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New Member Greg, Recovery.......


Greg 21.01.15
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Hi All

 

Where to start.......

 

I had a non-aneurysm SAH on the 21st of January, 2015 while I was training in the gym. All the standard symptoms that folks have described here. Luckily after being brought home my wife managed to get the NHS direct to understand there was a real problem that probably shouldn't wait till the next morning and an ambulance arrived.

After a miss-diagnosis of heart issues I got transferred to a neuro specialist unit and when I came round 36 hours later I had an EVD inserted and a thumping headache! Unfortunately the EVD introduced an infection into my brain and a rough few days followed while the antibiotics did their stuff. The drain was removed after two weeks and the antibiotics stopped a week later at which point I came home.

 

I've been home about two and half months now, and I know I am probably just being incredibly impatient but recovery seems to be taking for ever. Just when I think I am turning a corner, gaining a bit more strength or not needing so many painkillers and then "bam" back come the strong headaches and all the other associated issues of tiredness, nausea etc. 

 

My acute care in hospital was second to none, and I am eternally grateful to everyone that looked after me, there are some real saints in that hospital, some amazing people who fixed me up and got me on the road to recovery. Where I am really struggling is with recovery, I know from everything I read on these forums it is such an individual thing. I have (luckily) never experienced anything like this before.

With a cold, flu, a broken bone, every day it gets a little better, it's a linear thing, but with SAH some days I can feel absolutely fine and then the next headaches, head spinning and it feels like I am back to square one. I want to get back to work, but I can't even manage to see my colleagues for lunch (in the pub) without my head doing loop the loop and headaches for the next couple of days.

 

I was discharged with only a three month follow up and told take it as life as usual just in moderation (which I have). I have very gradually tried to get on top of the physical lack of stamina and I know how to get fit again but my mental stamina isn't improving and I don't know how to help myself build my strength up in this respect. Have other people had similar experiences? How have any of you dealt with this?

 

As always I have waffled on, apologies, a bad headache day compounded with a fair amount of cabin fever, it helps to get it out there, so thanks for reading this far!

 

Any thoughts, advice or just pull yourself together man will be much appreciated!

 

Cheers

 

greg.

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Hi Greg, and welcome to BTG. Sorry you had to find the forum in this way though.

As for building stamina, I'm not sure I've worked that out yet myself as I'm only a little over a month ahead of you following a SAH. I've just started a very slow phased return to work as I'm on my third week doing four hour days twice a week. Eight hours work a week and it still wipes me out, although I think it's getting better.

All I can suggest is as others will, that you take as much time as possible and be kind to yourself. Your brain has suffered an "insult" and it's not very forgiving. You'll get there in the end, wherever there is, but one things is for sure, it can't be rushed.

Check out the Green Room for some light relief, and post on your thread regularly - you'll be surprised how much progress you have made when you look back at your diary. Oh, and check out the singing around here, too! :)

Best wishes,

Mandy

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Hello Greg,

A warm welcome to BTG.

It's such early days in your recovery but we do all understand the frustrations.

Fixed and sent home to get on with it.

Recovery will be a long journey, with few steps forward and a few back. I can remember the simplest of thing totally shattering me.

It took a long time to adjust, accept and learn to pace, hey I'm still learning now over 4 and a half years on!

My lack of short term memory and fatigue have stayed with me, but improved. In the early days I did puzzles and brain train games. Then built up walking exercise daily very showly.

My mental strength has started improving in the last year after I took a leap of faith and went for a complete career change.

You will get there Greg, I promise, but for now you need to have a bit of patience and understanding, remember all that you've been through and how far you've come already. Write a diary, keep track of all the little things you notice that change, they may be small but they will feel like milestones. Perhaps read 'A letter from your brain', it's on the home page under inspiration.

I still read it often as it grounds me when I need to be grounded.

Listen to your body, rest when you need to, drink plenty of water, then drink more water!

You will find lots of strength and understanding on this site, we're a lovely bunch!

Take care and keep smiling,

SarahLou Xx

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Hi Greg,

 

Do not look back in days look at how you are, more like every 3/4 weeks see if you have improved and I bet the answers Yes !!

 

You will  get up and down days and you must not stress as my Surgeon told me.  Stress doesn't help you so keep light hearted  and when down sing, that's what I do (Not sad songs).  Driving my hubby up the wall.

 

It can be a long haul but you will make it,  now cheer up and never give up.

 

No exercise for a while, I was told not to lift over 10lb so that's my weeks chocolate ha ha.

 

Good luck on recovery

 

Regards

WinB143 (Note: Pull yourself together man,  joking !! x)

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Hi Greg :) a very warm welcome to BTG.

It is still very early days for you in your recovery, I know how frustrating it is when you go one step forward and two steps back. It's your body telling you to slow down. Rest, rest and more rest and drink plenty. Things will get better :)

Some really good advice from Mandy, SarahLou and Win :)

Glad you found us and look forward to hearing more from you.

Take care

Tina.

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Hi Greg its good you have posted here sometimes it's good just to write it all down.

 

I was extremely impatient in my first year of recovery to be expected I suppose was never ill not super fit but fit for my age and this thing hit me like a ton of bricks.  The mental recovery was by far the longest for me something we have no control over really the, brain decides.

 

Just try to relax give this the time it needs, I had an extensive bleed so my recovery was a long one, still got a bit to go.

 

Try to find out as much as you can ask lots of questions most of all stay calm You're one of the lucky ones and you'll get better from this.

 

I also had my SAH in the gym, I collapsed within 2 minutes of onset of the terrible headache. 

 

Take care any more questions just ask.

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Hey Greg, warm welcome, glad you found us.

 

It isn't like flue, or anything that's big, its bigger it takes time, for every 2 steps forward there as many back but honestly it does get better it is early days for you...

 

I think we've all been impatient have to say I'm a lot more impatient than I ever used to be but I know that things do right themselves all be it eventually....

 

Take things easy, don't push too hard be kind to yourself, keep hydrated, and listen to your body when it says rest then do just that...

 

Hope you find the site useful.

 

take care

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Hi Greg. I'm not going to tell you to pull yourself together I am going to congratulate you on how well you are doing and that's my best advice to you, start being kind to yourself. You had a bleed in the control centre of your being and that kind of assault sends normal out of the window so expect less for now as your brain is doing remarkably all things considered with its bleed and surgery.

I think everyone who has an SAH should be sent away with a planned follow up to have counselling and see a neuropsychologist because without fail they can treat us with amazing critical care but they can' t help us accept and adjust to the changed state of our damaged brains and sadly that is what we now live with.

So three practical suggestions for you.

1. Contact headway and ask them can they offer you some local support, maybe can they help you develop a plan to build that stamina, they did for me which included having someone accompany me the first time I went swimming nearly a year after so I didn't burden my family with that fear and worry that I might sink in the pool first time I tried, I didn't!

2. Don't meet colleagues in the pub. Arrange to meet somewhere Much quieter where your brain doesn't have to process ambient noise and only for a short period initially, then build it up with number of people and level of noise. Pub is up there on noise scale, dial it down. Invest in some good ear plugs.

3. Write a list of what you are aiming for and goals and then think about what is practical in reality and how you might build to that. Be honest with people how you are feeling and if you do anything then rest afterwards, even if you don't want to, rest in quiet and drink water, by pacing yourself now it will help with stamina. It's frustrating and difficult to adjust to but if you can do it early then it does help.

Best of luck and I hope your hair isn't too 'new romantic' after the EVD placement, how I hated that partial shaved head look!

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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

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greg,know what your going through.had mine last year.felt exactly same as you.

use to drive my wife mad,find fatigue the worst.it does get better,just be patient,

found this site a great help.lots of support and people who have been through same thing.

take care rob.

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First of all thank you to everyone that replied with words of support and good advice. It is much appreciated and I will do my best to heed as much of it as I can. To state the obvious but it is really helpful to know that other folks have been through / are going through the same and you are just part of the norm. 

 

I have since writing made a positive decision to ask the doctor for another month signed off (I see him tomorrow morning). I was really stressing myself about wanting to get back to work (I'm lucky I enjoy what I do (most of the time)) but just after writing this first post last week my head was spinning, it brought it home I'd be nuts to try to go back yet. I will be on a phased return but with the best will in the world people find it hard to appreciate the limitations.  I have heard so many times how well I look and I know its meant kindly, but..... 

 

This coming week, I am going to speak with Headway, spend more time recovering after doing whatever, and take up the chocolate weight lifting regime suggested above!

 

Thanks all, speak soon!

 

greg.

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Don't forget to share them Greg !!

 

Look All Greg has handed me a huge box of chocolates, welcome to BTG Greg it is a good place to come when anxious about any little worries you may have.

 

And if you want to rant also, oh sorry I've eaten the top layer...Serious though  well as serious as I can be !!

Knowing you are not alone in this makes you feel better.

 

When down sing, ( oh already told you ) it helps, good luck on recovery Greg .and do not listen to people with lots of problems as that gives you headache also.

Just until you are a bit better.  Surround yourself with Happiness.

 

Regards

 

Winb143  Thanks for Chocs.

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Greg, I would always advise to go with your gut feeling ... only you know what you're feeling and if you're ready to go back to work, even on a phased return. The Doc is probably waiting for you to say, what "you" can do and if you're ready (most GP's don't know a huge amount about SAH or it's fallout)....so always be honest and always seek additional help with your GP if you need it and many of us do post SAH. I know that it's hard to ask for help, but it may help to get you back on track faster than struggling.

 

If you're stressing about returning to work and know that it's not the right thing to do, then you need to say so and I'm glad to see that this is what you're doing, so, well done!

 

Also glad to hear that you're contacting Headway ... they're a very good organisation.

 

Wishing you all good things. xx

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  • 2 weeks later...

Today's a good day: A 3 month update:

 

Today is to the day three months since my SAH, and it's been a good day. Prior to my SAH I used to exercise almost every day, it was a really big part of my life and since then I haven't been able to do anything. However today I got out on my bike (push bike) for the first time. Admittedly an asthmatic octogenarian would have overtaken me but it felt great to be out in the fresh air on such a beautiful day. Needless to say I will sleep like a baby tonight as I'm rather tired, but was great to be out and get the heart rate up just a bit.

 

A great milestone for me on my three month anniversary, just wanted to share it with folks.

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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

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Well done Greg, glad to hear you managed to get out on your bike. I am at my 10 week anniversary today, managed a ride to the GP to extend my sick certificate. Lovely day for a cycle. Keep up with the physical exercise, I am trying to get out every day and even managed a mile and a half 'octogenarian' run. The more you do the easier it gets and subsequently the more you WANT to do.

 

Sleep well tonight and dream of your next cycle ride!

 

Clare

x

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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

 

Thanks Macca, I know I need to be patient and not do to much but today was too tempting and I did take it easy honest! An easy day tomorrow. Cheers.

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Just to add Greg that I have a acquaintance who following their SAH took on a gruelling cycle challenge three years later and very successfully. Not saying it's for everyone but she swears that for her the exercise really helped, I'm like Macca in that it floors me but each bleed is differrent so you will find your rhythm in time

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You wasn't that cyclist who rammed a bus was you Greg ?
 
Was you tired or did you feel okay today?

 

I threw caution to the wind also, I helped my daughter change my bed ha ha xx

 

She is so good to me, anyway hope you don't do too much but feel well afterwards.

 

See a step in the right direction Greg, here have a choc, ha x 

 

WinB143

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You wasn't that cyclist who rammed a bus was you Greg ?

 

Was you tired or did you feel okay today?

 

I threw caution to the wind also, I helped my daughter change my bed ha ha xx

 

She is so good to me, anyway hope you don't do too much but feel well afterwards.

 

See a step in the right direction Greg, here have a choc, ha x 

 

WinB143

 

 

 

No run in's with any busses thank god, we have some very quiet lanes around here. A choc thank you very much thanks Win!

 

Did feel tired today but not ridiculous, have taken it easy and have managed to avoid the worse excesses of extra headaches. I won't go out again for a bit, but glad I went yesterday. 

 

Might be a while before I go for anything to gruelling, exercise will hopefully play a part in my recovery, but Macca is wise to advise me to take it a step at a time.

 

But it was a beautiful day yesterday:

 

First cycle in three month, and on such a beautiful day

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Glad you feel okay Greg and good luck on your recovery, if you ever feel down try thinking about good times when you have laughed

so much, or go for a little bike ride. (Yes Little) !!

 

My hubby has got me a bike and he has put it in garage, I cant go anywhere it's just for making my legs stronger.

 

Well must dash got to sit in the garage for 15/20 minutes !!!   must Laura Trott off ha

 

Keep Well

 

Win the cyclist (Not)

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