Macca

Hi Carl,

sent you a PM. Only 390 day to go now! That should make you happier!! Resolve to make the new hat into a new you! There is a book called "Six Thinking Hats" by Edward de Bono ISBN 0-14-029666-2. It is sold in the USA and Canada. It sounds as though it would 'be right up your street'! I'll send you details. I found it to be very interesting.

Keep chugging away Carl, you are nearer the end than the beginning, don't give up until you finish the trip. Just make sure you decide when and where to finish it!!

Good luck

Macca

Brilliant David,

I'm unbelievably happy for you!! Well done sir, I doff my cap to you!! Great poem, what a way to mark it after all the trials and tribulations. Keep going David, you've just made my weekend mate. Superb news

Macca

Carl,

you have a knack of putiing your finger right on the button. Maybe it's a body clock issue. Sometimes I sleep when I should be awake and then I'm awake when I should be asleep!! Either way it can be troublesome to deal with. I have also had bouts of apathy but I think this is down to a bit of depression sometimes in my case when I think I don't care - or maybe I've just put some things in context and things that were important before are relegated to a lesser position.

When I go to work I park in a car park about half a mile away from my office so I have to walk there in the morning and walk back for my car in the evening. I also make a point of going for a walk at lunchtime, to stretch my legs and clear my head.

You are right though, once something is in your head it keeps going round and round and it can be hard to let go but you have to make an extra special effort to dispel its creeping importance before it gets out of control. Talk to someone about the issue if you can, usually I find when I do that, the other person has put a different slant on it and suddenly it doesn't seem so important anymore and I then wonder what I was worried about. That is our unfamiliar minds playing tricks on us and it worries us because we forget that it is different to how we were pre - SAH.

Interesting post this Carl and you make some good points too David, as usual.

Win, can I have a pint of what you are on please - you are crackers but you always make me laugh - good on yer girl!!

Macca

Hi Everyone,

I watched this on i player. The statistics were quite startling weren't they? Maryam got some things spot on and others were jumping about a bit from subject to subject - but isn't that how some of us are - jumping around looking for answers from anywhere we think we can get a handle on our problems?

The operations made me feel a bit squeamish. I had coiling done and watching them made me think it was Dynorod in miniature!! It's no wonder that some who have to undego clipping suffer some wicked stuff afterwards.

The one common theme, throughout, I thought, was the angst and the question 'Why'

It was quite obvious that the experience had a profound effect on Maryam, perhaps because she was in a protective shell of a wealthy background and a previous life free of major problems and this knocked her off the perch with a jolt. She seems a lovely lady, but shocked that anything like this could happen to her. Ill health is no respector of wealth or background. Still, I identified with a number of her problems and some of her perspectives and I wish her well in her recovery. I wonder if anyone told her about this site - I don't expect so, do you?

Keep well everyone

Macca

There's too many for me to mention everyone individually. Thank you for everyone's support, it can be difficult sometimes, but I get on here when I'm down (and not asleep). I have some more tests on 27th of this month, until then it's just keep plodding on putting one foot in front of the other etc. Easier said than done some days!

Sandi, thanks for asking, I'm not doing too badly at the moment, still at work, 37 hours a week! By Friday I'm bushed!!

David, I'm truly glad to hear you've started that diary. I'll buy the book when it comes out!!

Win, Cathmat, Sarah Lou, Kempse, Sally, Oceanside gal, Teechur, Mary, Keith and everyone, thanks for all your posts, even though it's impossible to reply to them all, I read as many as I can and they give me such a lift, I can't really find the right words.

I sit here reading them and I say to myself:

'that's how I feel'

 'thats what I thought'

 'So you've been through it as well have you?'

and so on, so thanks for your understanding and thanks just for being there everytime I need you

Bit tearful now, I'm going now, back later or tomorrow

Macca

Sandi,

That's real progress, let me know how you get on - well done indeed!!

Cathmat and Sarah Lou

- it's good to hear about you too, extra half hour or not, that is an incredible achievement and am so pleased you are able to do it, brilliant!!

I hope you are all coping well - but please listen to your own bodies - if it becomes too much back off - listen to me, old Mr do as I say not as I do!!

Going now before I fall off my perch!

Macca

Pete

All you can do is be there help when she needs it and back off when she doesn't.

Patience is a virtue - it just feels like a pain at times. Your partner will be on a bit of a roller coaster at the moment and you need to learn to judge the ups and the downs. Provide help when she's down and encouragement when she's up. Above all, listen to what she has to say not just with her mouth, but learn to read her body language also. There'll be times when she says she isn't tired because she doesn't want to be a burden, but her body language will be a giveaway. Don't ever think she can work her way through it - she's had a brain injury and it doesn't work that way anymore. Even when you think you are doing well, your body has its own inimitable way of telling you to slow down. Let her do things when she wants to not when you want to. It's an adjustment and a bit of a culture shock for you but you need to do it for HER.

It will seem like all give and no take for you just now but the balance will slowly return. There are no shortcuts- only understanding

You are observing it - she is living it, please remember that. And when its hard and you need support please remember us, we are here for you too!!

Good luck Pete

Macca

Hi Caroline,

yep, I've got all of those. My SAH was Sept 1st 2010. I managed to hang on to my job but it is very hard going and I sleep for England. If there was a gold medal for it this summer I'd definitely be in the running (or lying down!). I am also sensitive to artificial lights, particularly if headaches are nearby. I'm n9ot sure there is a timescale for getting totally better for any of us. All seem to be experiencing different things and going at their own pace. It's very frustrating and the angst is the same whatever stage you are at. Just keep chugging along doing the best you can. Managing your condition seems more achievable than eradicating it, but keep having a whinge and a rant. It does you good to get it out of your system and we have all lived it on here. This is a great place to be and we're glad you found us. Keep posting.

Good to have you on board.

Macca

Hope they're not doing it on the back of taxpayers money paid to them. I notice in the newspaper article they lose 40% of appeals so it is worth doing.

Macca

Here's a link to the Guardian newspaper about a judicial review re mental health issues and the Work Capability Assessment

http://www.guardian.co.uk/society/2012/jun/29/judicial-review-work-capability-assessment

Hope it helps

Macca

This is what I've discovered - we're going through this with a family member - but fight the decision, it is the only way to get it changed.

1) Always appeal

2) insist on doing everything in writing ( they try to get you to do it all on the phone now - if you do ring insist on a transcript of the call - you'll be amazed at how many times you get lied to when you examine it) Courts and tribunals love documents. When it is in writing it cannot be denied what has actually been said.

3) Complain about any inconsistencies and do it separately. They pride themselves on good customer service and complaints affect their standing. Your letter must say 'this is a complaint' or they won't count it as one. I've put four in so far. Their initial letter said they would send an explanation in a separate letter. To date we haven't had it and complained about that, How do they expect me to appeal if they haven't told us why etc? In that same letter they said further down that I had to ask for the explanation, so I complained about that - separately so it counts as two complaints, keeps them busy and puts them under pressure for a change! Now I've complained because they still haven't replied two weeks after my last letter - it getss registered as another complaint and weakens their good customer service rubbish

4) If on the phone, always complain about the amount of time you had to wait to be put through and that you had to explain the whole thing to the call handler again and that the service is not good enough

5) Always ask for the all papers in your case from the decision to the legislation, case law, internal guidance, memos

6) The medical is conducted by a doctor. It is expert medical opinion. Their doctor is employed by ATOS, a french company and they get paid by how many they get off the books. question their impartiality in your complaint/appeal Get your own doctor to contradict their opinion by saying you are not fit to work, they know you far better than any doctor of theirs

7) Write to your MP and the Minister responsible for this, currently Maria Miller the MP for Basingstoke - they hate MPs enquiries

Keep a diary of what goes on - record everything and keep copies of everything

9) Argue the toss about everything - they hate it, but they started it by being unreasonable - be unreasonable back

10) In your letters put in the effect it has had on your life, thedesperation, destitute etc it gets read out at the tribunal and embarrasses the life out of the Department

They found my relative fit for work - amongst other things she has, she has cerebral palsy and scoliosis (sideways curvature of the spine) - Enough said - fighting it all the way cos she can't do it herself, let alone go to work. If we lose it won't be for lack of fighting, they can't be allowed to get away with this - we've all got to make them see sense - they are picking on the wrong people

Good luck - hope this helps - will let you know the result when we get it

Macca

1) Always appeal

2) Always complain (ie initial letter said an explanation would be sent under separate cover - appeal period has now passed and still haven't had it so complaining about that and how do they expect us to mount an appeal if they haven't told us fully why the benefit stopped)

3) Always copy your MP (and the MP for the benefit you are claiming) in. They hate MPs enquiries.

4) Always ask for a full explanation of the decision including legislation and relevant sections, case law that relates directly to your case

5) If your situation is the same as before ask why the difference and what is the change? Then dispute it.

6) Ask for the name and qualifications of the doctor that examined you.

7) DWP use a French company ATOS to carry out the medicals - question their integrity and their motives for finding people fit for work - ie is it because they get paid for everyone they find fit? Hardly fair if that is the case? Are they biased?

Get yourself a welfare rights worker to represent you

9) Doctors supply 'expert medical opinion'. Get your doctor to dispute their doctor's findings - it is only opinion after all and your doctor knows you far better than theirs ever will.

9) Ask them to disclose all the documents in your case, including internal notes and guidance used - you can ask for this under Data Protection and Freedom of Information

You may or may not win, but it will keep them busy and you will get a full explanation for the decision so at least you will know even if you don't agree

How do I know? Just been through the same process with a family member!! Still waiting for the tribunal to happen so I don't know what the outcome will be - was just determined not to give up and to fight the decision. They found my relative fit for work as 'you don't have any limited capability for work' - she has cerebral palsy. Enough said. Hope this helps - if it doesn't well at least you tried and it will keep them on their toes

Someone just said to me nappies(diapers) and politicians should be changed regularly and both for the same reason!

Good luck

Macca

Hi CFW,

Welcome, in your darkest moments, this site is the biggest uplift you can get and the best place for true understanding of what it is like to live and breathe SAH from the inside as a sufferer and from the outside as a carer.

I think the first thing to realise is that every case is different, yet the same. The severity of individual conditions varies greatly, yet the mental anguish is the same because the condition has such a devastating and debilitating effect at such a personal level. Also, other outsiders will not appreciate the problem because you look the same, they can't see scars or broken bones. It's like looking at a computer that's had its insides ripped to bits, but you can't tell that just by looking at it. Only when you try to switch it on do you realise it isn't what it seems. You've got a different engine in the same model now and it will take some getting used to. You have now embarked on a long journey and as someone said on one of these threads - even the longest journey starts with a single step - well done for taking it!! Don't look back too much, just keep going and before you know it you will be nearer the end of the journey than the beginning. Sometimes it will be gruelling but the greatest rewards come from the greatest efforts. If it is hard, get on this site and tell us about it - we will support you with all we know. I had my SAH 1/9/2010. I'm back at work now - it's hard but I'm there. I still suffer with memory problems, my pituitary gland was damaged in the operation to save me, I suffer headaches, and light can be a problem for me and sometimes means I wear sunglasses when others wouldn't contemplate it! But I'm here and I'm still fighting. Your guy needs some help right now, but as time goes by that will become less. Keep that diary, as Dawn suggests, you will be amazed as time goes by at the improvements when you read back over it. I feel for you right now, as I'm sure anyone who has read your post does. Talk to us, let us share your burden and also your 'good' moments too because they are just as important. Encourage your partner to do small things but don't overburden him. Praise even the smallest successes, he needs confidence building. He probably is having to re-learn things he used to take for granted. It's hard to take for him and for you, but he can do it. He's had a shattering experience - you are his glue

We know

We understand

We are here

For both of you

Best wishes

Macca

I seem to remember that when this non-mandated crew got in, they said they wanted to support people who 'do the right thing.' How does cutting support for those who do work and increasing the number of hours needed to qualify for WTC do that? Seems to me that many who can't increase their hours to 24 will quit because they can't afford to live and will go on the other benefits instead.

Madness, I call it. Also cutting benefits for the disabled, closure of the 'Remploy' factories because they're not all making a profit. Well, excuse me, but I thought the idea of Remploy, who use a disabled workforce, the idea was to promote work amongst the disabled and to give them a worthwhile place in society, to be able to make a valid contribution to society and feel proud about who they are and what they do. Not to make a profit necessarily. Even if they make a loss, the powers that be should step in to help or allow concessions to be made, not close the factories.

The politicians said they want to encourage disabled people to go into the mainstream of employment. Well, I don't know about you, but if I was running a business, why would I employ a disabled person who produces a couple of items an hour when an able bodied person produces ten? It just isn't going to happen.

Most of the people who've been moved out of Remploy are still unemployed and have no prospects due to the callousness of these new policies. It's almost going back to National Socialism of the 1930's by singling out the most vulnerable in our society and picking on them. What's next - SAHers? or is it already happening?

Good to see you around GG and Sarah Lou.

Macca

Hi David,

I'm as well as can be expected. I hope you are well too!! I've come to a conclusion though. We're all getting older and we all experience the same things roughly, just at a different time. Our experiences are the same, we just take something different from all of them and we all cope in our different ways with the same things. Our defence barriers go up and we take the blows as they come. Some of us feel them harder than others especially if we are caught at a low ebb and others we just bat off into the distance and get a home run.

Let's get on with life and have some fun - laugh at the difficult bits, listen to Sandi's advice and sing Win's songs. Sure we'll need help sometimes but that's what we're here for isn't it?

I don't want to be down, I want to be up and I'm going to be. Life is for the living, those who are down for whatever reason, don't want us to be down as well.

Am I high enough up on my soapbox now - I can see your house from here!!!

Sometimes I think I'm nuts!! Off to bed now, have a great day tomorrow everyone!

I can't believe how busy it is on these threads now, haven't had time to read them all - I'll try and catch up at the weekend

Macca

Sandi,

thanks for asking about me. Yes I am very tired - got up at 9.30 am this morning - not too bad you may think until you realise I went to bed at 7pm lastnight, missed the football as well, again!! Also, one of my staff was returning from Leeds to Glasgow last night and broke down on the motorway - had to get the breakdown services out to him. He texted at 10pm - my phone woke me up - to say he had arrived home safely. That was a relief, then I was asleep again within seconds!! But he's ok that's the main thing!!

Work has been tough this week, lots of pressure and to cap it all, on Tuesday, a colleague I knew from way back, went to lunch, was in the baker's queueing, said he felt ill and feint, fell forwards and died almost instantly. They certainly reckon he'd gone before the ambulance arrived. It's believed to have been a heart problem rather than a brain injury. He was 53, didn't drink or smoke and helped to run the youth academy at his local professional football club.

He lived life to the full and he did things in the right way and instilled the right family values into his own children and those he taught football. He was also very good at his job. He was, as they say, as fit as a butcher's dog. He was a lovely man and we'll all miss him. Sometimes we don't know why these things happen and it makes me think, pass me the whisky and a big fat cigar, but I know that's not right!!

Live for today and make it count.

Naturally, I am a bit down, and concerned for his family, but I'm still here and I'll be ok. There I go setting things in context again!!

Hope you are ok, and all the others too,

Macca

Sorry I haven't posted for a couple of days. i'm back at work now and I'm absolutely knackered. Got to go to Birmingham tomorrow - that's 100 miles there and 100 back - and a 6hour meeting in between. Kris, you are so right though! David, I think we fall between two stools with this understanding business - we understand, they don't. let them walk in your shoes, they'd understand in a nano second!! I slept twelve hours last night and the night before - I'm like a walking talking zombie at the moment. Roll on the weekend so i can sleep.

Thank good ness for the songs - keep em coming, girl!!

Hope everyone is well

Macca

Teechur,

I'm just back off holiday and have just read this thread. In a way I'm glad you are angry 'cos that shows that you have the fight in you to combat this thing!! you are right about doctors though. It's about them being honest in admitting their limitations - not many of them do - that's arrogance in my opinion.

As for exercise, do what you can - you've just had to lower the bar for a while - maybe it can go back up soon, maybe start with yoga - yes yoga not Yogi - or pilates or something.

On the tandem - get on the back and when you get off tell your partner you did all the peddling!! You'll convince him you did!!

Seriously, keep ranting and raving - the fight's still there and we love to see it!!

best wishes

Macca

HI Stephanie, welcome to BTG!

I've only just read this thread. The words that jumped off the page at me from your post were 'I don't care'. I think you do care and care very much. What you are doing is telling people the truth. That you are different, same car body with a different engine, but just because they can't see it doesn't mean it isn't true! Engine performance is different. just tell them that you are different and if they can't accept that, then that's their problem not yours. Get your daughter and the others in your family to read these posts - we've all been there, we understand the problem entirely - we've lived it and are living it too!

And as for that 'professional' - well, what arrogance!! Medical opinions are just that - opinions. For everyone you get with that opinion, you can find another with the opposite. They are more worrying because of what they don't know rather than what they do know!! No matter what his qualifications are, the day he stops being willing to listen and learn is the day he becomes a bad one and you are better off with a different one! Just watch an old Perry Mason or Quincy or CSI etc etc. Opposite opinions in legal cases are ten a penny because they are based on that 'experts' knowledge and training, but if his training is slightly different from the other guy, then it's always going to be different. That's because there are no definite's. Even two people prescribed the same drugs for the same symptoms can have a different result because we all have a different chemical make up, eat and drink different things and the chemicals/drugs they give us can react differently. Just read any side effects leaflet that comes with the drugs you are prescribed - none of it is an exact science, that's why they write them that way, because the effects can be so different!

Anyway, enough of a rant, go and focus on getting your husband better, he sounds a great guy, and anytime you want to let off steam, we're here

Once again welcome to this fantastic forum

Best wishes

Macca

David,

here's a link I found - it might be worth a look - it's to the University of Michigan!! They do loads of different clinical studies and there may well be something there that can assist you. No guarantees, but I hope it helps to start the search for a solution for you.

https://www.umms.med.umich.edu/umclinicalstudies/disp_pub_condition.do

You might need to type it in - for some reason I can't get it to turn blue - if it doesn't work just go to the Uni of Michigan - their site is easy to follow

Best wishes

Macca

David

you are a lot more positive now and I'm so glad that you are. Perhaps I should stamp on your other foot to take your mind off the one usually giving you grief, only joking ha ha.

Or Winb can sing to you, that might be painful also, or I could sing to you and then that really would hurt!!

Look in the mirror every day and tell yourself "I am worth it"...........................Because you are!!!

I'm off on holiday in the morning - see you when I get back, stay well and upbeat!

Get the help you need for the pain and don't take no for an answer!! Wishing you well as always!

Macca

NB: Just as an after thought David, do you need to get some advice from someone other than your normal doctor - you don't seem to be advancing under his/her care? Are there any nearby teaching hospitals or Universities where research in this field is carried out. How about Chicago, that's Michigan isn't it? A big citylike that must have a University. Even if they don't know, they'll probably know someone who does. Cast the net a little further David, there has to be an answer to your pain problem - we've just got to find it!

Dawn,

I think the best advice is to claim all of those benefits you talk about. Don't take advice from friends because even with the best intentions they're usually wrong in one way or another. Claim the benefits, and let the organisation responsible for it tell you their decisions. Then, you have something in writing, know the reasons why and you can appeal if you disagree with the decisions. Check their calculations, because they're not infallible either. At worst, they'll turn you down and it'll make you grumpy - at best it'll get you some money and you will understand the benefits direct from the horses mouth.

Good luck

Macca

Well, that's it - I just finished a full week back at work and now I'm off for a week and a half. I did reduced hours admittedly, but hey I got through it - sort of. Definitely did too much yesterday, but I couldn't let it go. I wanted to gget it done and leave on holiday with a clear conscience. Wanted to finish at 2 but got out at 5.45. Suffering for it now but don't go back to work until 14th June.

Mary, just caught up with your posts - I hope the treatment is working for you.

Hope every one is ok and thanks for the good wishes. I will enjoy my break I'm sure

Macca

Pauline,

fatigue is my curse also - 20 months in and it's still my biggest problem. Don't try to do too much at one time - your body won't let you any way so listen to it. That is you telling yourself you're not ready to tackle that task yet! it's very hard, but let others d oit for you, I bet you've done loads for them over the years. Don't run before you can walk. It's a long walk but as someone said on here - even the longest journey starts with a single step - you'll get there in the end. If you look very closely, I'm just a bit further up that same road as you - keep going girl - you'll make it

Macca

Emma

Good to have you with us - I am back at work now, just done my fourth day, one more to go to the weekend then I'm off on holliday and I feel like I need it. It's hard, some days are harder than others, but they're all hard!! Just keep putting one foot in front of the other, take regular breaks away from your desk and break the day down into small chunks.

Any time you want to rant just come on here and let fly - that's good in itself. Just because you look 'normal' others think you are 'normal' but they don't see the internal turmoil. Just like the duck on the water serenely cruising along whilst under the surface the feet are going like the clappers, but you can't see em!

Good luck and keep posting

best wishes

Macca

Sandi - nice touch for your kids, that's beautiful, I like that! Awwwwwwww------

Macca