Author Topic: ILLNESS AND ESA  (Read 5520 times)

Offline Grace53

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« on: Apr 01 2011, 09:36 AM »
I'm one of the ESA Customers now.  I have Meniere's, IBS; Severe Social Anxiety Disorder; Asthma and Severe Skin Allergies/Angeoedema/Anaphylactic Shock.

I've been inexplicably falling over for the past 20 years and my GPs have just ignored that because the falls were relatively spaced out in their timing.  I also had the mother of all ear infections about 20 years ago which culminated in an abscess which burst and to be honest I've never been the same since.  On top of that I have a really severe social anxiety disorder due to an assault which took place over 20 years ago which basically prevents me from going anywhere but the local supermarket and it's taken me YEARS to be able to do that!  Can't do crowds and anything more than 3 people is a crowd to me.  Can't do confined spaces so it's the park if I want to 'go out'.  Trains, buses, stations, airports - aaaaargh!

Two years ago I had my first Meniere's spin.  My description of the initial stages of an attack which can last several weeks or months - is that of being sea sick on a boat - that feeling of the landscape rolling a bit and that nausea which you can't get relief from.  The spin stage I liken to The Poseidon Adventure - that scary feeling of the world turning around and one minute you have your feet on the ceiling and the next they're on the floor.

After the Spin I recovered for a while and then I began to itch like a lousy dog.  Eventually my whole body was just a mass of huge hives which joined together, my throat, eyes and lips swelled up and I was off on a 999 trip to hospital with Anaphylactic Shock.  It took me 3 months to get my GP to agree to refer me to an Immunologist EVEN THOUGH THE HOSPITAL I WAS TAKEN TO AND STAYED IN FOR ONE WEEK TOLD THEM I NEEDED TO BE SEEN URGENTLY BY AN IMMUNOLOGIST.  When I eventually was referred the Immunologist was very blase, disinterested in how this was affecting my life and how scared I was and he offered no help whatsoever.  The diagnosis was Chronic Ideopathic Urticaria which means chronic hives of unknown cause.  The cause is unknown because they don't do extensive allergy tests which might involve chemical allergies or food allergies - they do cats, dogs, wheat, silver birch, grass etc but they totally ignore food additives and other chemicals.  So if you're not allergic to cats, dogs etc - you're FINE according to the NHS.

I discovered from research online that Meniere's is possibly allergy related also and this all points to the Immune System being compromised so really it's an Immunologist's job to put all these related illnesses together.  Meniere's is only a SYMPTOM not a disease in itself.  It's PART of an Immune Condition which does not yet seem to have been identified and given a name.  So I'm interested in people with Meniere's who have other conditions which they feel are not related but which might in fact be related to an Immune System dysfunction.

I had to attend a Medical Assessment and I cried all the way through it because that's what happens to me when I have to meet new people or go to places I don't know.  My chest tightens, I can't breathe and I burst into tears and can't stop.  It's physical, it's debilitating and highly embarrassing.  I found the Medical Assessment threatening and humiliating and stressful to the point where I simply said ANYTHING just to get it over with and get out of the room.  I was considered to be well and my ESA was refused.  I had no money to pay my rent or bills and I had to cash in my pension and live off that until someone told me to appeal against the decision.  That's fine but I HAD NO ENERGY TO APPEAL AGAINST IT.  I was exhausted, I live alone and I had no-one to help me.  The stress of all that made me even more ill and I ended up HOMELESS and attending a Tribunal where I had to tell people how my illness affected my life.  I COULDN'T EVEN BEGIN TO TELL THEM.  And I doubt any of the people sitting at the desk opposite me COULD EVEN COMPREHEND WHERE ILLNESS HAD TAKEN ME or where it's taking others.

I think these Medical Assessments are unnecessarily cruel and intimidating.  I know there are malingerers and people who play the system but I'm not one of them but BECAUSE of THEM I'm being scrutinised and treated like one.  So the genuinely sick and disabled are being denied help and having to pay the price because of people are ABLE TO PLAY THE SYSTEM but who are perfectly well and often have jobs on the side and their benefit money is just their pocket money to them.  My benefit money is WHAT I LIVE ON.  So now I have to go through yet another gruelling experience where I feel I'm being asked to literally BEG for help from people who are EARNING A FEE for questioning me. 

It's 2011 and we've got a 'wonderful NHS' which BECAUSE OF LONG WAITS FOR APPOINTMENTS AND INACCURATE AND INADEQUATE TESTING - DOESN'T DETECT ILLNESS OR DIAGNOSE ACCURATELY UNTIL IT'S TOO LATE.  We have a BENEFITS SYSTEM which rewards those who are ABLE TO PLAY THE SYSTEM while it PENALISES THE REALLY SICK PEOPLE.  We have elderly people dying in hospitals because they aren't being fed.  So that gets rid of one sector of society which costs too much to keep.  So perhaps now the Benefits System is getting rid of the other sector of society, the sick and the vulnerable.  Maybe if they starve us all to death and force us into debt by cutting benefits, we'll all huddle in a corner and quietly die or run to the nearest cliff and jump off.  That'll solve yet another of society's ills won't it?

I've struggled with illness and fear for the past 20 years.  And fear is real, it is sometimes justified and sometimes it's irrational but nevertheless it is DEVASTATING IN IT'S EFFECTS ON A PERSON'S LIFE.  If I could switch off my fear, I would.  But I can't.  But DWP expect me to put a spring in my step and get out there on that 'Journey Back to Work'.  How bloody convenient for THEM!  To treat me like a non-person when it suits THEIR needs.  When the politicians have to show they're doing something, blaming someone, sorting someone out so they can cover their own blunders, mismanagement of funds and downright THEIVING.  So yes - pick on the elderly, the sick, the vulnerable and let's not forget the immigrants.  I mean all of those people combined are the REAL problem aren't they? 

Think about it.  How DIFFERENT is that to the Naziism of Hitler and his pals?  It's no different - it's just a much quieter, much more subtle way of 'controlling the masses' and getting rid of people without getting their hands dirty.

Thanks for the rant. :-X


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« Reply #1 on: Apr 01 2011, 11:57 AM »
Hi there,

Thanks for your post and welcome to the forum.  Sorry to hear all what you have been through and currently going through and Menieres is the last thing you need now right now!

There has been some interest with regards to Menieres and allergy.  In fact recently i have been very tempted to go out and buy all the best known products to power my immune system!  High doses of vit C, Vit E, Vit B Complex, Vit A, Calcium, Magnesium, Zinc, High potency Garlic tablets, Cats Claw, amino acid acid Lysine, Ginkgo biloba, Coenzyme Q 10 and a few others, would be very good i think!!!  Downside would be the cost of all this though?  I have been tempted to go ahead and try this combination for years AND to remove dairy and wheat products out of my diet as well as these also allergy foods and of course in some people cannot be tolerated.  These are definite migraine triggers for me but its so hard to eliminate these foods as they seem to be in just about every thing that we buy these days?  Sugar may also play a part here in allergy and migraines along with alcohol of course..

Please stay in touch and i hope you find the forum of use...

Simon :)

Offline Paula

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« Reply #2 on: Apr 01 2011, 06:28 PM »
Hi Grace53 (Grace my favourite name in the whole word)

Welcome from me too.  You have been through it haven't you and I am so sorry to read how you have suffered.

I was very interested in the allergy and MD thing but until much more research is done and people take this illness seriously then we can only guess, but what I do know from mine is that anxiety and stress makes it much much worse so these days I tend to take just one day at a time and see what happens.

I agree the benefits system is a sham, I should know because I work in it and I could tell you stories to make your hair curl but until someone gets some balls and makes the changes required to help people that REALLY need it rather than pander to human rights and all that bo**ocks then we are stuck with it so people need to stand their ground and keeping appealing but that in itself is enough stress to set you back years so I don't envy anybody that has to go through that.

There are lots of friendly and very informative people on this site so rant away because there is always someone ready to listen and try and give good, sound advice.

Take care

Paula xx

Offline Elaine

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« Reply #3 on: Apr 01 2011, 11:00 PM »
Welcome to the forum Grace .I hope you find it helpful.
I thought the banner held by one person protesting said it all " If you want my benefits Mr Cameron you can have my disability too "  ;) Without getting too political and on my soap box ,I think the system and the lazy culture developing in this country as a result of it mean that those of us who need it have to fight to get it (and sometimes don't get it ) and many that should just get off their backsides and work get money they shouldn't .
Elaine xx

Offline Christina

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« Reply #4 on: Apr 02 2011, 08:04 AM »
It's true that most people who need to claim benefits in this country, for whatever reason, seem to be given the scrounger mentality and the way the system is heading it's only getting harder for those of us who have disabilities to claim. I am sure there are those who play the system, but in my humble opinion they are in the minority but the feeling in the country about that minority then gets transferred to the rest of us. I don't see it improving as more and more jobs get cut. More people will need to claim not less. Let's face it the shake up is designed to save money and move people with long term medical conditions back into work. I'll be interested to see how that goes with unemployment rising. Chris x
not waiting for the storm to pass, but learning to dance in the rain ...

Offline jon

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« Reply #5 on: Apr 02 2011, 03:48 PM »
Too true Chris... There are divide and rule tactics being played out.
Scroungers are the minority, and there are very good systems in place to find them out. I for one will keep my nose out of anyone else claim, that's between them and the DWP and it ought to include the persons own medical specialists, a step which seems to be sidetracked by the new systems in place.

We are being shafted, now it's the benefit system, next the private medical insurance companies will be targeting the NHS, if they aren't already. Then no-one with a long-term illness will be able to get sickness cover, or treatment, and they'll get no benefits either...
Tinnitus and deafness left ear 1981 onwards.
Diagnosed with meniere's in 1993.
Retired from work 1995.
HNPP - Hereditary Neuropathy with Pressure Palsy

Offline millington

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« Reply #6 on: Feb 22 2012, 04:22 PM »
wow wow wow, this needs to be sent to mr cameron asap.