Macca

Hi Bill,

A very warm welcome to BTG. Behind every good man there's a good woman. What a great relationship you two have.  Yes your story is a familiar one, but you are a partnership -alone you may struggle - together you will thrive!

An event like this in your life puts things in perspective and makes you truly value the importance of family life - much more valuable than material things!

Good luck to you, sir, and keep posting!

Macca

Thank you SarahLou,

I am truly humbled by those kind thoughts!

Macca

Hi Sammy,

I don't have a shunt but I was coiled five years ago.  I have flown about 20 times since then, both short haul and long haul without any problems.  Pressurised cabins have not caused any problems for me.  I actually have more problems on the ground with ordinary barometric pressure changes, in particular with drops in air pressure which produces 'muggy' feelings and sometimes a low thumping type of headache but nothing serious. 

Perhaps others who do have shunts will re-count their experiences for you. If you have any doubts speak to your doctor before you plan your trip.

Best wishes

Macca

Wow Carolyn! Thank you so much.  I have tears in my eyes writing this, my own ordeal seems almost insignificant compared to yours.

We all look for, and need, support and our respective health systems don't seem to provide very much of it so we have to do it for ourselves.  Do you know, though, it seems that we're probably the best people to provide that support because we understand - really understand, what people are going through?

You also provide a lot of support and throw in a few laughs along the way, and remember, I saw the Brit in you!

You have the courage, the guts and the understated, but steely determination to succeed in whatever you do.  It's a pleasure to know you and to continue to support you in your continuing quest for well-being. You have your feet on the ground and a pragmatic approach to life that stands you in good stead.

Keep going Carolyn - and I promise I will even listen to you sing with Win (Lol Win - only joking),  if I have to, if it means the sun continues to radiate from your core, so it brings sunshine to all of those you touch (metaphorically speaking of course!) for many, many years to come!

Thanks again Carolyn, I am really touched by your kind words,

Macca

Five years ago today marked the start of a new era in my life.  I survived the truly awful ordeal that we've all been through in one way or another on this site, me a a sufferer, others as a carer or relative.

Thanks to advances in technology and medicine, I survived and I now look on life as every day being a bonus gift - time to make the most of.  That is my way of giving thanks to those that saved me and who cared for me in the darkest hours.

Five years on, I am still here and give thanks to this support site, who have been there for me when I needed help and advice.  I doff my cap to Karen, the founder of this site - what a marvellous innovation it was and what a hole in after care it filled and continues to fill for so many!

I look forward to the next five years - at least!

Best wishes everyone!

Macca

Paul,

Print these posts off and show them to your doctors.  They will explain better than you will on the day what your fears really are and they will be better able to help you.

You said above "That's maybe a weakness, but then maybe also a strength."  That's your first positive - maybe you are turning the corner now after all!

Five years ago today I had a SAH.  I survived - so will you!

I'll give you another Winston Churchill quote, and one which should resonate with you.  He said "It is not the beginning of the end, but it is, perhaps, the end of the beginning."

Your new phase of life is to accept the shunt , let it do its job whilst you get on with yours - enjoying and making the most of your life. 

Best wishes

Macca

Hi Paul,

You mentioned earlier that you thought the shunt was like a replacement part in a car.  So think logically.  If you expand that and think of your body as a car - it came with a lot of parts, heart, lungs, liver, kidneys, eyes, ears and so on.

Over time some of those things fail - ie your eyes get worse with age - so you get glasses, your hearing gets worse so you get a hearing aid,  even heart, lungs, liver they can replace these days, you have a SAH, you get a shunt! It's more likely that another part will go wrong before the shunt does, so it doesn't really make sense to just focus on that.

In all these cases, the car is repairable and is not a write off. Neither are you!

Now with your shunt you will be able to do pretty much what you did before, in some cases better or differently.  You are a young man - yes you've had a jolt, life has made you think about things differently than you did before and probably before you wanted to - but you know what - you've now got something many others don't have and that's experience and knowledge that you can use to help better your own life and those of others who don't have your experience. Some people go a lifetime and never get that!

So turn what you see as a negative into a positive - lots of people on this site have shunts and they're still going strong - so will you. Life is full of opportunities - if only you look for them.

You are an intelligent guy and sometimes that makes you think too deeply and that can make you dwell on things.  If you start to get out there and make yourself active, that will distract you from thinking about shunts, improve your confidence and over time your belief in yourself will come back.  Your brain is working Paul, just look back at your posts - they are thoughtful and rational and detailed.

All they lack is a little positivity and that's natural after a SAH.  It takes some time, though, as all recoveries do and if you read some of the threads in this forum you will realise that.  You're just on a 'time-out' right now.  So don't be hard on yourself, don't beat yourself up, if you fall off your horse you get up again and get right back on it, don't you?

You are a survivor Paul, you have youth and strength on your side - that's something some of us don't have.  So use it wisely and embellish your life with the love and support of those around you to a level where you reward them for their unconditional support for you by becoming well again. Remember that saying - it's not what my country can do for me - but what I can do for my country!  if you substitute the word family for country, you'll get where I'm coming from!

You're doing wonderfully well Paul.  I mentioned a quote by Winston Churchill (Our World War Two Prime Minister)  on another thread the other day.

He said "When you're going through Hell, keep going!"

In other words, when times are tough, if you keep going, better times will return - that's you Paul - you'll be just fine!

Good luck Paul - stay in touch! I wish you well!

Macca

Paul,

Don't worry, my daughter in law has a shunt and has had it since she was little.  She's 32 now and hasn't had a problem.  The only thing she had to undergo was a replacement procedure because she had out grown the small one they fitted as a child, as she turned into an adult and she needed a larger one.

Yes ask your doctor questions, but don't let it rule your life.  It is in place to help you get on with life not to hinder it.  Get out there and enjoy things.

Good luck,

Macca

Skippy,

I wish it was under different circumstances too, but given that I had to go through the experience of a SAH, the golden thread that went through the silver lined cloud, was meeting all of you on BTG!!

Many congratulations on reaching this fabulous milestone!

Macca

Elizabeth,

I suffer fatigue most of the time and headaches sometimes.

I find the best way of coping is to do things in short bursts and then rest in between.  Resting is as important as working.

This way you still get things done, you are less tired and your body gets the respite it needs to carry on.  It's only a  small adjustment but one which pays dividends for me.

It also means he will feel of value and it will break up his day if he can do things over a longer period.  It may mean he even does them better as doing things more slowly usually means better quality.

It's just a different way of looking at it.

Good luck, 

Macca

Hi Andrea,

You were lucky to be conscious when you went in the air ambulance - I was unconscious when I went and it could have been a canal barge for all I knew!

Anyway, welcome to BTG.  The best part for you is that they have identified the problem and are able to keep an eye on it.

Take care in your recovery and don't try to do too much, sometimes your body can lull you into a false sense of security and then let you know in no uncertain terms that you are going too fast for it!

Good luck, keep us posted and be gentle with yourself in the meantime!

Macca

Hi Kris,

Congratulations on getting this far and on still improving!

I'm not at all sure about wanting to re-live the experience of a SAH but I understand where you are coming from in terms of the insight it has given you.

Given your previous occupation I can see how that would fascinate you.  Nevertheless, it still leaves you with decisions to make about how you spend the rest of your life.  Maybe you could think about how to turn one of your new interests into something you could make cash from.  

Could you become a lecturer in neurophysiology and relate it to the SAH experience?  Only thinking out loud!

Can you draw/paint?  Could you frame some of your own art and sell it?  Could you run yoga classes and charge your customers?

You would only have to do them when you felt like it, not necessarily as a full time job.

Whatever you decide, good luck and once again, congratulations!

Macca

You're welcome Paul!

Our World War II prime minister Winston Churchill (remember him?) once said "When you're going through hell - keep going." 

In other words It might be bad at the moment but if you keep going, it'll get better!

Great man our Winston - Keep going Paul! Patience is a virtue!

Macca

Hi Paul,

Welcome to BTG.  A lot of us seem to be able to remember the events leading up to the SAH, but not immediately after and we all seem to rely on what others tell us we did.

In my own case, I said some really stupid things.   In hospital, they asked me if I knew where I was and I said "Matalan" (That's a clothing store), they also asked me if I knew who was our Prime Minister and I said "Diane", I don't even know anyone by that name.  Really, that's not important, unless it persists, but thankfully it didn't and I made a good recovery.  I suppose it's only natural that when your brain goes through such a trauma, that it will take time to recover.  The big question is 'to what extent will it recover?

All of us it seems will have a different answer to that question but we owe it to ourselves, those that care for us and those that saved us to make the best of what we've got.

So try to draw a line under the event and move forwards from it as best you can and enjoy your 'second chance' at life.

It's not always easy, but over time I'm sure you'll get better to one degree or another and bad memories won't be erased but they'll fade over time.

Good luck, and let us know how you get on!

Macca

Hi,

I always found that mental activity was the key to getting over this.  In particular being around and engaging with other people.  When I was on my own, reading and looking at art, photographs, wildlife in the back garden (birds, hedgehogs, squirrels, fox) would occupy me for hours, researching my family history and so on.  It doesn't have to be a physical activity, just something that stimulates thought and discussion.

Being on one's own dwelling on what has happened is not good for one's soul I feel and these periods should be kept to a minimum. Try to find an interest in which your Dad can engage and talk about!

Hope this helps,

Macca

Karen,

Congratulations on reaching this mile post.  I'm only half way there (nearly 5 years)!  I don't know about us supporting you, more the other way round - you supporting us.

When you asked me to be a mod, I felt incredibly privileged.  Now, having worked with you and the others I feel even more so.  Knowing I am in a position where I can help others is immensely gratifying - and it's all because of you!

So thank you and long may it continue!!  Hip hip hooray!!

Macca

Hi Annie,

Not unusual this one.  Everyone's rate of recovery is different but your body lets you know when you have done too much too soon and it sounds like yours is telling you now!

Ease up on the pace a bit and as Tina says - talk to your doctor - you are already doing so well to be back at work so soon.  You don't want to set yourself back.  Perhaps take some of your annual leave allowance to give yourself a break.  Look after your body and it will look after you - abuse it and it will make you pay!

Good luck,

Macca

Congratulations - a weight off your mind!

Macca

Hi Sarah,

Firstly -welcome to BTG.  I am so sorry for your loss and  wish you the very best as you try to come to terms with it.

I was married to the mother of my two sons for sixteen years - she then had a SAH around 1987. My boys were 10 and three at the time. I had my SAH almost five years ago.  That means my boys have two parents who have suffered this.  It is rare for it to happen in the same family.  Naturally I was worried about my two boys. They are 38 and 32 respectively now.  My former wife recovered well, but her personality changed and, well, we're not married anymore.

I asked my doctors about it.  His response was that we had just been unlucky and that there was no proof that this is hereditary, but he did admit there was very little by way of research.

He likened what had happened to us to that of riding a push-bike and getting a puncture.  Some will go forever without getting one and others will get one and the cause will not always be apparent.  Results of the puncture would also vary from being easily repairable to not being repairable at all.

I also have a friend who has suffered four SAH's and survived them all.  He is such a rarity that the hospital ask him to address patients groups and doctors and nurses groups.

I also know of two people locally who survived SAH but one has severe mental problems as a result and another who's having currently to be taught to walk and talk again and is a shadow of his former self.  However, they are still with us and we are grateful for that and progress is being made with both of them.

I am lucky.  I have recovered very well apart from my pituitary gland having been damaged and as a result I have to have some hormone injections daily to combat chronic fatigue.

I cannot imagine what it is like for you having lost someone, but I can tell you that people on here understand what it is like to suffer with SAH and what it is like to watch our families suffer at the same time watching us go through it.

What I can tell you is that my sons are going from strength to strength and they show no signs of any problems.  Please try not to worry.  SAH is rare, and occurring more than once in the same family is rarer still.  Obviously my wife and I were married and not blood related.  But my sons are blood related to both of us and are healthy and well.

I hope this helps you.  Please talk things over with your doctors.

I wish you and your family well.

Macca

Hi James,

Patience is a virtue!  I too am a northern man (between Manchester and Bolton) and was physically fit before my SAH nearly five years ago.  I was playing 5-a side football the night before mine - I was 54 at the time!

Recovery is very slow - your body simply does not allow a quick recovery from SAH.  If you go too quickly. your body lets you know you have done too much.  It took me the best part of a year before I would walk unaided again!  I still have the odd balance problem, especially if I am tired.

That wait for relative normality is frustrating and it does make you agitated at times until you adjust and get used to the new pace of things.  During that time, your continued support for him will be vital.

Just take your time and when there are things he can't do encourage him to think and work out a different way.  In some ways that can be just as satisfying and it makes you more creative.  A bit like a cranial version of the Great Escape, if you like!  Learn to strike a balance of being there when he needs you and standing back to let him do some things for himself.

Keep a diary of what he can and can't do now and maintain it over time.  You will be amazed at the difference in six months time and beyond.

Good luck!

Macca

Laura,

Yes it's frustrating to fight for all those things, but you know what?- Life, and quality life, is well worth fighting for.  Just that one look on your face was worth the wait and the fight because it gave you a memory that you will always hold dear to your heart.

Don't ever doubt that - Dad is worth the fight!  The reward was so much more than just that look, for both you and Dad.  Keep on fighting, keep on loving, keep on laughing, keep on doing things together and the effort is more than justified by the quality you achieve, whatever that level is!

Macca

Hi Sammy,

I had a lot of those "Why me?" thoughts at the beginning.  I was angry, confused, frustrated and any other words you can think of to describe what I at first thought was indiscriminate injustice.

Then I thought, I'm not going to let this beat me and looked at it from a different perspective and here's some of what I came up with:

These people worked hard to save me, I'm not going to waste their efforts.

1) What opportunities does this condition now afford me?(appreciate my family more, re-appraise my lifestyle and commitments)

2) How can I change what I was doing before to make my life more bearable for me and those around me? (travel less, stress less by analysing what's important in life etc)

3) What can I do to help me get back to work? (go for a walk, do the crossword to keep my brain working, keep in touch with colleagues etc)

4) How can I change my lifestyle? (Slow down, less hours, retire, walk more, eat less and better, re-schedule things, delegate more)

5) Not what can I do for myself, but what can I do for those who supported and looked after me? (smile more, make more time for them rather than for me, do things for them while they are at work and I'm at home, simple things like wait for parcels, look after kids till grandma gets there, wash up etc),

6) What other abilities have I got or can explore to replace any I may have lost. (lost playing football, gained painting, model making, gardening, DIY, reading more and so on)

That's the way I tackled it and it has worked pretty well for me.  All the above were things I could control.  The SAH happened but I couldn't change that, so I asked myself how I could move forward from it.

Don't get me wrong, I still have my moments, but overall the picture is positive and good.  Everyone's experiences will be different but there are things that most people can do to a greater or lesser degree.  and you have to find your own level. As we age we get used to things slowing down and we adjust almost without noticing.  With a SAH the change happens overnight and it panics us a little bit until we get used to it. You will adjust in time - you're just doing it back to front because of what happened to you.

Give your little girl lots of hugs and re-assurance and lots of quality time.  You may even think your life has gained quality rather than lost it as a result.  Let her know how special she is.  Doing lots of things together will be of great value to all of you!

Best wishes,

Macca

Hi Sammy,

Talk to your doctor. If you are experiencing these pains  your doctor needs to know because he's the one that can do something about it if possible.

I had three lumbar punctures and I had leg and back pain.  I have aches now rather than pain but in the early stages, like you are in now, it was very uncomfortable - they just told me it would settle down over time and it has, but it took a long time.

Patience is a virtue and don't try to do too much too soon - your body has a way of telling you in no uncertain terms that you have, so please take it easy!

Good luck and enjoy your trip!

Macca

I actually lost my fear of dying after being unconscious for a week in a coma.  I think the realisation that our time will come one day is something we don't like to think about that often, but a life-changing event like a SAH makes us realise that we are mortal and should put our affairs in order. There is a satisfaction from doing that.

After all, you could be perfectly healthy and become ill, or be involved in an accident, or one of the terrible incidents we see in the news almost on a weekly basis now.  You can't let your life be ruled by fear of what might be - go out and make your own luck, make things happen as best you can, whatever your capabilities.

We are all mortal, live life for the gift that it is, make provision for those we love and enjoy what the world has to give us whilst we are here.  Que sera sera!

Go to the beach with your kids, play football, have an ice-cream - enjoy the time and create good memories for them, make the most of this quality time, then watch them go and make lives for themselves and then enjoy their kids, your grandchildren.  I'm no professional but being inactive is, in my opinion, what lets your mind runaway with itself.  Doing things lets you see that it is quality of time and activity that is the key to a great life and is the eventual legacy you will pass to your offspring, enabling them to do the same in their turn in life.

Give them positive, not negative signs.

Some level of depression is natural in the early stages of recovery after SAH but its degree varies from person to person and lasts as long as it lasts.  Every individual is different.  I know I suffered from it, but I recognised it in myself and talked to somebody [my doctor] about it, got it into the open, got it into balance and into perspective.

Like any other condition, where appropriate, seek medical advice from professionals and get it treated.  Mental health is every bit as important as physical health.  We should tackle it, not be afraid of it, we should more readily recognise it even though others can't see it.

Yes, it happened to me, but it is yesterday's fish and chip paper for me.  Someday soon, I hope, it will be for you too!

Best wishes,

Macca

Hi,

All one can say is doctors will act as they see appropriate in the best interests of their patient.  We can't give medical advice but one would expect that you would be directed to the nearest place with suitable facilities.

Transfer times will be dependent on where you live in relation to the hospital and how seriously ill you are, whether it is safe to move you etc.

How long is a piece of string?  There is no definitive answer to this one I think.  You should speak to your own doctors about this.

Best wishes 

Macca