Macca

Get on to Directgov.co.uk. there should be good info on there. I believe you can access it through your TV set as well if you have no access to internet.

Macca

Thanks Cath. Don't beat yourself up - the rugby team's already done that ha ha!. I suffer short term memory loss too! Motivation can be a problem. I deal with it by listening to something that makes me laugh to put me in a good mood. Also doing things with other people to get you started because that is the hardest bit, then you keep going because you then don't want to let them down - that's the guilt complex kicking in. Don't overdo it though because you will suffer next day if you do. As long as they can see you've tried your best they won't expect any more!

Do things in what I call 'manageable chunks' Remember not to make a race out of anything or become too competitive - remember the Tortoise beat the Hare - you'll get there in the end.

Welcome to BTG!!!

Macca

Sorry to hear about your problems, try to stay positive. I suffer with fatigue and those that know me on here will know that I keep going on about the pituitary gland. They're probably fed up of me by now! look up 'Pituitary Gland Foundation' on the internet. There's some great information in there. I know its a long time since your treatment but it's a possibility. Gosh, the body is a complicated thing isn't it? Your condition sounds a lot more complicated than mine but constant fatigue is a nightmare! I know you don't like doctors, but your experience can be coloured by what you have encountered. Mine have been absolutely superb. Any chance of speaking to another? It really will be worth it and not as bad as you think. Before you go, write all your symptoms and effects down so you are not tongue ties or say the wrong thing - take it with you and show the doctor - keep a diary of how you are feeling. You're not alone Lynsey - have a rant on her any time you like.

Good luck and let us know how you get on

Best wishes

Macca

Join the club. My SAH was on 1/9/10. Unconscious for 6 days. Platinum coils, three goes at a llumbar puncture. Felt like I'd met the same rugby team you did, DVLA took my licence for six months but I have it back now. When you get it back you'll find yourself taking a lot more care. You'll probably be a better driver as a result. It is a slow process getting better. I still suffer with fatigue. My pituitary gland is damaged apparently, it distributes growth hormone around your body which affects your general stamina and muscle strength. Doesn't affect everyone. I went back to work after 6 months and have been back over a year but I was getting home and going straight to bed. I am now off work and going back to hospital next Thursday, when hopefully, I can start HRT - yes I'm a bloke going on HRT, I think. I didn't even know men suffered with this - but ladies you have my undying sympathy and admiration if this is what you suffer with. It is incredibly exhausting, mentally and physically because there's no escape from it. But, hey, I'm alive and getting on with it, and the support you get on this site is superb. Paul and Cath it is a long road back and it can be bumpy but as one or two will say on this site, even the longest journey starts with a single step.

hats off to the paralysed lady who just completed the london marathon after 16 days with robotic legs to assist her.

I feel lucky by comparison.

Rant over - welcome!!

Macca

Welcome Eddie,

Great to have you along for a ride - ok so it's a rubbish gag - ask as many questions as you like. Don't hold back, the only daft question is the one you don't ask!?*. If we don't know an answer, one of us generally knows 'a man who can'

If you don't want to ask questions then just have a rant, let your feelings go, this is the place to do it - just doing that will make you feel better and you'll get some fabulous responses too

best wishes

Macca

Hi Claire,

Just be honest when you go. Tell it like it is, how you feel, what your worries are. Don't dress it up just because he's a consultant or because you feel daft or guilty. You have to be honest to get an honest answer. Take your letter and what you have been writing down - print some of these pages off if you have to - just make sure you get your message across. In order for him to be able to properly diagnose you, your part of the bargain is to give him a fair chance by giving it to him straight and in full. If you can't remember everything or trust yourself to say everything you want to because you are nervous or don't feel you can articulate it properly- write it all down, including any questions you wwant answering, before you go and give it to him when you get there.

He's the one that gave you the paper bag - is it him that's nuts?

Let us know how you get on

Good luck

Macca

Hello all,

sadly this is all too common - amongst the disabled, stroke sufferers, forces coming back from wars, the elderly etc. Everything seems to be about cash andd there's never enough to go round. That's why this group is so good - it costs little and yet adds so much to our lives, making it richer and a more cohesive place to live. However the lack of professional help when you need it can be alarming and when it is available it can be difficult to get hold of, depending on where you llive. I know I am lucky, but the treatment I have had so far has been nothing short of superb, but as time goes on the help gets less. I suppose everyone has to be specific about what their needs are and everyone's are different. I suppose there lies the problem to produce a one size fits all after care system. I hope something can be done.

Best wishes

Macca

Hi Kris,

Believe you me it was not brave of me to go back to work. I have a mortgage to pay and that was my principle driver. I went back too early and I am paying the price somewhat now. I am feeling some of the things you are, but I bitterly regret going back to work after six months - it was too early. I must have been stupid - be stupid. However I got my hospital letter this morning - I'm going back on the 17th of May so hopefully my HRT will start shortly after and fatigue will be a thing of the past but something I will never forget. Fingers crossed that their diagnosis is correct - not that I doubt them off course - they have been brilliant so far. I will let you know how I get on. I am currently enquiring as to the possibility of me taking either partial or full retirement but HR don't rush these things do they?

Kris, I hope you are well and I will watch this space. I hope you can get the support you need and I will comment when appropriate. Sandi K has made some excelllent posts on this thread hasn't she? Great support from everyone and I thank all of you sincerely for what you say

Macca

I mentioned earlier that I thought the King of Wishful Thinking was by Huey Lewis - It wasn't - it was 'Go West' of course. Just another example of my poor memory. Apologies for the mistake. Sun is shining today, hope everyone is ok. have a good day!!

Macca

Hi Tom,

I can't begin to tell you how happy I was to see this news - it's fantastic and I am so pleased for you and for your family and friends - especially for your partner who, it appears to me, has been and continues to be, your rock. I am delighted to offer you my heartiest congratulations - it really has made my day!!

best wishes

Macca

Thanks Sandi,

You are right, of course, but when you have been instilled with a work ethic and you can't practice it as you once did, it hits hard. This site is brilliant, though, for a level of understanding you can't get anywhere else. Thanks for your concern and empathy. My disquiet is greatly lessened by what you say and hopefully this break will see me have a fresh impetus after it is complete - thank you so very much! I hope you too continue to improve and I will watch this discussion for news of your rise.

Best wishes

Macca

Well, I went to the doctors again this week as I am mentally and physically wiiped out. She took one look at me and signed me unfit to work for at least two weeks saying I needed a complete break. Sometimes it's hard to be told what you already know but don't want to accept. Nevertheless, I am at home and I needed someone else to tell me to slow down, but also to tell others ie my colleagues that I needed to slow down. Still, my conscience still makes me squirm and feel like a bit of a fraud, sometimes I wish I didn't have one - guilt is such a wicked carrier of self condemnation.

Still, I am relatively ok but it's eighteen months now since my SAH. I iwsh I was completely fit again, but for now I just have to be 'The King of Wishful Thinking' - another song title for you there Michelle!! I think it was Huey Lewis, that one!! Still waiting for my HRT!!

Hope you are all well

Macca

Hi Claire,

'Shout, Shout, let it all out' (Tears for Fears song). Preferably at that wretched haridan of a Doctors secretary! It's not enough for them to say we have to wait!! keep pressing and get angry with them and when you are proved to be right and when you feel up to it - go back and say I told you so and embarrass the socks off them. The way they are treating you (or should I say not treating you) is simply appalling. It appears their competence levels are lacking and if that is the case then I won't blame individuals, but as in the words of the AA advertisement you need to be put in touch with 'I know a man who can' Keep pressing for answers until you get some!!

Good luck

Macca

Welcome Tim,

take things slowly - this condition takes some adjustment but we are all proof that life goes on and it is to be valued greatly. There are some great people on here - I'm still finding my wway around some of the threads! i can't believe how lucky I was to stumble acreoss this site and how positive they all are!

Macca

Hi Claire,

you need soome proper answers. You need to be a bit more assertive to the point of being angry. You can always apologise afterwards if need be. You can't solve your problems if you don't know exactly what they are. Demand to see this consultant and do a bit of straight talking.. yes he's qualified and probably has more letters after his name than the Post Office, but he is still a human being and they can make mistakes. Doctors are not infallible, so don't be embarrassed, just go for it.

They 're playing with your life Claire, so don't be fobbed .

Good luck and let us know how you get on

Macca

Keep painting the trees John but don't forget to paint a path so you can find your way out of the woods!!

Always happy to support John, this is a great site and it will give you a fantastic lift on theose 'down' days. Just knowing you are not alone and there are people who understand - but sometimes struggle to spell - is a great comfort

Welcome anyway

Macca

Hi,

I had my SAH in September 2010. I too suffer rgreatly from fatigue. I played professional football on leaving school and played semi -pro until I was 38. I was still playing six a side until the day before my SAH at 55. I can't play any more but I can walk and talk, I can go shopping etc. Recovery is a tough road to follow but you can get there with help and support. If your man is a confident type and so forth, probably his confidence has taken a heck of a knock and it needs coaxing back. Sometimes doing things together is great, but maybe starting something together and then retreating, without him realising it, to let him finish the task on his own so that he can see for himself that he can still do it would be helpful.

As for the bedroom department, well as his confidence returns, then so, maybe, will the morning glory!

Hope you are both well.

Good luck

Macca

No problem, glad to help

Macca

Hi Alison,

hope you don't mind me replying, but this is a long game you are playing, patience is a virtue. unfortunately it can also be a pain in the backside whilst you wait for improvements, but they will come! I used the saying below the other day replying to someone else. It must have been here that I saw it "even the longest journey starts with a single step" and it is so very true. It's such a great saying and sums everything up about a SAH, but I couldn't remember where I saw it. Sorry for the plagiarism. Your partner is so lucky to have a girl like you rooting for him. My partner, Sandra, is also a gem and she has been there for me since I had my SAH in Sept 10. Not bad for someone who woke up and told the nurse I thought she was beautiful in front of my partner who I did not recognise at the time! Now we are getting married in September this year ( me and Sandra, that is, not the nurse!!!). So strange things happen inside brains and they take a long time to come out sometimes. So have patience, maybe keep a diary, and look through it from time to time and you will be amazed at the improvements occurring. They might not mean much to others, but you will recognise them and the fight that has gone into achieving them. Good luck Alison!

Macca

Thanks Michelle and Sandi K,

I am 56, rapidly approaching 57 and that will be three years before the official retirement age of 60 and I will have done 39 years. There will be a hit financially if and when I go, but I can live with it. It will be worth the hit for the improvement in my quality of life. May be I can do some part time work to supplement my income, maybe they will let me partially retire, but I am pretty sure I can't go on at the same pace as now enduring the pressure that goes with it. Thanks for your support.

Carl, I'm glad you are at peace with yourself, do you know that is the most important thing? Those people where you work really aren't worth the sole on your shoe if that is how they treat a person with your obvious work ethic, loyalty and values.

Always here to exchange views - let us know how you get on - if you choose to fight the battle, I'm right with you - if you don't, I won't judge but will be here to offer support

Good luck

Macca

That's what you should call yourself every day when you look in the mirror! Look over your report again Dawn, in the cold light of day and even get a close friend(not one you work with) to look it over as well to see if there are any additional points you can add in your favour or that you may have missed. It can be tough, but it can also be the point that makes all the difference when decisions are made!

I am really pleased to hear you made it through though - well done indeed Dawn

Best wishes

Macca

Hi Carl,

I know exactly how you feel. They are looking at you at work and thinking,'I can't see anything, he looks alright so he must be alright, he's just making excuses.' Carl, I went back to work too early, I am at my doctors again today with fatigue. There is nothing more debilitating than fatigue when it doesn't look like there's anything wrong and there is no empathy from those around you at work. So you are actually fighting two battles - one against your condition and one against the scepticism of your colleagues. I live that experience every day at work, but I did not take my own advice that I'm giving now, but I am suffering from it and I am looking at early retirement now as I can't keep up the pace even though I've given it my best shot. I manage a team of 16 people who think because I am their boss that I am invincible and nothing happens to me! How wrong they are and I have told them so but it doesn't go in because there are no scars or plaster casts or bandages etc.

Do what is best for you Carl, there is always a way round things even if it means re-shaping your life and the way you do things. Life isn't a rehearsal and if those around you are making it tough for you, then they are not friends. The only way they will really understand is when something similar directly affectss their own life. Talk to us Carl, we really do understand. Good luck

Macca

Seems like they're manipulating the circs to suit theirown purposes. Can you delay and take a union rep in with you? TAke as many notes as you can. Youmay be able to go for unfair or constructive dismissal. Either way, shame on them. Good luck Dawn!

Macca

Always Look on the Bright Side of Life - remember - even though you are nervous about going back to the same hospital, you will be going home again afterwards - now maybe that's something to be nervous about - all that love coming your way!!

Good luck Tom

Macca

Hi David,

Why don't you print off some pages and take them into her to read when she is well enough and maybe she might like to join the group. I certainly hope so. I've only been a member a short while but this site has given me such a lift I can hardly find the words to describe it adequately.

Thank your friend, she sounds a wonderful person. I wish both of them very well indeed, it's great to know there are such great peoplee out there and I can feel my own eyes welling up as I type.

Good luck and thanks for posting this story - it's truly fantastic!

Macca