Half a life?

Musings about the half of my life since I became ill and disabled.

At the end of this week I will turn 34.
Coincidentally it is exactly 17 years to the day that I went into hospital with what was thought to be a "minor head injury" following an accident during a handball match. We now know that it was in fact either the trigger of my lupus or my first real nasty lupus flare, although, because it "pretended" to be MS it baffled doctors for quite a while and I didn't get diagnosed until 4 years later.

Whichever it was it marked the start of my illness and subsequent disability, a completely life changing event. I went from an active sport loving teenager just about to finish school to someone stuck alone at home hardly able to sit up.

A half life biography

Eventually as the illness fluctuated and the doctors did get a grip on things matters improved. I was able to go back to school and get my A levels. I went to university to do a chemistry degree. Unfortunately the illness  worsened dramatically at the end of my first year and I got kicked off the course for "health and safety" reasons. My doctors advised me to abandon university and return home. Knowing that if I did I would probably never leave again, I refused and instead started a maths course from scratch. This was a really good decision as I turned out to be talented and maths is something you can do from your bed!

The next few years were very hard. My illness and disabilities were increasing. I had to give up every single hobby and sport I used to do, even those I had relearned to do from a wheelchair, like archery, and the new hobbies I had started like playing the clarinet and saxophone. I needed care, deteriorated from walking stick to wheelchair, was often so ill I was in hospital and even when not, could rarely attend lectures. Despite all this I finished my degree, graduated top of my year and got a golden hello award with my funded PhD place.

My PhD years were really fun and are among my happiest memories despite being highly difficult physically with many new symptoms developing, such as epilepsy and a rapid deterioration of my muscle condition. I made some very good friends I think I will keep for life. One great memory is trundling down the aisle in my electric wheelchair as bridesmaid at my best friend's wedding! I was terrified I would roll over her veil!

My PhD was also successful. I published a very good paper and on the back of that obtained an all too rare EPSRC funded postdoctoral research fellowship at the end of my PhD. My illness was getting worse and worse so I went 75% part time so that I could manage. I "officially" worked for a further 5 years. However I was off sick for most of the last 2 and eventually went on to long term sick benefits. I held out until I sent off the last paper I was working on for publication. At this stage though my memory and concentration were so shot that often I didn't recognise my own work from one day to the next or remember conversations I'd had with colleagues. When you're trying do do international research, this is a slight issue! I'd also had a couple of serious health scares.

Despite my sadness at having to give up work, I'm very proud of the work I did. We published some excellent papers in our field and as a result the group in which I worked ballooned from just two doctors and two PhD students when I started my PhD to one which now comprises 10 permanent members, 2 research fellows and 7 PhD students.

After giving up work I kept busy looking after my little god daughter and doing various enjoyable hobbies before eventually getting involved in disability activism. This became very successful when I co-authored the Spartacus Report. This and other projects with We Are Sparacus, in particular "Past Caring", took a lot of my time last year before I eventually had to call it a day as my illness had continued to progress and I could no longer manage.

I'm now at a slight crossroads. I'm never bored as I still have many hobbies but am not sure of any long term goal and am unused not having one.

Half a life?

So I have now officially been ill for half my life and my entire adult life. When I first got sick I used to think of my life in two parts: pre and post illness. I felt I only lived properly for the first half. I wanted to get better so I could start "living" again. I've realised that I don't do that any more. I'm not sure when this stopped, although I think it was quite some time ago. I find it is no longer possible to try to imagine my life "if I hadn't got sick".

The illness made me come back to the UK from France where I was finishing school. It made me switch to mathematics in which I had a successful (albeit short) international academic career.  It meant I took a strong active role in some disability activism.  It did make me give up things I loved like sport, but it also meant I tried other things like archery, learning the clarinet and the saxophone and playing in a concert band. In time as the illness continued to progress I also had to give those up too, but those are experiences I might otherwise never had had.  On a personal level it has shaped the person I am. I have some wonderful friends and am godmother to a beautiful 4 year old. These would not be part of my life otherwise. There can be no going back.

That said I do still wish I wasn't ill right now. I don't mind the purely "disability" issues quite so much as there are usually ways round them. Getting round the illness is far harder. Being "healthy and disabled" and being "sick and disabled" are two extremely different things.
When I was less ill and closer to the former, there were still ways of working around my illness and having a job and an active social life outside my home. But at this stage of the illness I can see no way round it and my life has become far more limited in the past 2 years.

But all in all I am usually content and often happy. I have some good friends and supportive family. I am always busy even if I cannot move from the daybed in my lounge 95% of the time. I am always bemused when I hear people bemoan that they are bored!

I have had to radically change my activities and hobbies and my life today would be unrecognisable to that of the young 17 year old who was hurt 17 years ago. She would most probably be horrified. In fact if I remember correctly, before the accident she once blithely said that if she couldn't do sport she would want to die! But then she hasn't had the benefit of 17 years of living and adapting and inexplicably finding that life is incredibly enjoyable under circumstances that most people would outwardly judge are not. Which, incidentally, is why no one should EVER judge someone else's life.

Half a lifetime of being ill? Yes. Half a life? No. Not only have I done a lot while being ill but I have enjoyed life while I have done it. It has been one heck of a rollercoaster ride and I am willing to bet it will continue to be.
Right now I do feel at a bit of a crossroads and am still adapting to having stopped work. I feel I want to find some sort of long term goal and am very unsure of what I can do. But hey! So far things have had a habit of working out in the end. Bring it on. I'm not done yet.

ESA SOS: the world's silliest interview

On January 28th the government are changing the rules governing ESA, the benefit given to those who pass the Work Capability Assessment (WCA) and are found too sick to work.

Rather sneakily these changes are billed as "minor" modifications and so don't need approval. It was only by careful vigilance of disability campaigners that they came to light at all, with a full briefing written by Sam Barnett Cormack in a project led by Sue Marsh called #esasos.

See here for the original DWP memo and see in particular parts 15-18.

The two changes causing concern are these:

1) The WCA assessor can now "imagine" how an aid would help the claimant whether or not they have it, whether it is available, or how long the waiting list might be. This includes wheelchairs, guide dogs etc... They don't need to discuss this with the claimant.

Since they don't have access to medical notes it could therefore be the case that the claimant has tried a given aid and it has been unsuccessful, or that a particular aid is unsuitable (for instance a doctor does not want their patient to start using a wheelchair yet), or that it is simply unavailable (for instance guide dogs are very difficult to get).
Based on this "imaginary aid" the assessor can declare someone fit for work.

2) Many illnesses and disabilities have both "physical" and "mental" effects and in the WCA these are separated into two sections of a form.

• For instance taking opiate type painkillers may cause drowsiness and lack of concentration, which is put down in the "mental health" section.
• Some conditions such as MS and lupus can have both mental health (eg lack of concentration, memory and cognitive problems) and the better known physical symptoms. Typically someone with these conditions will have symptoms in both parts of the form.
• Vice versa some mental health conditions can give rise to physical symptoms either from the condition itself or as a result of the side effects of often powerful drugs the patient is obliged to take.

From now on only the physical effects of a physical illness/condition may "count" and vice versa only the mental effects of a mental health condition. Everything else will be ignored.

This is simply farcical.

World's Silliest Job Interview:

Employer:  "Good morning. Er, sorry for asking but I can't help wondering why you are dragging yourself across the floor..."
Interviewee:  "Oh, I'm not... I'm using my imaginary wheelchair. Here we go."
*reaches interview chair and climbs up off floor into it*
Employer: "Um... Won't you have trouble getting around the office?"
Interviewee: *cheerfully* "Not at all. As I said, I will be using my imaginary wheelchair."
Employer: "I see... " *scribbles on notepad*

Employer: "So the job entails mostly general admin work and... *discussion about job ensues*
(...)
Interviewee: *yawns*
Employer: "Sorry, am I boring you? You seem rather unfocussed and tired."
Interviewee: "Ah, well I usually have to rest at this time of the day. And we've been talking a while so I'm finding it hard to concentrate. It is because of the morphine painkiller I take. But if I don't take them I can't work because of the pain. I'm also quite forgetful as another aspect of my illness. You might find I type out the same letter twice and forget to write one or two."
Employer:"Uh...."
Interviewee: " But don't worry. We can completely ignore the fact that that happens, because those are mental health issues and I have a physical illness." *smiles brightly*
Employer: "NEXT!"

While I have written this in a light hearted way there is nothing funny about the fact that people with serious disabling symptoms will have them ignored and found fit for work when in fact they are not.

If you agree this is absurd, please contact your MP.
You can do this via Write to Them website.

Also see other blogs who have written about this in particular:
Ekklesia (Official Briefiing about #esasos and Sam Barnett Cormack briefing)
Diary of a Benefit Scrounger (Sue Marsh's blog)
We Are Spartacus (with example letters to send to your MP)

PIP, a mobile disaster

NOTE: PLEASE VISIT THIS WEBSITE FOR DETAILS OF HOW TO CONTACT YOUR MP AND FIGHT THESE CHANGES.

DLA and PIP

Disability Living Allowance (DLA) is being replaced by a new benefit called Personal Independent Payment (PIP). Surrounded in controversy, the government has said it aims to save 20% expenditure and it is expected that 330,000 disabled people will lose their benefit entirely by October 2015 and 607,000 by May 2018 ( see DWP impact assessment Dec 13 2012).

DLA is an essential benefit. Paid to both working and non working people it helps cover the extra costs of disability. It comes in two components. One covers mobility and is paid to people who have trouble getting around and the other covers personal care. Each has different rates to allow for differing levels of need.

The mobility component is particularly important as it can be used in the Motability scheme whereby instead of receiving cash the disabled person can lease a car for 3 years. This is vital for people who need larger or adapted cars for their wheelchairs or disability equipment, which can be costly. The scheme may also be used to lease electric wheelchairs which are not always provided on the NHS and can also be prohibitively expensive.

The mobility component comes in 2 rates and only the higher is eligible for the Motability scheme. The same will be true for PIP, with a standard and enhanced rate.

The problem is that the goalposts have been moved and the criteria to qualify for the enhanced rate severely restricted.

From now on the only people who will qualify for the enhanced rate are those who can "stand and move" less than 20m (around 60 feet). This includes with the use of aids such as a prosthetic, crutches or a walking stick.
Anyone who can move further than this distance will only qualify for the standard rate, even if they then need to use a wheelchair for longer distances.
Furthermore, anyone who can "stand and move" more than 50m becomes ineligible for the benefit completely.

This is a huge change and far more strict than before. The various qualifying distances for ESA and DLA are 50 and 100m, not 20 and 50m.
20m is a very short distance indeed:

A bendy bus is roughly 20m long...

Example:

To give you an idea of what this might mean, take someone who is able to walk with a walking stick around their house and from their front door to the road or garage (eg as above) to their car but would have to use a wheelchair once they arrived at their destination.
At the moment they would get high rate DLA. They would qualify for Motability and could get an adapted car.
Under PIP they only get standard rate as they can "move" more than 20m. They lose Motability and their adapted car.

It is expected that at least 480,000 people will lose their entitlement to high rate DLA of which an estimated 100,000 are reliant on Motability. Remember that these are disabled people with high mobility impairments deemed under DLA "virtually unable to walk".

See Jane Young's excellent blog for more details.

The Reasoning and issues:

The reasoning behind this is strange to say the least.

• 20 metres is considered to be the distance that a claimant is required to be able to walk in order to achieve a basic level of independence in the home such as the ability to move between rooms. 
• 50 metres is considered to be the distance that a claimant is required to be able to walk in order to achieve a basic level of independence such as the ability to get from a car park to the supermarket.  
• 50 to 200 metres is considered to be the distance that a claimant is required to be able to walk in order to achieve a higher level of independence such as the ability to get around a small supermarket.  

The 20-50m case:

If a disabled person can walk from 20 up to 50 metres they are deemed not to need enhanced benefit because they have "a basic level of independence". This is characterised as the ability to walk from a car park to a supermarket.

We now enter the realm of Kafka.
Since the disabled person receives standard benefit, they are no longer eligible for Motability and may no longer HAVE a car in the first place. If they can only walk 50m it is unlikely they will be able to use public transport.
Having proudly walked "independently" 50m to the supermarket from the car park, one wonders what they are to do next. One also wonders how on earth they are going to get back.

If they need assistance or a wheelchair at this point, then quite frankly they should be getting enhanced mobility benefit. It is ludicrous to say otherwise. The cost of the car, wheelchair or help in this scenario easily justifies it.

The 50-200m case:

Someone who is only able to walk 50 to 200m gets nothing at all despite this entire distance being necessary to get around the supermarket. This begs the question of how they get to and from the supermarket if their entire "walking allowance" is used up shopping there.

I strongly feel instead that these people should qualify for the standard rate to enable them to get to and from the shop, since they are by definition unable to walk there. This will help them afford a taxi, car or mobility scooter.

No opportunity to discuss

The government has run two consultations on their criteria. The mobility criteria were harshly criticised and felt to be far too strict. However far from being improved, they have actually been made worse.
While the cut off distance was simply 50m in the draft, it is now 20 and 50m, which will disallow far more people. Furthermore the government has indicated that it will not now accept any further changes and is determined to press ahead as it is. This is clearly wrong since they have introduced with no warning a major change with no opportunity for discussion.


In summary:

I felt that even a 50m cut off was prohibitively strict. But what we have here is a disaster and will ruin people's lives and independence. We WILL see seriously mobility impaired people losing their benefits and their cars, including wheelchair users if they have the temerity to be able to walk tiny distances.
This activity needs to be looked at again, and soon.

ACT NOW!

If you want to ACT, please go to this blog which will tell you how to contact your MP with good ideas of how to drive the message home. This needs to be done so soon as time is running out with Parliament breaking up by Friday Dec 21st.

EDIT: I originally said the reasoning was "strange". Upon further reflection I have come to the conclusion that a decision has been made that the only people who will get enhanced mobility are those who cannot walk outside AT ALL however short a distance.

This is an incredibly harsh criteria. Many people can walk very short distances. This is why we have blue badge spaces. They may not be able to walk further than that and may need a wheelchair if further away or for longer trips. These people will face very high costs, many will rely on cars for transport, and will face poverty or being housebound with the removal of high rate DLA.



My story:

This is a subject close to my heart. 10 years ago, with a deteriorating muscle condition, I started putting money aside from my mobility DLA, and, when the time came, bought a good electric wheelchair. Thanks to this I was able to continue with my PhD without fuss or interruption and later get a good job.
Under these new PIP regulations I would not have qualified for enhanced mobility and would not have been able to afford my wheelchair. I would have been housebound and would never have been able to accomplish what I did.

The Autumn Statement and Disability Benefits

You might quite understandably be mistaken in thinking that disabled people came out quite safe and sound from this year's autumn statement. After all our chancellor announced that although restrictions were going to have to be made to most welfare benefits, disabled people and carers would be supported and disability/carer benefits would not be affected.

The problem is that in the next breath he announced that, along with most other working age benefits, ESA would be included in the restriction to a 1% annual growth for the next 3 years. Well below the rate of inflation this amounts to a cut in real terms.

ESA is mostly paid to disabled people who are too sick to work. To qualify for this benefit they have to have undergone rigorous testing and passed the much maligned WCA (Work Capability Assessment) administered by ATOS and been classed as unfit for work. Some are considered to be able to work again at some time in the future (possibly years). These are put in the WRAG (Work Related Activity Group). Others are considered too ill or disabled ever to work again and are put in the Support Group.

So how can the chancellor be promising disability benefits be exempt when ESA is included in the cuts?

Well turning to the small print of the Treasury Costings (p33) we see the following:

“The following benefits, tax credits and payments will be up-rated by 1 per cent for 3 years from 2013-14:
• The main elements of Jobseeker’s Allowance, Employment and Support Allowance (ESA), Income Support, applicable amounts for Housing Benefit;
It will not apply to the premia within these benefits relating to disability, pensioners, and caring responsibilities, the support group component of ESA, or the disability elements in tax credits, which will be uprated as usual.”

A claim for ESA comprises:

• A main element of ESA (the bulk of the benefit)
• A Support Group component or WRAG component (Anyone unfit for work gets one of these after passing the WCA)
• Any relevant disability premiums (not everyone qualifies for these)

So what does this mean?

For both WRAG and Support group claimants the main element part will only rise by 1%.
For WRAG claimants the WRAG component will only rise by 1%
For Support Group claimants the Support component will rise by inflation.
For both WRAG and Support Group claimants any disability premiums will rise by inflation.

IN SUMMARY:

• WRAG claimants who do not receive disability premiums will see their benefit restricted to 1% growth for 3 years.
• All Support Group claimants and those WRAG claimants who receive disability premiums will see their benefit restricted to a growth slightly higher than 1% but still significantly lower than inflation. In fact it works out at approximately 1.4% according to DRUK.

ESA claimants are seriously ill and disabled people who have fairly and genuinely been found unfit for work. The statement that disabled people will be supported and disability benefits will be unaffected is totally and unequivocally untrue. It is high time that someone stood up and said so.

The 24 Rules

As I have been in a lupus flare recently I have been watching a lot of TV. I have become acquainted with 24, a TV drama series about a dramatic day in the life of Counter Terrorist Agent Jack Bauer. This reminds me of watching a series version of James Bond. Completely incredible, very silly, but totally fun and entertaining. I am now on to series 8 and have come up with this set of necessary rules and ingredients for any series of 24.

The 24 Rules and Episodes

 Episodes

Jack Knows Best Episodes (several per series)

The people in charge are being really stupid so Jack takes matters into his own hands, disobeys orders and goes and does something completely different. For good measure he recruits several colleagues who start working for him covertly (with suitable meaningful looks in the office). Of course, this is all ok in the end and no one gets prosecuted because he is right.

The Capture Episode

Jack gets captured by the “baddies” (Oh no!). Judging by the frequency this happens, Jack must be a singularly inept special agent. Like James Bond Villains for some reason no one ever just shoots Jack and is done with it. On the plus side, unlike James Bond Villains there isn’t any monologuing and revealing of ultimate plans.

The Amazing Escape Episode

Restoring my faith in his abilities, Jack escapes his captors in a daring move involving a paperclip, a paper cup and a liberal dose of violence.

The Noble Sacrifice Episode (or not)

A situation arises whereby the only solution is for one person to sacrifice themselves for the cause. Of course Jack always volunteers himself. Cue much soul searching and patriotism. However at the last minute someone else jumps into the breach and saves the day (and Jack). Jack is very angry but we get to keep our hero and 24 doesn’t come to an abrupt and early end.

The Mole Episode

After a well rehearsed plan goes desperately wrong, it is revealed there is a mole in the agency. Everyone starts watching everyone else with suspicion. This happens so often I can only conclude the job description includes a tickbox for “spy”.

The Bluff Episode

Much to everyone’s dismay a well trusted and well liked colleague is revealed to be the spy. However later on it will be revealed that this was all a mistake and the spy was someone else. Alternatively they were working under cover and somehow had forgotten to inform the people in charge (a completely understandable oversight).

The Double Bluff Episode

In later series, fans having become used to the bluff scenario, writers introduced the double bluff where it transpired that the person really was a spy/working for the enemy after all.

Rules

The Return

An old character from a previous series will make an unlikely return despite circumstances from previous series having clearly stated that they had been ruled out of play. In the later series I started awarding bonus points for the “Lazarus effect”, ie dead characters coming back to life.

The Amazing Recovery

Having been captured by the enemy and beat/tortured within an inch of his life (in fact even killed on one occasion), within a few minutes Jack has shrugged it off and is jumping around like an Olympic athlete (am I allowed to say that at the moment or is it copyrighted?).  Occasionally the script writers will make a concession to the beating he has received and he will roll a shoulder from time to time and wince, before resuming his acrobatics.

Enemy Bases

With the whole of the US to choose from, for some reason all baddies and bases are never any further than 20 minutes helicopter ride from Jack. I strongly recommend the baddies review locations of FBI and CTU headquarters and plan accordingly.

The hourly threat

Regardless of events something bad always happens bang on the hour in the life of Jack Bauer. If I were him I would recommend that the FBI and CTU go on heightened alert at that time.

It isn’t over!

After foiling one threat, “something dreadful” always happens and it turns out that “it isn’t over” (hushed dramatic voice required). Of course it isn’t. The 24 episodes haven’t finished yet.

So far all these ingredients have been present in all 7 series I have watched. I will look with interest to see if I find them in series 8. Drinking game anyone?

Attack of the Spoon Pixies

The term "spoonie" is a familiar one to many people working in disability and chronic illness circles. Put simply it describes anyone who experiences debilitating fatigue and has had to learn to continually plan and pace their daily activities. The name comes from the essay "The Spoon Theory", and is an excellent way of explaining fatigue to relatives or friends who just "don't get it"!

In essence energy is represented by a number of spoons. While people who are not ill have unlimited amounts of spoons, for some unknown reason "spoonies" only have a set amount each day. Every activity, be it getting dressed, eating, or going out uses up a certain amount of them. The harder the activity, the more spoons are used up. Once there are no spoons left, you're stuck for the rest of the day! Hence why a "spoonie" has to be so careful and plan their days in advance.

Some spoonies are even more unlucky and their number of spoons varies considerably. Some days they have a lot of spoons and can do a reasonably amount. Other days they have hardly any spoons at all.

Why is this?

We have given this much thought and finally have the answer everyone has been waiting for.

SPOON PIXIES!

Spoon Pixies belong to the same species of creatures as the Tooth Fairy and are a cousin to the Common Garden Gnome.

Like the Tooth Fairy they visit at night when you are asleep.

While the Tooth Fairy takes away a tooth and leaves some money behind, the Spoon Pixie is a much nastier piece of work. It steals spoons but leaves no trace of its visit.

This is why it has (until today) left both patients and doctors completely baffled.


While we cannot prevent visits from the Spoon Pixie a number of suggestions have been made.

1. The first of course is to make sure spoons are carefully locked away before going to bed. 
2. Secondly, it may be possible to stop the Spoon Pixie. Leaving sticky tape beside the bed may prevent it from reaching its goal. 
3. Finally, a much more daring course of action being researched is to actively bribe the Spoon Pixie. In this way it may even be possible for the Spoon Pixie to return some stolen spoons! Leaving coins and shiny objects under the pillow or by the bedside *may* entice the Spoon Pixie into a "spoon exchange". Research in this area is also ongoing. 

We are open to more suggestions.

Please don't come in

EDIT: August 27th 2013.
Jamie Oliver has today launched into a tirade against "poor" families with large TVs. This sadly once again makes this post relevant.

_________________

I hate strangers coming into my flat.

I live in a fairly roomy ground floor 2 bedroom flat. It took me quite a long time to find as I needed somewhere which was wheelchair friendly and large enough for me to get around in.
At the time I was still working and so I wanted it to be close enough for me to get to the office in my wheelchair as public transport would have been a disaster!

I have now lived here for about 8 years. My landlord is a good one and the property is kept in extremely good condition and has been repainted twice since I moved in. I am extremely lucky as the rent was very low from the outset and hasn't gone up much over the years. My neighbours above me pay around £100 more per month for exactly the same flat. (I'm hoping my landlord doesn't find out!).
After 2 years (bureaucracy!) the flat was finally adapted to be almost fully wheelchair accessible (rather than simply wheelchair friendly) with, for instance, a nice level entrance instead of bumping myself at speed up a step with a kerb climber!
Although semi-furnished, while I was working I bought some reasonably nice furniture as well as some luxuries such as my tropical fish tanks, a nice big TV, a games console, a big laptop and a blu-ray player (I'm a bit of a techno-geek!).

I was lucky that I had a well paid job so I was also able to put a bit of money aside during those years so that should any of these things break down, or should I need to replace more essential things like my electric wheelchair, I should be able to do so at least once.
I am also in the very lucky position that other essential items such as cookers, washing machines, boilers etc are the landlord's responsibility, not mine.
The flat is kept clean and (sort of) tidyish thanks to the help of my carers I employ through the direct payments scheme through social services (although I would note that I have to contribute 100% of my so called "disposable income" from my benefits towards my care, which comes out of my DLA care component and ESA disability premiums).

However my illness continued to progress and my disabilities worsen. I eventually had to give up my career 2 years ago and go on benefits. My low rent really came in useful here as it meant that my property still came below the upper limit for LHA (replacement of housing benefit) even with recent changes. (Had I been living in my upstairs neighbours' flat, I would have had to move as LHA would not cover their rent).

But this is where things all start to go a bit pear shaped.
Newcomers to my flat are not at all impressed.
It is far too "nice" for someone on benefits, even disability benefits.
They are perhaps unaware that it is the landlord, not myself who pays for the decorating of my flat.
It perhaps doesn't occur to them that I NEED more floor space and that my electric wheelchair cannot negotiate most properties. Furthermore if I DID move social services would have to pay out to readapt whatever property I moved into with new ramps etc...
They certainly don't know how much my rent is, nor that for whatever reason it is very low and I am simply very lucky.
It doesn't matter, nor would it probably occur to them that not one of the expensive items here were bought with benefit money and that I would NOT be able to buy these things today or if I had been on benefits all my life.**
In fact it usually does not occur to them that I may not have been on benefits all my life but worked until just 2 years ago. Total shock and surprise normally greets the "revelation" that I used to have a "proper" job.

I very unusually had to use an agency carer today I had never had before. She said "what a nice flat" I had. After looking around she pointed out that although I was sick "I had a lot of expensive things around me". She then asked if I was on benefits and added she "assumed I don't work?..."

THAT is why I hate new people coming to my flat. I am now ashamed and feel the need to justify having the things I do, even those I worked hard to get and bought with my own wages.

This particular carer was perhaps out of line, but isn't she just saying what many people think but just don't say?

It keeps me wondering what people are saying behind my back.
Paranoid? Maybe. Realist? Probably.


**Not that I think people who have always been on benefits should not be allowed to budget and save up for something nice, but in my case I would certainly have budgeted very differently and probably bought slightly different items on the income I am on today.