

Help us to help you.

I wish you well,

Macca

Helen,

Many congratulations on reaching four years, I'm only two in front.  I'll race you to ten!

Looking at it another way, you say you mourn the old you that you lost - but hey! celebrate the new you that you found!  And you found us, and you're still here, so it can't all be bad, can it?

Have a fabulous day - onwards and upwards!  Well done for getting this far!

Best wishes,

Macca

Hi Cassandra,

I'm sure you will get some answers.  In the meantime, try to stay positive - at least they appear to have identified one of your problems and they can do something about it.

Good luck and best wishes. Please let us know how you get on, we'd love to hear from you when you are able.

Macca

Hi Myra,

Welcome to BTG.

Lots of good advice from the others above.

Just a thought - have you ever considered putting your new-found knowledge to good use on a ward where people are recovering from brain injuries are?  A nurse, like  you, who really does understand what it feels like and has first hand knowledge of recovery issues would be like finding gold dust on the Oregon Trail.  Nurses with such knowledge are, indeed, rare and the sympathy/empathy you can provide will be invaluable to those patients.

You could also advise them about BTG where support is always available, not just for the patients but their carers too.

I hope you are recovering well and continue to make progress.  Please don't go too fast, too soon.  Progress is progress no matter what the pace.

Best wishes,

Macca

Hi Cassandra,

First, welcome to BTG!

My aneurysm was 6.5 years ago now, at the age of 53, and was a ruptured 'left anterior communicating artery' that was irregularly shaped and difficult therefore to coil - but luckily for me they finally managed it!  I was in a coma for a week, they had three goes at a lumbar puncture, calling in a top consultant to have a 'last go.'

I'm still here.

My pituitary gland was damaged whilst they repaired me. The gland stopped producing growth hormone and as a result left me with chronic fatigue.  I was given various scans and blood tests and tests for hormones and eventually after nearly three years they identified this deficiency.

In the meantime, I was suffering with chronic fatigue, sleeping up to sixteen hours a day and when I was awake I just wanted to go back to sleep again and felt I had no strength in my muscles.

I am now on HRT, (yes you heard right, a bloke on HRT - remember the song 'Man I feel like a Woman' by Shania Twain?).  I have daily injections of Growth Hormone (a substance that athletes would be banned for). In my case though, the improvement in my quality of life is immeasurable. 

I still have fatigue, so it isn't the complete answer, but it isn't nearly as bad as it was - but I'm still here and my recovery is probably around 95%, so I am grateful for that - after all, it could have gone the other way.  I also still have short-term memory loss problems, but I have learned to manage these.

So, the way I look at it now is that life is for living and every day is a bonus, the sun still comes up, and there are people far worse off than me.  It doesn't rid me of my problems, but it does set them in context.

Time is the biggest healer.  Remember that the brain is incredibly complicated (although my wife disputes that in my case sometimes!) and it is at the centre of everything you do.  It has taken an enormous knock but it is still functioning well and, by your own realisation, is improving incrementally.  That is progress and is brilliant.

Your rationale, in your post above is spot on, so no problems there - that's good, isn't it?  Most of us are improving, years down the line, at different rates depending on our own bodily constitutions and the severity of the problems we encountered.

There is no single answer, but we have hope and we have belief. 

We also have records of improvements over time, as you are finding out now.

Yes, it can be unpleasant whilst we endure, but for every knock we take, the flip side is that there is also an opportunity.  That is to look at the problem in a different way, to find a new way of beating it, to re-assess our current values and way of doing things.

Try not to read too many of those academic papers.  Usually, I find, they are very narrow in scope, leave you dissatisfied and with a whole new range of other questions. Often, you have to look at what they don't say rather than what they do.  Their sample audiences also vary enormously (in terms of age, gender, ethnicity, socio-economic groupings and so forth, and are quite small.).

So, keep your chin up, keep battling and keep challenging your doctors for answers.  Don't be shy, it's what they are there for.

Please keep us posted on our progress and if you've got a problem, we will help you if we can -  we just can't answer medical questions. because we are not doctors, which is why I said what I did, above.

I wish you well,

Macca

Hi Renfield,

I want you to go back and read your introduction post again.  Why? Well, because everything you describe is progress after being more ill than you at first realised.

I suspect that because you are on your own you are just not recognising it as such.  That is not a criticism, just an observation.  Whilst I respect and understand your wish not to mix with people too much at the moment, you have no one to bounce your own thoughts and observations off.  They would probably tell you how much you have come on since your operation.  Let me explain.

1) You identified a problem and went to get it sorted - well done!  It obviously needed seeing to.

2) You came home

3) your scabs from your operation have almost gone.

4) Your sideburn is growing to cover the evidence of the operation

5) You don't have to resort to pain relief - or rarely, are the times between getting longer? I bet they are.

6) All your faculties are in tact - a big bonus after a SAH, believe me!

7) You  are doing several chores/activities a day

You are about to start doing short walks, that's progress.

All of these things are small steps on the recovery road, things that many of us have been through ourselves.

When you do start driving again how about doing short drives until you can cope with longer?

When you have to go to the mainland, instead of thinking of it as a travel chore, why don't you think of it as a short break, where you have to take in a visit to the hospital on your journey to being completely well again.  I am not trying to be patronising, just trying to get you to think about it in a different way that helps you.

So, don't beat yourself up, it sounds like you are doing just great, but there are no instant fixes.  Time is the great healer here and the thoughts you are having about doing more things shows that you are not apathetic about anything.  Just the opposite in fact.

Look at what you are not saying (ie read between the lines), as well as what you are saying.

Best wishes,

Let us know how you get on - and welcome to BTG by the way!

Macca

Hi Suzanne,

Welcome to BTG.

Your husband returned to work remarkably quickly.  I returned after six months on a phased return but it was still too soon.  I too suffered from fatigue, in fact I still do but not to such an extent.  My SAH was six years ago.  Is it time you both took a holiday in the sun to communicate, re-charge and relax?

Tell him how you feel and let him tell you how he feels.  It is important that you both understand the others position and feelings, so please be honest with each other.  Can you get him to read this thread you have opened and plan your way through this together with love and support on both sides?  After all, his SAH affects both of you and those around you.

It sounds like he went straight back into it full time, almost as if nothing had changed, because that is the way he wanted it to be.

He has to acknowledge that what happened was very serious and treat the condition with the respect it deserves because although he is back up on his feet, he is still undergoing the physical trauma associated with a SAH.  Think of it as an earthquake followed by the aftershocks.  You are far better working with the condition than against it.  Only then will he make progress and really get back to something like what he considers 'normal.'

If you pretend nothing happened, your body has its own way of telling you that what you are doing now is too much and it will seem like taking two steps back rather than one forward.  This is not a criticism, just a person speaking with the experience of having lived through a similar situation and having to sit down and re-appraise life when I really didn't want to accept there was anything wrong.

First, if I was you, I would persuade your husband to go back to your consultant and ask to check that there is nothing wrong.

Second, I would re-appraise my lifestyle, including the type of work, number of hours worked ie; whether I could reduce my hours, have more regular breaks, work part - time, delegate more to others and so forth.

Third, are there any bad habits to cut down on, drinking, smoking, late nights etc.  Perhaps go to bed an hour earlier so your husband gets a good night's sleep, especially if working the next day.  Resting well is as important as eating well and embracing a generally healthy life-style.

Work to live, not live to work!

I hope this helps. Please let us know how you get on.

Macca