Macca

The best you can do is all anyone can ask of you Gemma -  well done for the realisation, I'm sure you will do well.

Macca

Sometimes I think trying to get back to what we all were before SAH is the wrong benchmark to set.  In a lot of cases, although understandable, it isn't realistic, it is aspirational and it sets us all up to think we are failures if we don't reach it.  In fact, we are not failures at all, we are living success stories.

We lost a battle but won the war to survive and thrive with a new lease at life.

When you think about it, the SAH is only one factor that affects us in our lives.  Ageing is another factor that happens gradually, but we accept its change as we have the time to accept it is happening and adapt our lives to fit things such as not being as fit and able, starting to lose memory capacity, not being able to run as much or as fast.

The problem with a SAH is that the change is instant, nobody told us it was coming and therefore we weren't ready for it or its consequences.

Remember when you played games as children?  Somebody would shout "Go" and everybody would take off, leaving one behind. That person would cry foul and say "I wasn't ready, let's start again."

That's us as adults, affected by SAH.  We weren't ready for it and we want to start again.  However, we are dealt a slightly different package that means we have to think about using the assets we now have, sometimes having to compensate for the ones we lost.

We can't undo what has happened to us, but we can look forwards and make the best of what we have and be positive about what is to come.  Yes, we will think about the way we were, but then we have to move on, make new goals.  Not to do so will leave us stuck in the past, reckless about what caused us to go under in the first place, whereas we are now all older and wiser and able to 'risk assess' our future paths for the benefit of not only ourselves, but those around us.

Life's quality is about health and well being, not about work, status and earning capacity.  For without the former we cannot achieve the second and those latter values therefore lose their meaning somewhat.

Gemma, well done for getting this far, I wish you well.  Take care,

Macca

Xmartz,

I'm another that's been down the same road:

"You're looking well, like there's never been anything wrong with you."

"I forget things all the time."

"Pull yourself together man."

"Just get on with it, there's nothing wrong with you."

"You're tired - wait till you do as much as me, then you'll be tired."

"You should be better by now - are you just making an excuse?"

I've had all of these and more.  Change is an inevitable part of life. I've put on weight and become more grouchy at times, but it's how I am now.  What reason do they have for being grouchy?

I make mistakes but I have a reason for mine - do they have a reason for theirs?

SAH is our change and others have to accept the change and adapt accordingly or move backwards whilst we move forwards.

I like me, always did, always will.  If others do too, that's a bonus.  If they don't that's their problem, not mine!

Well done for speaking out Xmartz, I dine at your table!

Best wishes,

Macca

On your phased return keep a diary.  Note what you have done and not done, what you are capable of and not capable of.  You will need this when you have a review with your boss.  You may need to find other solutions to do things.  Having a diary makes this much easier, not only to work things out but to record your achievements.

Also record what is said to you and other people's reactions to what you do/don't do.  Note any prejudice.  I know that might sound negative, but it does happen, and by being pro-active about it you will be in a much better position to combat it - forewarned is fore-armed!

You will also be aware of what it is that makes you most tired or causes you most irritation, conversely what gives you most satisfaction.  Take it in stages, don't do too much too soon and stay in control of your own destiny.  And above all, don't let others pressure you into doing more than you can handle before you yourself are ready to take it on.

Sad, but there are others who will want to see you fail in favour of their own advancement.  When people ask you to do more, ask yourself what is their motive?  If it doesn't fit with your wishes - don't do it.

Take great care - your health isn't something to be trifled with just for someone else's targets or a couple of extra pounds in your pocket.  

Keep your feet on the ground and make your own luck!

I wish you well.

Macca

Laura,

You are welcome!

What I found annoying was people talking about me as if I wasn't there eg 'Is he ok?, can he talk?, can he get out of bed?

For good ness sake just ask me!!! was how I thought at the time.

The truth is, I didn't know the answer to some of those questions at the time, but I found it irritating when those things were said within earshot! It made me feel like an imbecile and I wanted to shout out that I wasn't one!

If you are going to talk about your Dad, do it in another room or involve him in the conversation if you are in the same room. That would be my advice.

Good luck,

Macca

Hi Mandy,

Old Sage here! (lol, that made me laugh!).  Slow progress is still progress and that's good.  I was reading at the weekend in a newspaper that in about a hundred years time they will have invented a machine that can replicate the brain's trillions of connections.

That means that it's complicated! So when it goes wrong, as it has in all our cases, it takes a while to diagnose and fix and sometimes it has to be left to its own devices to heal by itself.

With all those connections, is it really surprising that there is probably more they don't know than what they do know?  That's not a criticism, just and acknowledgement that the brain is incredibly complex?

Don't go too fast, too soon or it will set you back.  I wouldn't wish a SAH on anyone, but sometimes it is severely tempting to think about wishing it upon those who put us under pressure to return to work and increase workloads before they are ready (especially as they know nothing about SAH let alone have experience of one).

When those people, usually managers, are putting us under pressure to increase output they are not thinking about you, and don't let them kid you that they are,  they are thinking about themselves (statistics, targets and profits) and their own career progression.  

They are thinking about how they can go to their own boss in their appraisal and say that either they got you back to full capacity, or they dealt with a problem situation and got rid of you by re-deployment or dismissal, either by sacking or by getting you to resign. That is exactly what happened to me.

I could have carried on, but my situation was about a bad boss, not my condition. Six months post SAH for you is still very early days and you have already done remarkably well to get where you are - don't blow it now by burdening yourself with too much too fast!

Remember the tortoise and the hare story?  Be the tortoise!

Fortunately, I was then at an age where I could take an exit package, and with my head held high, I took it.  It was the best decision I ever made.  I am very happy now.

I know that it isn't an option for everyone, especially those younger than me.  If it hadn't been possible for me to leave, I would have found another job, even taken a pay cut to be happy.

I guess what I am trying to say is, go at your own pace and on your own terms - do what is right for you first, business second.

Macca

Happy anniversary Michelle - congratulations on reaching this milestone.

Glad you found another way to get your chocolate!  You'll find many ways to do other things as well as time goes on - it's just different, not better or worse.  Just as satisfying too, having found solutions to get the same result -  well done!!

You've captured your progress brilliantly and your post will be a motivator for others who can see that advancement happens over time not overnight!

Good luck to you and may your progress continue apace!

Macca

Hi Laura,

Welcome to BTG.  I had the problems you describe for your Dad.  My lumbar puncture worked on the third go.  I had developed hydrocephalus and a shunt would have been fitted if the lumbar puncture hadn't worked.

This is very early days for your Dad and I had little or no short term memory at the beginning.  Over time some of it came back as I think the brain has some almost miraculous way of re-routing.  However, I was re-taught the simplest tasks ie how to make a piece of toast, to hold a knife and fork, what to do with a spoon, how to put my slippers on etc. I didn't know who the visitors round my hospital bed were. So, I was right back to very basic levels

Over time my short term memory returned to some degree although four and a half years on I still have trouble retaining information unless it is repeated to me several times.

So encourage the keeping of a diary, when you speak to your Dad, repeat some things to him a couple of times but ten or fifteen minutes apart, and then the next day, so that eventually, the short-term memories become long term memories that will embed in his brain.

I am sure the hospital are doing everything medically that can be done.  Where we fit in, on this group, is in the long term social after-care that isn't present within the NHS.  So we support each other, knowing that the empathy is real because we've all 'been there.'

This is what my family did with me and it worked to a large degree - not with everything but with most things.

It is more than likely that some of his memory will return, but no-one can say for sure, but it is a long wait for it to happen.  His brain has been injured and like all injuries, it takes time to heal, and every individual is different.

So be patient, encourage, repeat things sometimes, write things down, get him to do things for himself where possible.  Memories seem to stick more if you do things for yourself rather than have someone telling you things.  Remember also that this ability to concentrate will have been considerably shortened, so small steps, manageable chunks.  Don't expect too much of him too soon.

Sometimes families put too much pressure on too soon because they want to see their loved one - back to normal - and although he may look the same, he isn't the same.  It's now a question of how much he can get back over time.  Remember, too, that this will be a frustrating and upsetting time for him and that he will require all the love you can give him, as he has unconditionally given you all of your life.

The saying 'time is a healer' is so true in SAH cases, but embrace the positives and minimise the negatives - he is still your Dad!

Good luck,

Macca

You're welcome Debbie,

Always great to have positive and inspirational posts that everyone can see to lift them from the gloom of their own experiences!  Light at the end of the tunnel and all that.

You'll probably find a bit of ebb and flow with the headaches but hope fully they'll recede over time.   One day at a time is the right strategy, I'm sure!  Good luck!

Macca

Change is inevitable in all walks of life and at all times of life - it's how one deals with it that counts - especially when it drops unexpectedly at your door!

Good luck everyone!

Macca

Nice one Debbie,

So glad you came through it all successfully and are now in a position to get on with life.  Well done indeed, girl!!

Macca

Well done Mandy,

You've taken another calmer look at things.  It may be that your new treatment may help you to make progress and perhaps increase your hours after all.  perhaps you also may want to discuss the quality of your performance and ask if there is anything at fault with what you are currently doing, to see if there are any changes you can make.

Just a word of caution though.  Be aware of the differences between what is said and what is written and record them at the time whilst your memory is still fresh - hedge your bets, just in case!

But well done.  Enjoy your break, maybe it's not as bad as you first thought - glass rather half full than half empty!

Best wishes,

Macca

Hi Mandy,

Sorry to hear about your work troubles.  Do you have a copy of the report from the OH worker?  If not, I'd press to get one!  What does it say? What does it not say?  What does it say, reading between the lines?

What conversation did HR have with the OH worker? Is there a record? Ask what makes her qualified to comment on SAH matters.  If I were you, I would keep a diary of all these events and I would engage the support of your union rep to ensure you are being treated fairly.

It is natural for you to have health setbacks from time to time and what your people at work, from what you say, are doing demonstrates a lack of understanding of SAH, effects and recovery times, on their part.

Everyone's recovery time is different.  They should be working with you and keeping you informed every step of the way so that you are not left worrying about 'what if.'  They should be talking to you about your performance every week, if necessary, if they have concerns.  They should be offering alternative answers/positions etc if they have concerns.

Try not to worry, but I think it would be wise to take the precautions I mention above, just in case, just to even up the odds.  Let's hope you don't need the ammunition, but be prepared.  Clearly from what you say, you are suspicious of their motives.

Maybe they are genuine and are trying to help you, maybe the reverse is true, but it's no use to sit there wondering, you need to know.

So, when you have your review, take action to ask them what is behind all this to set your mind at rest and to stop it running away with itself.  At least then you can do something about it.

Enjoy your break and then let us know how you get on. As Tina says, big hugs!

Macca

Hi Tony,

Brilliant post!  I think you found out, as many of us have, that you have to find your own ways to change and improve! Sometimes that's a case of trial and error.

It's also sometimes a case of being in denial until you realise that you really do have to start thinking differently, and listening to your own body, to when you were pre-SAH.

I'm retired now, but I often think back to when I was at work.  There was a system in place that many companies now adopt, called continuous improvement, and I think I have to make that apply to my health now.  Find out what you can do, and learn from what you can't, delegate when you can to alleviate pressure and take time out for yourself.

A word of caution though - our system was taken from a motor company's system known as 'LEAN.'  By making 'efficiencies' the motor company ended up recalling millions of cars for faults with braking systems, air-bags and such like.  So make changes to your lifestyle carefully and, where necessary, get medical advice from your doctors before embarking on any physical activites.

I wish you well.

Macca

Good luck Mandy!

Best wishes,

Macca

Hi Mandy,

Pearls of wisdom above.  I'm not going to add to those but I am going to make a bit of a confession.

Although I am a bloke of 5'10" and am now 59 - I have cried like a good 'un.  Do I feel bad about it?  Not a bit because as Daff rightly says, it is a release and I needed to do it.

It also filled me with a resolve to deal with the situation that caused it because I don't like to cry.  Would I do it again?  yes if the situation demanded it.  Would I feel any less of a man for doing so?  Absolutely not.  It is a natural human emotion and to me it is a demonstration of caring and strength, not weakness.

The emotion of crying is a short-lived thing.  It is what you do afterwards that is important.  You should come out of it wiser and stronger and with the experience enriching your capability to deal with future similar incidents.  If you need to cry, do it - in private if you must, but get it out of your system, otherwise it will eat away at you until you clear it.

What matters is how YOU feel, not what others think about you.  Their feelings are their problem, not yours!

I wish you well.

Les

Win,

Have a great day when it happens (it's still only April today?) and as you say , you have come so far.  I agree with you about this site - it's inspirational, non-judgemental and fill a huge NHS gap!

And what a fantastic daughter you must have!  You've made me laugh a lot since I joined and this place wouldn't be the same without you!  Long live Queen Win.  

Blimey, I made Carolyn USA an honorary Brit and now I 've made you the Queen!  It must be the water!!

Macca

Hi Emssy77,

Welcome to BTG.  I suffered headaches for quite a while post SAH. If your scan is clear then that is a positive sign but always check with your doctors for any other underlying causes.

Is this your body telling you that you are overdoing it a bit and it's time to take your foot off the gas?  Often you can feel well and then wretched afterwards as you are lulled into a false sense of security and tend to overdo things.

If you have had these feelings constantly then it would suggest that maybe there is an underlying cause but the only way to check that out is to go back to your doctors and ask them to investigate - and in the meantime take it easy!

Good luck and let us know how you get on!

Best wishes 

Macca

Welcome home Carolyn - yes I made you an honorary Brit - I saw your note in your other post - and we're glad to have you.  Well done brave lady - chin up, rest up and get better!  Fabulous news that you are ok!

Macca

Hi Carly,

Welcome to BTG!  The truth behind these things is that everyone's experience is at least slightly different.  There is every reason for optimism though and there will undoubtedly be someone who is similar to you in what they've been through.

Fortunately for me I don't have to go through a second operation - one was quite enough for me and wasn't an experience I wish to repeat!

Nevertheless, if I had to I would, my doctors and nurses were superb and I would have every confidence in them.  Take your time in recovery, the world will still be here on the next day and the one after that.  Nothing is as important as your health.

Stay hydrated and take one step at a time.  Patience and stealth are the way forwards to good health, with the support of those around you - and us!

From what you say, it sounds as though you are fairly fit which should be a big help at operation time!  Good luck and please let us know how it goes.  I'm sure others will add to this!

Best wishes,

Macca

Treeeeeemendous news Win,

Please pass on my love and best wishes - what a brave lady!  Honorary Brit!

Macca

Hi Debbie,

Absolutely delighted for both of you, well done girl, I hope your progress is swift and your husband is swimming in glee at having you back!

Best wishes,

Macca

Great news Greg, you're doing better than me.  Over exertion floors me, and, like you, I was very active pre-SAH.  One step at a time though eh?  Well done mate, but don't over do it and don't put too much pressure on too soon.  Patience is a virtue, but well done mate!!

Macca

Great news Mr and Mrs Sub - apart from the cake bit!  Not much left?   Better get baking!!  Lovely news though!!  Onwards and upwards!

Macca

Teechur,

Great analogy and succinctly put!  Especially about the doctors!

Macca