[Ccddfergt]

My Girlfriend and I went for an ESA appeal yesterday before a Judge and a Doctor,
Despite being what I would describe as "severely ill", they have thrown out her appeal and thus stopped all our benefits, including our housing benefit.

So not only do we now not have anything to live on, we are also in serious danger of losing our Flat too.
We both attended an ATOS medical, where the "day to day" aspects of her life were ripped apart by the Nurse who wasn't even fully trained to diagnose her full list of illnesses/ailments.

The ATOS medical requires that you score 15 points or more to ensure that they don't stop your benefits,
yet when we did a self-assessment with an independent benefits advisor, my girlfriend scored over 80 points.
So I can't see how they failed her and deemed her fit to work at the appeal hearing.

Even though I myself have CFS/ME and Fibromyalgia, and I've begged her to let me return to work, as I could probably get a security job within a few weeks (even though I feel like utter sh!t most of the time with the fatigue etc), She has stated that if I do return to work they will then expect we to go back to work Full time and that would be impossible at the moment, Not only because of my ongoing health problems, but because she is so ill that I am literally her carer at present as she suffers from Seizures too and they cause her to lose all sense of reality for several minutes at a time, The chances are very high for me coming home from any job and finding her having had a seizure whilst showering or making a coffee etc means that I could come home and find her laying on the bathroom floor half-dead or having scalded herself with the kettle etc.

So for the foreseeable future, me returning to work is a very last resort, until such time that the Seizures are fully investigated and a suitable medication
Prescribed that controls them or she has a carer who comes in and either looks after her or checks up on her whilst I was working.

The Illnesses/Ailments she currently has are: CFS/ME,Fibromyalgia, Cluster headaches(can last anywhere from 1-24 hours), Pelvic congestion syndrome,
Tietze syndrome, Severe IBS, Very,Poor circulation, Severe depression and some other problems I'm not going to go into (too personal).

I keep telling her that if she was a Horse, they would have shot her by now.

Anyway, She has this list of things wrong with her and yet they deemed her fit for work, I seriously don't remember a day in the last 1.5 years that we've been together that she hasn't had something that has been painful in someway or hasn't impeded on her "day to day" life in some way or another.

Her IBS is so severe that originally her Doctor thought it was Crohn's disease, as when (on the odd occasion) she actually has a normal bowel movement, she bleeds profusely, and as you can imagine this is very stressful for her and myself (I'm worried sick for her), And the loss of blood makes her weak, (well, weaker than normal).

So how the hell she is expected to hold down a full time or even part time job, whilst juggling her frequent visits to the Doctors (1-3 times a week),
Her Neurologist appointments (about the seizures), as well as frequent rest breaks, toilet visits etc, is anyone's guess, because no sane employer would dare to take her on at present.
(Although she would love to return to work, if only to regain her self-respect).

So today we've spent most of it phoning around and trying to find out information on what we do now, where we go from here.

We're going to try for a Crisis loan as what we've been living on over the last year is just about enough to live on, let alone save anything for a rainy day.

My fathers helping as much as he can and the TV and probably the g/f's laptop is going tomorrow to help pay the rent (the laptop was my old one and a present to her), and anything else
that will get us any money, she's adamant that my water cooled PC will be the very last thing to go, as she understands what it means to me, I'd rather sell a kidney than part with it tbh.

My car is the second to last thing on the list to go, as we've discussed it already and without a car we'd be f*cked for getting around as a return ticket for both of us to the doctors is the same cost
as what I put into the car each week in diesel.

Besides she's already said that worst come to worst, she'd rather keep the car and sleep in a tent, as long as she still has me in her life, that's all that matters to her.

If your all wondering why I'm with this woman as she doesn't have the best quality of life at the moment, its because she helped drag me back from the brink of severe depression back in April 2011 and I literally owe my life to her, at that time I was under severe stress in my job, my family and friends were totally unsympathetic about my illness, And I'd contemplated suicide on more than one occasion.

My last resort (before I took my life) was at that time, the internet, and I sought out an online forum for CFS/ME sufferers as I felt that my illness was beating me and that I didn't feel life
was worth living anymore, as I felt so alone and felt that I had an impossible climb ahead of me in trying to get some quality of life.

On that forum, I posted something, and my Fiancee, was one of the first people who replied, She told me that she knew where I was coming from, but that she was a fighter and a survivor and
she urged me to keep on fighting and facing each day, even though she knew from her own symptoms that I was in much pain, and also that her own family and friends, had virtually dismissed the illness
as being "all in the head", so she knew what it felt to be all alone and fighting for her illness to be recognized and taken seriously.

I guess she was the shining light that I needed in the sea of darkness that I was in.

Through a combination of texting, phone calls and then through sharing our facebook profiles, we built up a friendship, and upon deciding to meet one day, back in July of 2011, Love blossomed and
we haven't spent more than a day apart since then, She is my "rock" and I am hers, that is why we are in this until the end and will keep on fighting to get the Justice that we both deserve.

And I think I we do deserve some, as I've spent nigh on 28 years paying taxes into this goddamn country and now I want something back.

[Dfvgthyju]

I wish all the best for you and your missus.

But damn this place is full of people who are sick...

[Elelaytet]

I keep telling her that if she was a Horse, they would have shot her by now.

Probably not the best thing to tell her.

[Ccddfergt]

I wish all the best for you and your missus.

But damn this place is full of people who are sick...

Guess this place is as good as any to come and die.

Thanks for your best wishes though.

--- Post Update ---

Probably not the best thing to tell her.

We're lucky its our sense of humor that's keeping us going.

[Annevecenqp]

Illnesses like these are unfortunately not recognised as something that is enough to receive financial support.

Personally, I suffered badly with crohns disease for almost 3 years. I didn't want to pack in my job because I knew i'd get nothing. So I went to work every day, which was a nightmare. I won't go into any detail, but i'll just say it's lucky there's a gents toilet opposite my office.

Assessment for whether you deserve benefits might include questions like "Can you dress yourself?" etc... which, if you're honest, means you answer the questions like a fit and healthy person. You'd hope a doctor could assess you not fit for work, and if you'd worked previous you'd then be allegible for support.

You really have to ask yourself if you're able to work or not though, and be honest.

[Ccddfergt]

You really have to ask yourself if you're able to work or not though, and be honest.

She is being honest and I am too.

The pain she is under each day is enough that she spends a lot of each day crying with it as the med's don't really take the edge off the pain, and the med's she take at night, turn her into a zombie, it makes only for interesting conversations in bed, with no recollection to what she has said in the morning.

The CFS/ME for me has largely been replaced by the pain of the Fibromyalgia, I liken it to my fingers and toes being pummeled by a hammer until the pain causes me to wince if I have to walk, driving is painful but not impossible as I tend to use heels on the pedals rather than toes and on my really bad days, we don't go out and rearrange appointments (if possible).

The feeling in my toes and fingers is like the bones are literally vibrating at high speed, almost like their "humming" to a tune I cannot hear, its something that painkillers just about suppress.

I couldn't stand or sit for very long like this as sitting for too long causes me to lose all feeling in my legs and because of the CFS/ME my sense of balance is shite and I find myself veering off to the left a lot, or losing balance altogether.

Its Horrible to be afflicted by this illness as in my teenage and early adult years I was a keen outdoorsman and spent hours hiking in the welsh mountains or hunting rabbits in the local forests and walking 10-20 miles in a day.

I can only dream that one day I feel well enough to be able to walk more than a few hundred metres without any pain.

On the other side of the coin, I can understand the Government wanting to get the real scroungers off of benefits and back into work, the alcoholics and druggies are rife in Blackpool and in all parts of the UK, and they get money thrown at them from the DWP and claim DLA too.

The Fat b@stards in their mobility scooters p!ss me off too, Its "my glands" they state as the reason why their so obese, yet I''ve never seen a fat person in a concentration camp, so that's just a poor excuse to not get off their fat @rses and get into employment.

And don't even get me started on people like Anjem Choudary who takes home £25K in benefits (£8K more than a serving squaddie) and lives in a £240K house.

Country needs to start looking after the ones who actually want to work, but can't and the ones who have actually already spent half their lives paying taxes.

[Ccddfergt]

Well maybe my original post was a little bit too eager.

We were both so sure that she would fail the appeal for the assessment, but we've had some good luck for a change and we received the letter from the Judge and Doctor this morning and they have awarded her sufficient points that means that we won't get our money stopped, won't lose our flat and she won't be reassessed now for her mental and physical well-being for a period of 6 months, which should hopefully give us sufficient time to achieve some sort of turn around in our health and mental fitness and enable us to hopefully get back into some sort of work.

We needed a bit of good luck and it looks like we have had some, may it continue.

[Haremporblape]

Glad you've got a break - I've heard some very very bad things about those assessments and the company running them.

Having said that, I'm still shocked by the actions of the doctors here in NL. When I went to them with my bad back they were not interested in referring me for an MRI, but had no problem in immediately putting me on oxycontin (vicodin) for more than 6 months - whilst making no attempt to try and find out what exactly was causing the pain. Finally after two years they agreed to refer me for an MRI which, surprise surprise, showed two blown discs.

[gernica]

I don't know much about it, but I do have a couple of friends with these sort of problems in their past and their other symptoms became entirely manageable once the depression was treated. Food for thought?

[Ccddfergt]

I don't know much about it, but I do have a couple of friends with these sort of problems in their past and their other symptoms became entirely manageable once the depression was treated. Food for thought?

The depression isn't directly caused by the illness, its more caused by fighting for the illness to be both recognised by doctors and the DWP and everyone else, including family and friends that deem it to be "all in the head", as well as that its a constant daily struggle to make people that we interact with on a daily basis that the illness isn't made up and that even though its "the invisible illness", insofar that it can't be seen from an outside perspective from a viewer, what the illness is doing to the inside of a persons body is an entirely different thing.

My g/f still has to go back to court soon to try and enforce access to her children that was awarded to her in the previous court case she attended last year, so the stress of that is not making the depression any better.

Also with her now having severe IBS and requiring a special diet and us both living on the most basic rate ESA and not having any other income, trying to maintain that special diet is near impossible, which causes more stress and thus more depression.

I cannot see the stress and thus the depression decreasing, until such time as we both feel well enough to return to work without being in constant daily pain and being fatigued to a point that means we could work any more than a few hours a day in some job that we could definitely do without being doped up on painkillers, we both take enough tablets each day that I'm surprised we don't rattle when we walk.

I've also got severe insomnia, as my brain does not seem to shutdown at night and this is under investigation, so by the time I do eventually get to sleep each night, its about 5am and then I wake up at 9am, so trying to work with unrefreshing sleep would be nigh impossible too, I'd just be a danger to myself.

[gernica]

My IBS only flairs up when I am stressed so again, that's something that might become more manageable with treatment of the problem, rather than the symptoms. My friends situation was almost identical to yours and they now swear that it was mainly psychological.

[Ccddfergt]

My IBS only flairs up when I am stressed so again, that's something that might become more manageable with treatment of the problem, rather than the symptoms. My friends situation was almost identical to yours and they now swear that it was mainly psychological.

I'll agree that stress makes it worse, but its not an entirely psychological problem and can be treated as such.

If the physical problems can be treated then the psychological problems would take care of themselves (i guess).

The only time I have ever felt some degree of well being in the past was indulging in a very strict diet and a very strict exercise regime, all whilst still working a night job that enabled me to rest for 6 hours in every 12 hour shift.
(And by rest I mean dozing off or sleeping, I wasn't alone so this was possible).

Once I had a crash and a relapse, then I could still keep up the diet but the exercise, at the same level as I'd previously done it, went on the back burner.

So either I go back into work where I can rest for an hour every other hour or I don't work at all, Those are the only choices as doing a proper 8 hour day, every day, would kill me, unless it was sat at a desk, and required no physical exertion at all, except maybe push a button for 8 hours, although the boredom would probably drive me to the brink of suicide.

I would much rather lose a leg than have CFS, as at least with an amputated leg I could walk with a Prosthetic limb like the guys in the paralympics and I could probably still hike in those welsh mountains that I did as a kid, but with the CFS those days are long since gone.

[irrehoobe]

It's clear you can work, just that you won't work because you don't want to work.

You don't want to do a desk job, but how often do you spend on your computer per day?

[Ccddfergt]

It's clear you can work, just that you won't work because you don't want to work.

You don't want to do a desk job, but how often do you spend on your computer per day?

I definitely want to work, so I don't know where you get the idea that I don't want to work.

But without certain conditions it would be impossible at present.

And yes I do use the computer each day but its not for hours on end, I just can't sit at a desk all day, the pain in my back and legs is too great, not to mention the fatigue of actually concentrating on something for hours on end.

[mikefertynnz]

Illnesses like these are unfortunately not recognised as something that is enough to receive financial support.

Personally, I suffered badly with crohns disease for almost 3 years. I didn't want to pack in my job because I knew i'd get nothing. So I went to work every day, which was a nightmare. I won't go into any detail, but i'll just say it's lucky there's a gents toilet opposite my office.

Get a fecal transplant. Not kidding :/ I have read success after success story of digestive tract disorders being repaired by a fecal transplant. Sounds gross, is gross, but it lines intestines with good bacteria. Most bowel ailments are due to antibiotics killing the good bacteria and replacing it with bad.

[Kolokireo]

Get a fecal transplant. Not kidding :/ I have read success after success story of digestive tract disorders being repaired by a fecal transplant. Sounds gross, is gross, but it lines intestines with good bacteria. Most bowel ailments are due to antibiotics killing the good bacteria and replacing it with bad.

CNN even had this in the news the other day. It's really gaining traction.