Wednesday, 27 June 2012

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 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.

Tuesday, 5 June 2012

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.