Macca

Sub,

Hope all goes well for you both this week!  Good luck matey!  I'll be thinking of you.

Macca

Hi Heather,

Welcome to BTG.

After her SAH, the tiredness isn't tiredness -it's fatigue and there is a big difference.  No she isn't lazy, after what she has just gone through, her body will take a long time to fully recover.

Please don't push her at all, she needs to take things in her own time and being under pressure will almost certainly set her back.  She needs support not pressure, she needs to take her foot off the gas!  She may well have been a Grade A student, but her priorities have suddenly changed as a result of this SAH.  Her No.1 priority is to recover.

A brain injury is about as serious as you can get.  Forget studies until she is a lot better and stronger.   Often with SAH short term memory is affected and if she tries to study with that problem she will make herself worry because she isn't retaining what she is trying to learn.  Please take that pressure off her.  She can study later if need be but not at a hell for leather pace.

Working hard is a no-no at the moment.  Let her get better.  You owe her that, she has probably been working hard to please other people as much as herself, probably too hard.  Now is the time to ease up or she will suffer setback after setback.  Getting back to 'normal' whatever that is, is a long slow process and you, and everyone around her, need to recognise that.

The injury she has is deep seated and not visible to the naked eye.  It is easy for people to mistake that for being better and fully recovered.  She will take a long time to recover, please allow her the space to do so.  I am not being critical, but those of us who have been there know how difficult this is for your girl.

Being young will undoubtedly help her in the long run but pressure is, in my opinion, one of the last things she needs right now.

She's come through a tough time, let's make the future a little easier for her - please.  I know this sounds blunt, but she's precious and deserves nursing and nurturing until the rose blossoms again!

Best wishes and please keep posting and let us know how she is getting on.  I wish you both the very best of luck.

Macca

Hi Cat,

A big welcome to BTG!  First, realise that now you have found us, you are not alone.  People on here will help you as best they can with understanding and practical help and advice where possible.

I had my SAH on 1st September 2010.  I remember virtually nothing of the rest of the year and well into 2011.  I was in a coma for a week and when I woke up I thought it was the same afternoon as when I went in.  It's a long, slow journey, with a beginning, a middle and an end.

They had to teach me how to put the kettle on, how to make a piece of toast.  They asked me some questions and I gave stupid answers.  For instance, they asked me who the prime minister was.  I said "Jeannette."  I don't know anyone by that name.  There were two women by my bed and I asked who they were.  One was my sister and one was my fiancee (now my wife).  I hadn't got a clue who they were at the time.

They asked me if I thought I could get up and walk.  I asked them what 'walk' meant.  Initially, I was only awake for a couple of hours a day, with no pattern as to when those hours were.  Four and a half years later I am still here and functioning.

What I am saying is, it is still very early days for Mum.  I was still very frail six months later but improving every day, little by little, bit by bit.  What Mum needs right now is time and the strength of your support for her.  Give her it.  her doctors will give her the medical support, but she needs the strength of those closest to her, to know they (you) are with her and that she is not alone.

She will be confused, frightened and bewildered at the moment.  She needs your reassurance and support.  You can best help her by being there for her and by exercising patience and tenderness until her own body recognises its time to slowly improve.  Every day is a bonus and every improvement a milestone.

It is very difficult for you, I know, because what you are at the moment is frightened, because your rock has suddenly slipped.  Now it is your turn to be there for your Mum, just as she has been there for you all of your life without question or conditions.  But carers need support too!  That's us!

Give her that time and support Cat - she deserves it and more than that, she needs it.

If you need support, then we are here for you!

Good luck and keep in touch!

Macca

Hi Greg

Welcome to BTG!  Some great advice above so I won't repeat it but  I will add to it with this.  What you have been through is a traumatic event, a serious event that affects the very core of your being.  It will take a long time for you to recover properly.

Your body is telling you when it's had enough and it's time to rest, so please listen to it and adopt a gentler pace when it does.

Second, people will be inconsiderate towards you because they can't actually see what's wrong with you - so you have to explain, and keep on explaining what has happened and why you can't do what you did before.  It's an educational process.   Friends and family will understand but others will not, so fly the flag and tell them in absolute certainty that they should not place unreasonable demands upon you.

Over time you will gain in strength and capacity but you must get to that improved point at your own pace, no-one else's

Good luck

Macca

That's a sensible approach Alison.

Maybe you should discuss things with your employer to forge a way forward rather than just leaving it and hoping for the best.  I find it's always best to engage with people.

Good luck and let us know how you get on.

Macca

Hi Gemma,

Welcome to BTG!  I can't remember when I was 27 - I'm double that plus 5!!!  Slowly slowly should be your motto until you recover properly.

After SAH your body may trick you into thinking you're feeling great, then let you know in no uncertain terms that you are going too fast for its liking!

Take your time, if you must go back to work do it on a phased return and take regular breaks.  Try not to travel long distances and don't do any overtime or homework marking!

Keep a diary so you can chart your progress.  Short term memory may have been affected and fatigue is common amongst us.  Don't get upset or angry if you can't  do some of the things you used to do before - just find another way and congratulate yourself for doing so!

Don't underestimate what you have been through, it was tough and you need proper reparation time!

Good luck 

Macca

HI Alison,

A very warm welcome to BTG!  This is a British based group but there are members from all over the world!  So borders are irrelevant in some ways.  There are very different medical systems of course from country to country and we can't give medical advice.  But we can re-count our own experiences.

The question we all ask ourselves is "What is 'normal' anyway?  It's different for everyone.  Someone will have experience all or some of the things you mention, but the brain is complex and creates many moods and swings and situations.

But there's always someone on here that's experienced at least one of the things you say and if we haven't then we're all ears until we get to grips with the new one!

What I would say though, is if you are worried, don't be shy, go straight back to your doctor or the hospital that treated you.  Other than that we're always here as a source of support and guidance.

As to why, I think it's possibly just a general weakness in your system that blew a gasket!  There are theories that stress can help to bring it on, but there is no way of measuring stress because it is different in everyone, just like this condition.  So we can't definitely blame it on stress!  Who knows.  The fact is, it happened, and we have to pick ourselves up and get on with things (that sounds terribly British doesn't it?) until answers are found.

Although the bleed happens, it's effects are wide ranging and long lasting - sometimes life changing, sometimes not.  However, the trauma affects everyone differently too and some need more support than others.  That's why we are here, for you, for me and for everyone who needs us.  

Glad to have you on board and we'll watch out for your posts.  The road to health is a slow one, it's not a race, so you are the tortoise not the hare!

Good luck Alison!

Macca

Good luck Debbie, you have every reason to be optimistic. When you think about it, more so than if they had not!

Macca

You're very welcome!

Macca

Hi misskdk,

Welcome to BTG!  The road to full recovery is a long one.  As you've already pointed out and found out for yourself, the new you isn't always quite the same as the old you!  That's not to say you should be downhearted about it.  There's an opportunity to discover new talents and new ways of doing things you used to take for granted.  It will make you more appreciative of the things you hold dear to you that you previously didn't think twice about.

I take my hat off to you going back to work so quickly, indeed you are lucky that you are healthy enough to be able to do so.  There's one thing to appreciate straight away, as others are not always so fortunate.

You may well experience many things, fatigue, headaches, light sensitivity, a dislike for crowds and so forth, but that is the road to recovery.  Everyone who has had a SAH takes their own time to travel this route, so good luck with your recovery.  It continues well into the time after you resume work, and it can have several steps back sometimes before you go forward again.  That also seems to be normal.

Always look on the positive side, though, as you seem to be doing.  You're not the same as you were before, not better or worse, just different.  Enjoy discovering the new you until you are, once again, comfortable in your own skin!!

If there is something you can't do now, that you once could, then look for a different way, you'll be amazed at how creative you can be!

Good luck!

Macca

Hi Clare,

Good advice from Skippy above.  I'm sure others have come across this problem, but the advice from here is always the same.  Go back to your doctor or the hospital.  Just because it might be ok for someone else doesn't necessarily mean it will be ok for you.  You don't want to take chances.  Russian Roulette is for Russians, not us! (and not Russians who have had a SAH, I might add).

If it is causing you trouble, go and see them, don't be shy, just get there and get the problem identified, or the worry will get to you as well!

Good luck, let us know how you get on!

Macca

Hi Brenda,

Welcome to BTG.  Yes, sleep is a common problem but it isn't the end of the world.  It comes along with fatigue.  In some people it gets better over time, others adjust to how it affects them individually, but it is a facet of life after a SAH.

Maybe over time the jerking will subside.  If you are really struggling to the point where it is affecting your quality of life, go back to your GP or better still the hospital where you were treated.  They can sometimes point you in the right direction!

Macca

Hi Debbie,

Welcome to BTG - as you can see everyone is rooting for you on here and you have every reason to be optimistic.  In answer to your question, I don't think age has much to do with it - there are younger and older people who have suffered this and recovered.  I was 54 when mine occurred and I am 59 now!

I am glad you found the willpower to stop smoking - that can only be a good thing so well done for that.  It will improve your health and your bank balance!!

Let us know how you get on, glad to have you on board.

As you can see this affects people on both sides of the pond but we all cross the bridge with our experiences and help each other!

Macca

Hi Roy,

Welcome to BTG - I live just north of Manchester!  Still as drab as when you left it I suspect Haha!  Well it's raining anyway.

I look forward to hearing about your story soon and lots of people will recount their experiences to you!  Good luck!

Macca

Hi Sammy,

You are very welcome!  Go and enjoy yourself.  You have every right to, and deserve to, after what you have been through!

Macca

Sammy,

I have flown many times since my SAH, both short and long haul.  It really is ok.  Cabins are pressurised so there is nothing there to alter your condition no matter what height you fly at.

Make sure you are adequately insured for your trip and that you have declared your condition and the medication that you take, if any.

Also make sure you have a European Health Insurance Card if flying to Europe - You can apply on-line at Gov.UK

If you do take medication, make sure it is in your cabin luggage, not in the hold, just in case you need it and also so there is no chance of it going missing.  Your doctor or hospital can give you a letter to show as you pass through security at the airports.  There is no problem anywhere I have flown, including Spain, Portugal, Turkey, Canaries, Cyprus, Kazakhstan amongst others.

Also ensure that if you need to keep your medication chilled that the hotel you go to has the required facilities. I usually go self catering as I know there will always be a fridge with an ice compartment so I know I can chill ice blocks required to keep my medication cool and have them when travelling.  My bag will keep my medication at the required temperature for anything up to 48 hours depending on the climate you are going to.

In my opinion, there is nothing to be frightened or nervous about.  The way I view it is that the pilot is going home for tea so I know he/she will get me there ok!

Maybe the first time you go, get an aisle seat so you can go to the loo easily.  Also, some airlines run travel awareness sessions for nervous fliers before you go and they will answer any questions you have to allay your fears.

Have a great trip, wherever you go

Macca

Hi Sammy,

Welcome to BTG!  Lonely is a familiar word to BTG'ers, even though there are lots of people around.

It's because what you have just experienced is a lonely experience and others around you have not so there is an instant feeling of isolation on your part.  It's a bit like when you go into town on your own - lots of people around but none you can talk to because they don't know you.

Now you have been in 'hospital town'  and no-one knows what you brought home!  Except fellow sufferers.  That's us!  So when you need us, we are here.

I would advise two things:

1)  Keep a diary so you can chart your progress - you'll be amazed at how much you've made.  Sometimes people think they're not making much progress, but they are.  A bit like when you've not seen someone for a while and they've grown, or lost weight  - they don't recognise the change but others do!

2)  Delay going back to work for as long as you can and when you do go, make sure it is on a phased return.  After an event like this, your body has an abrupt way of telling you that you have done to much!  Working, going from nothing to full time, will almost certainly be too much in one leap so doing it in stages is best, in my opinion.

Looking forward to hearing of your progress!

Macca

Hi,

Welcome to BTG!  You'll find plenty of support on here - simply because we know and understand what you have  experienced because we experienced it ourselves.  We're not doctor's though and we can't give you medical advice, but we can tell you what we went through and how it affected our lives and those of our nearest and dearest.

As others have already said, recovery can be, and usually is, a long process. Everyone is different in this respect but I am sure everyone will give you support, so please continue to look around the site and post when you feel up to it.  Good luck with your recovery and let us know how you are getting on!

Macca

Hi Teechur,

What a great post that is! I like that and you sound much more positive than you did when I last posted.  Hang on to that too!

Don't forget to look after yourself and your business as well though.  You need to keep your business healthy as well as yourself but it's really great that you are finding time to help someone else.  You can only continue to do that if you are strong yourself.

As we Brits would say "Jolly good show!"  I'm impressed!

Macca

Hi Janey,

Great news that you are ok.  As regards the drugs you are taking, see your GP as the others say and also read the leaflets the drug manufacturer's put in with them.

Doctors in UK (I don't know about across the pond in the US) are only obliged to tell you about the main side effects, not all of them and in taking the medicines you give your consent if you take them.. So read the leaflet in the packs and if you have any questions go back and ask about them again and especially about how they interact with each other. 

Your health is too important to take risks with!

Iola,

Fantastic news, thanks for letting us know.  

Macca

Good luck Mandy,

Bet you sleep when you get home!

Macca

Hi Len,

Welcome to BTG.

Both my first wife (mother to my two boys) and me have had a SAH.  It is best to get yourself checked if you can.  They wouldn't normally do that here but given that both parents have had them they agreed to do it.  Fortunately they appear to be ok.

The wondering would have frustrated the heck out of me if it hadn't been done, so please get it checked - it is best to know in my humble opinion!

Good luck!

Macca

Hi Clare,

Define normal!  What is normal and by whose standards? The way I look at it is, normal is what I want to do today, If I feel active, I am active, if I feel docile I slouch.  Normal is a benchmark you set your self.  Re-draw the line and take the pressure off.

Go with the flow and listen to your own body.  It takes its own time anyway.  Relax and enjoy the ride.  Frustration is only a problem if you let it be.

You have time now. Use it wisely and do what you can when you can.  I find that to be the best  approach.

Best wishes,

Macca

Janey,

If you are looking in, I hope you are progressing well.  You are in my thoughts and I wish you all the very best

Macca