Macca

Daff, Carl, Mary, Sandi and everyone,

All well said and I doff my cap to all those wonderful efforts you are all making. For me, the thing that has been a constant is fatigue, and as you say Mary, being less able to cope with stress. I am back at work full time and was has floored me occasionally is that conditions/ilnesses, call them what you will, seem to morph into something else over time, ie headaches, to nausea, to aching and sore limbs, to shaking and balance problems, to excessive forgetfulness etc.

I've suffered all of these at various times. Or is it just me? If I've over exerted, that's me wiped out for a day or two!

Macca

Michelle/Dawn/Mary/Davida nd everyone else,

I think working creates added pressure, but then not working replaces it with another but equally telling pressure - no money! I suffer now with nausea, heaadaches, light-headedness, poor balance, poor memory but I am able to work because I can sit at a computer all day.

Anything physical floors me and when that happens I could give Rip Van Winkle a run for his money! We all suffer this together it seems, but Mary you seem to have pain worse than I do and I feel for you, I really do.

On a lighter note, my wife Sandra said to me a few days ago when I felt ill "Why don't I tread on your foot and take your mind of it for a while?". I won't tell you my reply!

Stay well, stay strong everyone, we're stronger together than on our own!

best wishes to all

Macca

Sandi,

Agreed, it is terrible, I didn't even remember having a phone on me - I have two, my own and a works one! Even if I had I'm not sure I iwould have known who to ring anyway! That was my worst experience - I have had others but not as bad. Touch wood, I seem to be ok at the moment, I hope that's not tempting fate. It all seems to be linked to fatigue and stress though!

Nice to hear from you!

Macca

Tulip,

I know this is a tough time for you, but don't go through it alone. Stay in touch and share your problems, we will do our best to help you through. Good luck. I wish you all the very best. Look after yourself - and your Mum - she needs you now more than ever.

Macca

Hi Gary,

I had my SAH September1 2010. I was coiled. I advised DVLA of my condition and I did not drive again for about six months. DVLA did not take my licence off me but advised me not to drive until my doctor said it was ok to do so. I got a letter from my doctor confirming I was ok to drive and DVLA said it was ok. The thing is - keep in touch with them and advise them of what is happening. I think they are much more willing to work with you if you do that. When I started again, I did short journeys on quieter routes and built up slowly. I did not drive if I felt the least bit unwell. Do it in moderation, in stages, remember driving takes up a lot of brain power, it will tire you, and you are in charge of a ton of fast moving metal - one slip by overdoing it may have wretched consequences, so don't risk it. If you are going any distance take regular breaks and/or a second driver with you - or get the train!

Good luck Gary.

Macca

Iola,

A problem shared and all of that...... Don't worry too much, it seems it happens to us all at some point. I won't say you get used to it, but you do understand more that your mind has these aberrations from time to time, and it all appears to be your defence mechanisms kicking in when you've done something your body doesn't like any more. I hope your night experiences abate in this knowledge and that you get some more sleep - it is so important but so very difficult to achieve, most of us seem to have trouble getting uninterrupted, stable patterns. Good luck!

Macca

Vanessa,

If it's any comfort and I am not so sure it is - i am now 2yrs 8 months out of my SAH and I still get dizzy sometimes, particularly if I have exerted myself, like running for the train - or if I have had a long day and am tired. It makes me light-headed and that panics me because it signals lack of control kicking in. Being aware of that is frightening. I also find my self talking in my other language - jibberish - and making no sense at all. Then I can''t remember what I said or even who I was talking to. It is very upsetting when it happens and makes me question my sanity at times - it's only the support of my partner and the people on here who truly understand how undermining it is to your sense of well being. Only a couple of weeks ago I had to sit down on a bench in the middle of Manchester. I didn't know where I was and I had to wait a while until my memory returned, which thankfully it did - I was really panicking for a while. Thousands of people around and yet I felt so alone. It caused me a lot of angst and still does now if I dwell on it! Vanessa - your job is intellectually taxing, as is mine, but less so. Take regular breaks and don't do too much. Listen to your body and stop when it tells you to. I should take my own advice more often too!!

If I could just avoid fatigue, I might be alright!

Iola - hang on in there, you're doing just fine!

Macca

Thanks to everyone for sharing their thoughts. It lifts me. I am trying now to get out. I suffer at the moment with waves of depression, fatigue and lately some headaches have started returning. I go on holiday next week to Benidorm in Spain - just for a week - not helped by my workload, nor some of those who should know better. So don't worry about me if you don't hear from me - I won't be able to hear you because of the sun on my back!

David - yes my scheduled retirement is in 2.5 years, but at my current rate of attrition, I'll never make it - that's why I'm exploring early retirement. There might be a slight financial hit, but if it saves my sanity and relieves the mental pressure it will be well worth it. Sometimes I have to work away and that is why there are some breaks in my visits to the site.

Dawn - thanks, it sounds good - I'll see if I can get it!

Mary - keep trying - I'm sure an opportunity will come - keep your eyes peeled!

Wem - i think sometimes you get to a certain point in your build up and then you hit a kind of ceiling - that's your body telling you your progress is too fast and please slow down until you are ready to go again. I've hit it several times - like now for instance.

Michelle - great words again!

Sandi - I'm a bit down but I'm ok. It's bank holiday weekend so an extra day off - that's good so only four days in next week and then on holiday for a week - can't wait!

Best wishes to all - you all really do keep me going - since I joined this site, the support has been un-wavering, un- faltering - if I have blessings in my life the support of friends on here are at the top of the list - thank you one and all

Macca

Maryb,

thank you for your kind words - but I don't feel like I am helping enough and wish I could do more. I never thought I had that effect. I'm a bit of a physical wreck now, I used to be quite athletic (though I say so myself - and no, I haven't been looking in one of those warped Blackpool mirrors!), but now I feel quite frail and puny. I get tired very easily even though my hormone treatment has worked, I am still not back to normal - when was I ever? , my Sandra says!!

Thanks Mary, that almost made me cry - not quite, but almost!

Win - you really are an inspirational character -despite your experiences you have an indomitable spirit shining out, rapier fashion, like a magnesium flare in the dark. I take my cap off to you, but I can't think of a song at the moment - sorry!

Stay strong ladies!

Macca

hi Daffodil and David,

yes it's a familiar story isn't it and many of the statements resonate with us. It is difficult to get the message across to those who haven't suffered because you can't see, touch feel or smell our condition, but we definitely need more people to recount their experiences to get the message out there. Especially about the longer term after effects and the virtual lack of support mechanisms to help us in our everyday lives, and with emotional support to cope with the after effects of the trauma. The degree of injury is also very relevant and although I am very lucky to have made the recovery that I have, my heart goes out to those less fortunate than myself - even though I have issues, they're not as bad as some. I wish i could help more - any suggestions anybody?

Daffodil, thanks for sharing this story with us!

Macca

Dawn,

That's a lovely saying and very astute.

The best exotic marigold hotel eh? Mine are yellow, not pink! Marigolds that is! ha ha! What colour are yours? I regret to say I haven't heard of the film - who's in it?

Macca

Hi David,

I am contracted to work 37 hours (42 if you include lunch). In reality I do quite a few more but don't get paid for that. I travel a lot. That combined with the work just eats my stamina like a Hummer drinks what you call gas! It's tough, so I am looking for a way out now. I've had enough, and at the end of the day nobody really thanks you for your efforts. Just do what you can do for you!

There I go giving advice again, Sandi, where are you?

I'm trying to follow my own advice, I really am, but sometimes it just seems like an unachievable wish list! getting new jobs in these austere times isn't as easy as it once was! But I'll keep trying!

Good luck David!

Macca

Mary - thanks for thinking about me!

MelS -hello, nice to meet you! Glad I made you laugh. It seems that on this site we all have something in common and although distance is between us maybe we're not as far apart as we think! (metaphorically speaking of course).

Sandi - it's uncanny how parallel not only our lives can be but also our thinking! Keep giving your advice, there are many who appreciate it even when they don't reply - if nothing else it lets them know they are not alone and that can only be a force for good! Thank you for being there for the rest of us! A gold star for you!!!

Macca

Hi Sandi, Dawn,

sorry I'm a little late with this. How ironic it seems to be that when looking from the outside we are all great givers of advice but when we are on the inside we cannot see a clear way out and we do not take our own advice that we so readily give to others. I am a culprit here as well. Remember our health is what matters above all else, but there are businesses to be run and our bosses can be ruthless in pusuit of a bonus cheque and targets. They often can't see our problems - you can't see it,touch it or smell it - but it's very real to us! We also have bills to pay!

I think I am going to look for something else to do that isn't so demanding.

I torture myself trying to do what I could do before I was ill, but the intensity and pressure makes me think it is no longer worth it. I think I need to get real and more importantly - get out!

Best wishes

Macca

Hi Kris,

I never thought of it like that, it really put a new perspective on it for me - thank you! Just goes to show we all have different thoughts, our experiences are different - but the same, if that makes sense! Maybe our brains are opening up new ways of thinking - re-wiring themselves. However, it seems that for some of us, the pain, if it existed, was brief and it ebbed away, sometimes only returning, if it did, when consciousness re-awakened our souls.

It seems passing is a peaceful process and only sometimes painful in differing degrees in the approach!

It is very re-assuring so many of us seem to be saying we are no longer afraid of death - that must be a comforting thought - even for those who have not had our experience!

'I bless the light, I bless the light that shines on you, believe me' 'Days' by The Kinks/Kirsty MacColl great line from a great song.

Best wishes to all

Macca

Hi David,

I can tell you're ok, you keep going on about the glass and not the blood! Crikey, it must have been worrying when you were thinking 'what might happen next?' and then relief when the answer is 'I'm ok, nothing's happening'.

Really glad it's turned out ok, and helps the rest of us not to worry too much if we bang our heads! Phew!!!

Just hope you can get all the blood and glass out of the carpet!

Macca!

Hello Rachel,

Sorry to hear about your loss. I had a headache like I've never had before. I was painting radiators with radiator paint and I thought it was the fumes that had caused it. It wasn't, of course! However, I had to lie down, an ambulance was called and I lost consciousness on the way to hospital and didn't wake up for the next six days or so. It was like fading away or drifting into the distance at sea, away from the hustle and bustle of the shore and the pain went with it. I, too am no longer afraid of death itself, I think it is just the way it happens we should be afraid of if it is before our natural time ie in an accident or something. A natural event like your Mum had almost has a calmness, a serenity about it as your body shuts down. Your Mum would have been peaceful as she passed, I am certain of that. Please don't dwell on that one event. Remember all of the good, happy times and remember the privilege she afforded you to be a part of her precious life. She could give you no more than that. What a lady, and what a fabulous legacy she left, in you.

Macca

Hi David and all,

I've not been on for a while, but this is good news to come back to and gives us something to hang our hats on. I asked my own surgeon in the aftermath of my operation two years ago and he said much the same thing - so that's two opinions. let's hope I'm still around when the next two come in ha ha!!

David, great to see you still on the ball and encouraging lively discussion and debate. Hope you are ok my friend!

Macca

Hi,

We won our appeal on 2/1/2013. Still not had the money back yet though. We had similar experiences over the phone, saying they hadn't received letters or had calls etc when we knew they had. So start logging them and keeping copies of letters. I was able to demonstrate they had received letters and calls when they denied it. On the appeal, they had only considered one medical condition when my step daughter had five - yes they missed four! The law had been applied incorrectly - again they applied a regulation on the basis they had tried to contact her by phone - they hadn't - the number they said they rang my stepdaughter on was in fact my wife's and there were no missed calls on the day in question and no voicemails or texts - porkies on their part.

In one instance they said I had received a letter that gave me the decision on the back of it with the reasons for disallowance. I told them the letter said the reasons would be sent out by separate letter which we never had. Embarrassingly for them, they asked me to send it back in so I did - and I got a letter of apology from them.- They didn't even know what their own systems had sent out. How poor is that? The tribunal loved that one!

I've written to the ombudsman now - still fighting but if you can show their administration is poor as it was in my case, you've a chance. We have to keep shouting to get things changed.

As for your doctor - that is poor. try your hospital doctors? or go and see a private doctor and pay for a letter

I wish you well.

Macca

Hi,

1) check the laws they have applied in your case. They don't tell you automatically - you have to ask. I complained that it is not fair and a breach of Human Rights Article 6 right to a fair trial which applies to civil (appeal tribunals) as well as criminal cases. If they haven't applied the law correctly then their case has failed even before you get onto the points scoring mullarkey.

2) Go through the points scoring conditions and score yourselves according to the conditions set out there. If you score yourselves as 15 or more points then you have a chance. Get a letter from your doctor to support your own score if you can. Remember, their doctor doesn't know you and he only supplies an opinion - the same as your own doctor (who knows you)

3) If your med cert says unfit for work then that is what it means. There is a conflict with their opinion already. If the med cert says can do limited work then that's diffferent but if it says unfit for work then that is what it means - let the tribunal decide.

4) Turn up for the hearing -if you don't you will almost certainly lose. DWP are losing 40% of appeals according to the published figures I have seen so you have a chance.

5) if they rule your appeal out of time write to the Social Security Ombudsman -details on the net

I've just won an appeal for my step-daughter by doing what I've listed above. Hope it helps

Good luck

Macca

Hi Doodles,

I was coiled so I have no advice on that score. However,, Sarah Lou''s advice for you to keep a diary is excellent and if you are unable to do it yourself at first get a relative to do it for you. Sometimes you will think you are not making progress, but really you are and looking at the diary will make you very aware of it and it will boost you so much. Good luck with your op I wish you the very best.

David,

I can't imagine what you have gone/and are going through but keep going, I think you and your other half are amazing. Keep believing, the support you are obviously giving each other is a strength in itself - don't underestimate it. Good luck.

Macca

That's just me Michelle, my Mum gave me a conscience, but that's what sets us apart from others and I wouldn't have it any other way!!

I hope you and Dylan have a great time and all things improve soon for you both!

Macca

Thank you all,

The selflessness of people here is truly magnificent and it is heartwarming after you read and hear of all the bad things going on in the world. I've been thinking about these posts all night and this morning and I must confess I am now on a bit of a guilt trip at feeling so well when others don't and I really wish I could do something about that and help everyone. However if all I can do is give others hope and belief, then that is something, at least.

So Mary,Michelle, Win, Daff, Bev, Dawn, Sarah Lou, Dr Lin lin, Sandi and not forgetting David(Amex) and Canadian Carl and everyone else, too many to mention, here's to a wonderful festive season and my sincere best wishes to you all.

To those of you still suffering, rest assured that I will be thinking of you and wishing you improved health and wellbeing over the coming year

Best wishes everyone - have a great time!!!!

Macca

I am teary now as I write this. Thank you all so much. I wish I could wave a magic wand and make everyone better! I am back at work full time, my treatment is working and I have a wonderful new wife and my own family appear to have come through their own troubles. I think this may be the best Christmas I will have had in many years.

Merry Christmas everyone - stay positive, believe in yourselves and the belief of others will follow.

Thanks Michelle, Win, Daf and Sandi. I hope I can help others over time. What a fantastic bunch frequent this site....

I will raise a toast to BTG on Christmas day when I have my Christmas Dinner. If we all do that we can be as one despite the huge distances between us all.

Have a great Christmas Day!

Macca

Hi everyone,

This thread has come at an opportune moment. I have been on this site for around two years now since my SAH on 1st September 2010. Some of you will recall I had a damaged pituitary gland and that I was to have growth hormone replacement therapy. Well I finally started it on 10th December 2012. I take it by injection every day and I have to say the improvement in my condition is nothing short of remarkable. I have my evenings back, I'm not asleep all the time, my concentration is better and I genarally feel almost normal. I still have short term memory loss but even that doesn't seem quite as bad. I have more stamina and strength. My headaches appear to have stopped. A couple of days ago I was in the kitchen, preparing a meal, when all of a sudden it hit me. The enormity of what I had been through was at an end. I wept.

And then I wept some more. Even though I am a man and big boys don't cry, I am afraid I did and I am not ashamed to say so. My life has changed enormously. I am so grateful to all who have helped me especially my wife and the medical team at the hospital. The part played by everyone on this site supporting and understanding has been truly magnificent. This is such a wonderful site and in my darkest days it was to here that I turned. You didn't judge but you understood and provided me with the platform to get through this awful, awful time. Thank you so much to all. It's been a long time coming and I have to inject myself everyday for the rest of my life, but I didn't quite realise how much I had missed normality. I think I am as well now as I am ever likely to be. So here is your tale of someone who gets better or as near as is possible. I hope it gives you strength and belief that there is a chance for you all.

I am,indeed, a lucky man.

Merry Christmas everyone.