Macca

Hi Teechur,

Not spoken to you for a while! I'm glad you appear to have found someone who knows about your condition. There are that many different types of doctor and hardly any of them will admit to not knowing something! Sometimes these guys can be more dangerous with what they don't know rather than with what they do know! The problem is we don't usually realise until it's too late! I'm sure they don't mean any harm! I'm glad to see you in fighting spirit and not just accepting what they say because they are a doctor - you know your body best - keep going until you are satisfied you are getting the right advice and if that means shopping around then so be it. I wish you the best of luck! keep us posted as to your progress!!

Best wishes

Macca

Hi Donna,

I've just seen this thread and the reply above. I am about to start hormone treatment with use of a diabetic type pen but filled with growth hormone instead of insulin. When my SAH was repaired, my pituitary gland was damaged and stopped producing growth hormone. I have since had it confirmed by two dynamic tests, one using glucagon and one using arginine. I think (but I'm not a doctor so don't quote me) that they gave me a controlled amount of these substances to try and kick start the gland but to no avail - a bit like trying to jump start a car with a flat battery, I suppose. Growth hormone helps you grow when you are a child but in adults it affects sleep patterns, muscle strength and stamina - I suffer chronic fatigue and as you say I feel rubbish most of the time. I have become accustomed to it but I refuse to accept it - it is very frustrating, I have to say. Have a look at the pituitary foundation website -it might be useful for you.

Hope this helps

Macca

Well done Vanessa,

Don't do too much too soon - your body has a way of telling you when you've done too much so please, please be careful out there! Maybe some quiet reading in a corner about SAH? Seriously, please take care, it sounds like you are going back early and I can relate to that and know how exhausting it can be.

Good luck girl. Let us know how you get on.

Macca

Great line David/Dapne/whatever!!

Wem, nice to meet you and welcome to BTG. I'm back at work and you will see that David is too. WHat I found happens is that you re-set your ambitions. before you were ill you probably wanted to outstrip everyone else, get a pay rise, get promoted etc.

Now I just want to get through every day. Doing that is my achievement, and it's more precious to me than anything I ever did before, and is a much bigger achievement in my humble opinion. One step at a time.

Have a great weekend, I'll try and get on here again tomorrow

Macca

Hi David and Carl,

great to see you two still chipping away and I can relate to all of what you are saying! You too, Mary B and Bev!

This week, the day after tomorrow I start my hormone treatment. just to let me know my body hasn't finished with me yet it has let me know this week that i am still riddled with fatigue and I am wiped out, my short-term memory loss has been in spectacular action this week as well and this morning my face has come out in some monstrous red blotches, presumably because i am run down after doing too many hours at work!! Can't wait to get to hospital on Friday - I just hope they've got the right answer and that it isn't all an anti-climax or worse, a bad dream (a la Dallas).

You keep counting Carl - but do it quietly mind. Inner shouting can be just as damaging as the real thing and frustration comes out in relationships with others - so chill and strike another pose in that hat. Fantastic Carl, I wish I was retiring too!!

David, you sound a llot happier and more positive these days - it's great to see. I know there are still problems, but they are manageable for all of us and we are learning how to cope better every day.

Mary B and Bev - isn't it great that we can share and halve our problems with some fabulous people who really do understand our plight? Keep on chugging away - the light is at the end of the tunnel

Best wishes to all

Macca

Hi Bev,

Two years and three months down the line, I still suffer with fatigue, shattered all the time like you say, but I am starting hormone treatment next Friday, at long last - yes I am a bloke and having hormone treatment - man i feel like a woman - I've cracked that one before - but when they repaired my bleed they damaged my pituitary gland which fires hormoness around your body so I am having to have replacement growth hormone which affects muscle strength, stamina and sleep patterns, so hopefully after next Friday I should feel more alive. They are giving me a Diabetic type needle pen, but filled with growth hormone instead of insulin and I will have to have that for the rest of my life apparently, but a small price to pay for a better quality of life I hope.

I still suffer with short term memory loss too and have the occasional balance problem, but I am back at work full time but sleep for England when I'm not there. I can drive as well.

I have to say I am fed up at being so damned tired all the time but hopefully there is light at the end of the tunnel for me now. It's been a long road back, mut my doctors and nurses have treated me brillliantly, I have to say. Wonderful people!!

Hang on in there lass - you'll get ther in the end. I know I am lucky when I see others problems persisting over a longer time than mine - we all tread different paths but the support is just the same - this is a great community on here. let us know how you get on - we will support you to get better!! Cos we understand better than anyone else!!

Good luck

Macca

Welcome to the world of BTG. the people on here are great aren't they? Sorry to hear this news, try to stay positive. I had my SAH 1st Sept 2010. Long slow recovery after that, I got married to my then girlfriend on 1st September 2012, she saved my life by getting me to hospital so quickly, and a couple of weeks ago I bought a small runabout, A Toyota Aygo only to discover it was first registered on 1st September 2010! How's that for irony! However, I totally understand your apprehension and it will probably be a long road back for you but the good news is that it can be done and with the support and love you have around you, it's nigh on certain - and the time passes faster than you think!

I wish you all the best - and give our regards to your Mum and daughter, they need support too, but their reward will be when they see yoou back at your best, let them never forget that!

Macca

David,

I think we're kind of running parrallel lives at the moment. Work is tough. You said it's wednesday but your body thinks Friday - i couldn't have put it better myself! I am so tired at the moment, I am sleeping poorly even though I feel dog tired. When I am like this my balance goes to pot as well and nausea is a recurring theme as well. On the bright side I start my treatment on 30th of November - i can't wait - I just hope it isn't an anti- climax.

Well done Win, Michelle and Dawn - we all have to keep battling on and beat this thing - and we will.

Oh to be in Hawaii - Sandi's lucky isn't she? I went there in 2003 - it's a wonderful part of the world.

It's only 7.30pm here but I have to go to sleep now - I hope Canadian Carl is ok too, i haven't heard from him for a while.

Best wishes to everyone, I really am so very tired

Macca

Hi Rachel,

Sorry to hear of the difficulties you're having. Have you tried ringing the hospital? Sometimes they have volunteer schemes where they will provide transport to and from or can at least put you in touch with people nearby who also visit the hospital and can provide you with a list. It's worth asking at least. CAB can also often help. I hope it works for you. Keep your chin up, you seem to have a lot on your plate at the moment. Let us know how you get on and if there is any further help or advice you need there's usually someone in this group who can suggest a workable solution.

Good luck

Macca

Stephanie,

Insanity? It's so insane that it's the sanest thing anyone has said? Why didn't I think of it first? Absolutely brilliant! Turned it right round to your advantage - well done girl and thanks for telling the rest of us. All the best ideas are simple, apparently!!

Good luck and thank you for making us see the wood - we couldn't see it for the trees!!

Macca

Sally,

Thank you for posting this. I am slightly envious but delighted for you. It also gives hope for the rest of us. May the light that shines on you shine on the rest of us soon - you first Michelle, sounds like you need a break and no-one deserves it more!!!

Macca

Hi Karen,

Welcome to BTG. This is the first I've seen of this thread. I am so close to you, I live in the Salford area and I know Tameside well, so I know the hospital of which you speak and I can't put what I think of them in writing on a forum such as this. There are some great people in there, but the management appears to be poor. My heart goes out to you and Jim, it can't be easy for you.

I had my SAH two years ago now. I am still recovering although I am back at work now. It was and is a long slow process, so perseverence and patience are two virtues you need in abundance. Keeping a diary is a great idea, not only for Jim, but for you. It is easier to see the progress when it is written down and can be a tremendous boost when you think things are moving too slowly or that you have hit a brick wall.

Don't be afraid to complain, but be mindful that it can be a double edged sword. You want to jog them into better action and help not alienate them to the extent they start taking things out on you. Try the reasonable common sense route first and then if that doesn't work, let them have both barrels.

Jim has undergone a terrible ordeal, it does not need to be compounded by poor care from those who are supposed to be expert and professional in these matters. Remember, Jim is still a human being, you and he have put an awful lot into the health system that pays their wages. It is not too much to expect a little back from that service now that you are in need of help. When I came round from my coma, I was talking gibberish and shouting at staff for two or three days afterwards but thankfully I came out of it in the end. I didn't have to have a shunt either, but I did have the onset of hydrocephalus, but that threat also receded after the third go at a lumbar puncture.

I wish you and Jim well Karen.

Macca

Hi Kris,

I am back at work, but it isn't all it's cracked up to be. I am back full time, but I get home from work and all I want to do is sleep as I am so tired. Like most people I do it to keep a roof over my head, but it sure as heck isn't easy. In fact it is very difficult most days. The back to work thread is testimony to that. Sometimes I am jealous of those who don't work because they can concentrate on their recovery full time. I would also take the view that this is an opportunity for you to explore other opportunities to see what else you are capable of.

If you are doing the best you can do, no-one can ask any more of you than that. What you do next will be different - not better or worse -just different. You will be surprised what you can do, but try not to keep comparing it with what you used to do, move forward. It's hard I know but we will support you - you never know, there might be an expert on here in your new chosen field! Change is very unsettling sometimes, but before you know it you will be in a new comfort zone and wondering why you didn't make the change years ago!

I wish you well Kris and will watch for your progress. Don't cry for what you have lost - smile for what you will gain!

Good luck

Macca

Carl,

Great to see you doing so well and on the countdown! Amazing to see that you're doing so well - I am so pleased for you.

David,

you've done brilliantly as well. I'm sure you've found it difficult getting back to where you are and although there might be glitches until you get the consistency back, what you have got now is the knowledge - and more than that -the belief in yourself- that you can do it.

I've been away for two weeks - on honeymoon! (post on another thread) This is great news to come back to - well done guys!!

Macca

Michelle,

My sports teacher once said to me 'try to win the race, if you can't win it come second, if you can't come second, come third, just be the best you can be, nobody can ask any more of you if you have given your best.' I've tried to live by that mantra all my life. I don't beat myself up because I can't win - sometimes I am happy and content as long as I did all I could. You are doing your best, but despite being hurt inside, you dusted yourself off and got on with it.

That in itself shows there is fight and feeling inside you. Be proud of that Michelle, don't try to be in competition with those others you mention - just be different and be proud of it. We can't all go down the same road if it is too narrow for us. We have to take a different road. Maybe if you look hard enough, the rainbow is at the end of your road, not theirs.

I'm proud of you Michelle, well done, you're doing just great. So smile, I think I can see one coming!!!

Macca

David,

what you've done and achieved is nothing shorrt of amazing. From where you were to where you are now is nothing short of brilliant. Are you sure you're not walking on a yellow brick road? You're turning into a hero! I am very proud of you for getting this far, well done sir!!

Don't overdo it my friend. I take my hat off to you.

I have answered on the SAH paradox thread.

Stay well mate!

Sandi, This has been some thread, well done for raising it, it has prompted so much discussion and support and I don't think any of us should lose sight of that - thank you!

Macca

David and everyone,

This is so accurate and relative to what we have all experienced. I find that my mind and my body are separate entities when they want to be but are inextricably linked at the most inappropriate times. My dictionary describes a paradox as an absurdity, an anomaly, contradiction and a puzzle. My condition is all of those things My mind tells me I am as fit as a butcher's dog but my body tells me I am decrepit. My body tells me I am in great nick and my brain tells me to 'sit down you've had enough.' Rarely do they act together, in unison, and when they do I regret it because I am usually so surprised by it I overdo things and then regret it severely later in the day. There just is no consistency, a paradox in itself.

David, you've hit the nail on the head and it didn't even hurt - but I've no doubt it will tomorrow. Great post, many thanks for this. Perspective is a great tool to help us understand.

Macca

Michelle,

Ditto to what Sally says, Dylan is lucky to have such an understanding and caring Mum - and you are lucky to have him - with your love and support he'll be ok, I'm sure

Macca

Hi Michelle,

Sorry for the delay in replying - I've only just seen this. Your problem is a tough one. I experience it too. Short term memory loss is a hard one to overcome. There's no guarantee this will work but here's what I try to do.

I think of this as:

"How do I transfer knowledge from my 'short term room' to my 'long term room' in my brain without losing any of it along the way?"

If I can make that transfer I have more chance of retention.

Step one: Do things in small manageable chunks

Step two: Associate names with something significant about that person or thing but that acts as a trigger to bring out what you want.

I find that it isn't that the information isn't in my brain, it's the trigger to bring it out that is missing.

So, something prominent or rhyming or a tune helps ie

Ruby Murray = Curry

One trick Pony = Tony

Blue shirt = Bert

Gimme, gimme a man after midnight (Abba song) = Jimmy after awhile of singing the tune you substitute Gimme for Jimmy and sing the song to yourself every time you come into contact with that person

Every time I try to remember you Michelle I think of a horse (no offence) because of the initials GG or Gee Gee = Goldfish Girl. That's how I remember.

Beach = Sandi

Credit card =Amex = David

Mustang = Sally

CC= Canadian Carl

Temps = Kempse

and so on - but don't try to do too much at once. You may need to repeat this a few times over the course of a few days or a week. It's abit like learning your times tables when I was a kid, but the use of associations seems to make it easier for me.

Like I said there is no guarantee but it seems to work a bit for me, not all the time because there are sometimes when I can't remember at all even with this method, but it takes a bit of extra effort but it's worth it. If there is something visual he can see everyday over a period of time that will eventually be committed to long term memory rather than short term memory. Ie if you ask him to tell you what is in his bedroom, I bet he can remember because he sees that everyday. I feel for you and your lad Michelle . What he mustn't do is give up, there will be some kind of solution, he just has to find the right one for him and adaptit for everyday use. There's no right or wrong answer, I feel, but hopefully over time, his memory powers will increase as he improves.

Three stages of memory, bit like a filing cabinet - memory, storage, retrieval. Put the right labels on the storage, a bit like when you store things in your computer and it's a bit hard to remember what folders you put the information in.

Above all Michelle, listen to him when he wants to offload.

Hope this helps Michelle. Good luck mate.

Macca

Hi Debs,

welcome to BTG. We're glad you found us too! We can help you but you can help us too, to have a greater understanding of this condition. Everyone has similar, yet different experiences but they all go to understanding this jigsaw - and there isn't anything more complex yet amazing than this thing called the human brain!

Your confidence will have taken a knock, but you will get it back over time as you will your abilities and talents. With regards to your stamina you will learn to adjust, we all have to some degree or another!

There are great people on here and we all try to help one another.

If you want to rant, let it rip and someone will always help - sometimes just listening is a help - great to have you on board

Macca

Carl,

I think your tale is brilliant - it must be the new hat! How ironic that they have had to come back to you, cap in hand, (sorry for the intentional pun) to do what you did before. It just says who was right and who was wrong without you even having to utter a word. Exquisite justice and a paradox of their own making!!

Enjoy your moment Carl, I can see that sardonic grin from here! c'est magnifique!!

Cathmat,you are right, money isn't everything but with a little planning and re-evaluation you can minimise the effect. At least you won't have the transport or meal costs etc and there will be loads of things you can economise on at home, or do differently or less often etc. Take your time - your health is so much more important than the money and you are worth more than all the money in the world - in fact you are priceless!

Do what's right for you Cath, make the decision that suits you and control your own destiny. You'll feel so much better when the control is in your hands and not those who think they know what's best for you. In this case, looking from the outside, this is just a case of mindset. In any case you may find something else, much lesss demanding but which may pay you to make some money up. let us know what you decide, may be we can help with some guidance/support etc

Good luck Cath

Macca

Hi Neil,

How can someone tell you not to worry when you've been through a SAH. Unbelievable!!! It would be on my mind all the time not just two or three times a day. It's all right saying don't worry about it when he doesn't have to live with it. Get some expert medical help Neil and don't travel abroad beforehand. Get written confirmation from your doc to say it is ok to travel and fly when the time comes.

Cor blimey - I just can't believe what some people say sometimes!!!!!!!!!!!!!

Good luck Neil

What's health care like in the Phillipines? Somehow I just can't seee it would be as good as here.

Macca

Well Mary,

I agree with you as we are sort of in the same boat with working and feeling exhausted. However, work takes every ounce of energy I have and doesnt leave much time for fighting with doctors or having fun. I get to use my days off to fight with doctors. Of the 6 or more that I have seen, none of them seem to acknowledge that fatigue is a part of an SAH life. Somehow, I ain't seein the light at the end ofthe tunnel. I think some of us will recover better than others and it is an indvidual thing. If you know of a magic potion or magic "pill" that will make us all feel better, please share as I'm sure many of us could use it. If we have CFS, won't that pill fix us?

Davey

David,

I know I've mentioned this before but get someone to check your hormone levels. I am deficient in growth hormone. When you are a child it does what it says on the tin - helps you grow - when you are an adult it affects your muscle strength and stamina levels and sleep patterns. All of this =fatigue which has been my biggeest problem since my SAH. When they repaired me they damaged my pituitary gland and I am now due to start treatment. I spoke to someone else who was back for a check up and they said it works really well. They get a diabetic type needle pen but instead of insulin, it is filled with growth hormone. It's got to be worth asking about. maybe one of the local universities are doing a study and that would help keep your costs down. Just a suggestion - hope this helps you

Macca

Hi Jus,

I had my SAH almost two years ago - coiled, unconscious for a week, short term memory loss, headaches, balance problems, didn't recognise anyone when I came round, damaged pituitary gland, chronic fatigue etc etc. It's been a long road back. On 1st September it will be two years exactly. I am now back at work full time, on 1st September, I get married again, I am going on honeymoon, I have been supported brilliantly by family and friends and none more so than this great bunch of people on this group. They are all over the the UK,USA and Canada, yet I feel they are with me, even when I am not on this computer. You know why? They welcomed me with open arms, they didn't judge me and above all, they have lived through this terrible experience and they understand. They get it. We all have different problems because the effects of what happened to us vary by degrees, but we all agree that it was terrible at the time, the recovery is a slow and arduous process for all of us. We support each other and gain much strength through that. I thought you said this other person is a 'workmate.' If that's the way she behaves, she isn't a mate, she's just someone you are unfortunate enough to know. I hope she just doesn't understand because you can educate her and then maybe she will see and may become your friend. Don't write her off because of her ignorance. Educate her. If she is a friend she will listen. If she will not listen, get her out of your life pronto. This was a brain injury to the very core of your being. You need support, not irritation.

I, - we all on this site wish you well with your recovery, it can seem a long and lonely path, even when there are lots of people around you, but we who understand your problems, who have lived the experience and felt the pain you felt and feel now, are with you and we are here anytime you want us to be. We will guide you through this and those of us who reach the end before you will wait for you.

Don't bottle your feelings- get them out there and take the pressure off yourself

Macca

Hi again everyone,

sorry I've been missing again recently, I've been incredibly busy! So, Dawn, Cathmat, GG Michelle, Winb, Sally, Sandi, SarahLou, Louise, Mary, Carl, David, and everyone, I've missed all your recent posts until I had chance to look today!

Dawn - very glad for you, well done,

Carl - love the new hat - is it one of six thinking hats?

David - glad things are looking up for you - how did the night out go?

Sandi - glad you are still being the sounding board, giving out great advice I see, but how are you? make sure you look after yourself in all this

GG - positive as always

Sally -keep chugging with that appeal - make sure you log everything they do wrong and bring it up at the tribunal

Glad everyone else is ok! Sorry if I missed anyone - bit ring rusty!!

Macca