Macca

Hi Jan,

Yes it is worth appealing, although the process is long and slow.  You must get it in within 28 days of the decision being made, not 28 days from when you receive it. So get your letter in now, even before your appointments with CAB - if the date passes and you have not appealed they will just throw it out.

The rules have changed and the first stage is for DWP to review their own decision.  Also, it is worth checking that DWP have applied the law correctly so it is worth knowing which laws they have applied.  It is not just about the points system, it is about the law too.  Also make a note of any underhand tactics used to elicit answers from you that they could use to low score you ie did they ask you to move to a more comfortable chair - that would be to see if you could move unaided, not to make you more comfortable, for instance.

Did they ask you any questions about your illness, if not that in itself is grounds for appeal as they cannot have assessed you properly.

Look at the questions closely ie can you lift a box?  What kind of box, lift it up from where ie a floor or a table, how big is it, what is in it, how heavy etc?

Also worth noting who assessed you, was it  a doctor, nurse or 'qualified practitioner' - do they have qualifications to assess mental health for example, in other words were they qualified to assess you properly and fairly?

If you appeal, make sure you turn up - sometimes DWP don't turn up and the tribunals often come down in your favour.

Take Super Mario's advice above, it's good.  It can be a long drawn out process and there are no guarantees but if you don't try, you won't get.

Above all, get that appeal letter in quickly with the phrase "I wish to appeal against your decision of --/--/----"  When  their review letter arrives, (if it is not in your favour) write back straight away telling them you wish to carry on with your appeal.  Send your letters by recorded delivery as someone in DWP has to sign for them (slightly more expensive but they cannot say they have not received them).

Keep copies of everything including telephone calls including what was said, dates, times, and who you spoke to.  This can be important as phone calls are recorded and they can recover the transcripts.

Latest figures show DWP was losing up to 60% of appeals so the odds are favourable. 

Good luck,

Macca

Hi,

I think this is to do with facial muscle nerve endings that can be painful.  However, I don't know if it is a side effect of a SAH.  You'd be much better talking to your doctor than any of us.

We're not doctors and can't give any medical advice anyway.  They are the people that know so ask them.  Only they can give you the treatment to solve it anyway, but I've never heard of anyone on this site that has suffered with this before.

Maybe someone will prove me wrong though!

Good luck,

Macca

Thanks Jan - it sounds great!

When you put things in context and flip the coin to look at the other side, it all seems to fit into place!

It was my pleasure - glad I could help.

Macca

Jan -This is you!

Lost 5% - there's another 95% to play with.

Confidence - you just need some temporary reassurance - you're doing just great!

Independence - it's still there, you just have someone to help now and again until you do it yourself again

Stamina - catch the bus - it's just a different route to the results you want.

Motivation - the doctors and nurses who helped you and your family who stood by you and cared for you.

Identity - you've just added some new facets, familiarise yourself with them and you'll see the old you is still in there too!

You are ok - you're just wearing a different coat that some don't recognise, but that's their problem not yours.

You were a child once -your childhood has gone but you don't mourn for it, you remember with fondness and a smile. Do the same now.

You've progressed in life and taken some new steps, that's all.

The 'old' you is in a photograph album.  Bring it out and laugh and recreate some of the situations you pictured.

The new you is here and now. 

Don't beat yourself up about it - enjoy it.

Life is for living, change happens, it's how you deal with it that counts!

Love yourself and everyone else will love you for it.

Best wishes

Macca

Hi Rachel,

I'm 5 years out and I still get headaches now and again.  They usually come either when I am tired or when the weather is like it is today, low pressure and humid.

I just accept it and work around it as best I can, stay hydrated as Super Mario says and avoid mental pressure where you can ie stress.  Fatigue is a daily battle for me as my pituitary gland was damaged when they coiled me but this was a small price to pay for the reward of the rest of my life to look forward to.

Things generally get better over time, albeit a long time - patience is a virtue, they say and it certainly has been for me.

Stay positive, and if it is a real bind, go back to the hospital (not your GP) where you were treated and tell them about your problem. It's what they're there for. Don't be shy, just get in there and ask!  You have nothing to lose and everything to gain!

Macca

Good luck Gail!  Hope the coiling goes well.

Macca

Hi Gail,

First of all, welcome to BTG.  Lots of it all sounds so familiar to me including the civil service bit - and if one thing is good about the civil service it is that when you are very ill, generally, they treat you very well.  I(I've since retired).

Look at it this way now, in the words of the Yazz song "The only way is up!"

The worst bit is over and progress is the key now, at whatever pace your body will allow.  Everyone is different and you will find your own level.  There doesn't seem to be a 'normal' pace, except it will be slower than your pre-illness pace!

There is no right or wrong way, but sometimes a different way.  Embrace that knowledge, don't beat yourself up about anything mentally, and things will be a lot easier to deal with.

You'll be all the stronger for it, including when some people make the odd insensitive comment, as they surely will.  They usually do it in blissful ignorance of the effects of your condition than out of any malice aforethought.  it is also because when you go back to work there is nothing for them to see, such as a plaster-cast or a limp.

Stay positive, recover at your own pace and live your life the best way you can.  Your family will gain strength from that, as will you.

Good luck, I wish you well.

Macca

Well done Jan!

When you fall off your bike, you get back on again.  So go and enjoy life and be respectful of the chance you've been given!  Great that you have reached this milestone, keep pedalling and reach many more!

Macca

Congratulations Michelle,

Well done, it's a slow journey but it's well worth it.  Carry on enjoying life to the full and make the most of what you have got.  Even if Verdun forgot, it shows you care and that there's fight in you so there's a lesson to be learned just from that alone!

Happy anni!!!

Macca

Carolyn,

Every time you look in the mirror, smile at the miracle.  Make your own luck, make it happen and enjoy what you have and who you are.

I don't know who said it (it wasn't me) but he said "The more I practice, the luckier I get."

Practice life Carolyn!

Good on yer matey!!!

Macca

Hey Carolyn,

Congratulations, great for us to have you on this site, you are more than welcome!  Well done for getting this far!

Win's a star isn't she?

Thanks for being with us, your positive attitude serves you and others well and its great to see you always so positive despite the down times.

You are an asset to this site, and what's a stretch of water between friends?

Macca

Well done to Mr and Mrs Subs - hope you had a great day!

Macca

Hi Jan,

Welcome to BTG.  You've already realised you are different to how you were before.  That is a major recognition and you are therefore over a big hurdle.

It's always best to look forwards.  Looking backwards is only useful to provide you with a yardstick on progress, not to look back on with yearning that brings heartache about what you think you've lost.

In most cases, you haven't lost anything, it's just in a different place and the challenge is to find it again by a different access point/route.

Good luck, I wish you the very best in meeting your challenges.  Sometimes it can be a slow road, but the scenery can be fantastic and forwards is the best way to view it.

In the words of the Oasis song - "Don't look back in anger."  Just be thankful you achieved in the first place and set about finding new paths, new goals, new achievements and set about plotting your course to fulfilment.  Life ain't a rehearsal, make the most of it as the guys at the Invictus games in the US are doing!

Macca

Hi,

I was in a coma for a week, although it was not induced.  As I was coming out of it I was talking complete nonsense for a day or two and then I started to come round.  I was oblivious of people around me and was reliant on them not taking offence at me saying some outrageous things.  They realised it 'wasn't really me' talking.  nevertheless, I needed much support over the coming months and needed people to come and talk to me, to show me pictures and photographs, to remind me of names and places and things I once knew.

It induced in me for a short while at least, a sense of panic, because I knew there was something wrong but I couldn't articulate it to anyone.  I had forgotten how.  I know that may sound ridiculous, but at the time it felt very real.  I eventually started to pick up on little things and I counted every little thing recovered as a success and progress on how I had been the day before.  But it also meant I knew I was getting better, albeit very slowly and that I was going to have to go one hour, one day, one week at a time.

Eventually I was able to start writing a diary and I realised over time what good progress I had made.  I still find it hard to look at that diary because it brings all the emotions back, particularly bad ones and that upsets me.  However it is also a reminder that although it was a bad time, I did come through it with patience, determination and the support of those around me. And yes, also with a slice of luck I think. Each of us on this recovery journey goes on it at our own pace.  It isn't a race, it is a journey of discovery, about ourselves, our loved ones and our resilience to overcome adversity.

So take your time, map that recovery journey, for each one is different, our blessings arrive at different times, be they big or small, and be thankful for each one.  Treat each as a bonus, not an expectancy, for if you do the latter you will encounter disappointment and will overlook the smaller successes that deserve much merit.

Savour the time you spend together on this recovery journey, as you might not recognise it now, but this can be quality time you both experience and it will bind you together like no other happening can.

Keep on doing what you have already done - keep talking to him, keep holding his hand, involve him in your daily life, make him feel that he still belongs, no matter what.  Progress may be small to start with but hopefully its pace may increase.

I wish you both luck.

Macca

Hi Jade,

Welcome to BTG.

1st he's in the right place, as Louise says.

2nd Don't let your imagination run away with you - when you are on your own it's easy to let this happen - find someone to talk to and deal with reality - not what might happen, but what actually is happening.

3rd We're not doctors on here and can't give medical advice but I understand and was told when I was cold in hospital vasospasms produce symptoms similar to Reynaud's Disease in tingling fingers and toes and cold at the extremities but they are treating him for it aren't they? Ask the doctors why they are keeping up the blood pressure, and what effect is it having? I don't know for sure, and I may well be wrong but talk to the doctors. They are the ones with the know-how.

You'll drive yourself to distraction if you keep whipping yourself up into a frenzy with no-one there to keep you in check!

Good luck - the sooner you make the enquiries the sooner you'll put your mind at rest!

Macca

Well done Claudette - now get on with your life and enjoy all that it brings.  I wish you the very best of luck and good fortune!

Macca

Hi,

I would say go and get a second opinion from someone with knowledge in that field of medicine.  Then get a third if necessary.  It is an important decision, not just for you but for your little one and other members of your family too.

Good luck

Macca

Hi Susan,

You're just different now, that's all.  Focus on what you can do, not what you can't.  Write things down if you need to, carry a notebook to help your memory.

I do all the stuff you do - I've left burners on, you don't need to have had a SAH to do that either!  I forget where I park my car.  I get introduced to someone and within seconds I forget their name!  It's just par for the course.

As Carolyn says, don't beat yourself up about it.  Learn to love yourself again - when you've done that others will love you too!  Make it part of who you are.  Forgetting things can be one of your endearing eccentricities - that's what we Brits are known for!

Hey, I put on weight - there's just more of me to love!  I'm not conceited, it's just me accepting who I am and hoping others do too!

I've been through a lot, and so have you, so why should I care that others don't necessarily see me the same way as they used to? I'm still alive and kicking.  It's my life and I'm going to enjoy what's left of it.  If others don't like it then that's their problem not mine! That's how you should deal with this in my opinion.  I sound like an American there don't I? Lol

Best wishes and good luck in all that you do young lady!

Macca

Hi Claudette,

The good news is that they can do something about it - so look on the bright side, your glass is half full, not half empty!  Yes it is perhaps a little worrying but what is that price against the rest of your life.  Like paying 5 pence for a season ticket to Wembley!

Listen to your doctors and try to be positive!  There is every reason to be so.  Then do what you think is right once you have taken everything into account.  Only you can take that decision.  Good luck!

Macca

Well done Daff,

Great milestone to reach - sorry I missed the day as I have been away - hope you had a great time!  Here's to many more years and to continuing progress!

Macca

Hi Peter and Irene,

Welcome to BTG!  As you can see there are people who've been there before you and who can give you plenty of support!  Thunderclap headaches are no fun at all!

There are travel insurance firms who will insure you, as long as you are honest with them.  Yes, it may be a bit more expensive, especially if going outside Europe, particularly the States, but it is still cheaper than having to foot the cost yourself if you do need transport home - that's the way I look at it, a bit like getting a taxi instead of drink driving - expensive, but not as expensive as getting caught!.

I travelled to Kazakhstan last year and their scheme is like the states - if you can't pay,  there's no help to speak of!

Anyway, welcome to this site, can we expect to see you on the Great British Bake-off next time round?

Macca

Hi Claudette,

If they work for you then fine, but I would suggest talking it over with your doctors and be careful that none of the things you take interfere with any physician prescribed medications.

Best wishes,

Macca

Onwards and Upwards Clare,

Well done and good luck in your new job!

Great stuff from your husband too, who has been at your side throughout your ordeal - and no doubt experienced one of his own too!!!

Macca

What an example and inspiration you are to us all Super Mario!!!

Long may it continue!

Macca

Great story Kerry and welcome to BTG.  Everybody's story is slightly different but similar in many respects!  You are indeed very lucky to make such a good recovery so soon after the event.  Many others are not.

You are right to pick up on the effect on your nearest and dearest. They are sometimes overlooked but the impact on them can be very profound and long lasting.  Thank you for highlighting them and their importance and value in your recovery.

Good luck for the future and please keep posting   to let us know how you are getting on!

Macca