…and a new car!

…and a new car!

In order to get my new wheelchair, I also had to get a new car.  In the UK we have a benefit called Disability Living Allowance (well, for now, until the government rip it away.)  It’s a brilliant concept, designed to help cover the many extra costs of being disabled.  You can still work and claim it, as long as you meet the criteria.  There are two elements to it – Care and Mobility.  You can get one or the other, or both, and there a different rates within it.

If you’re awarded High Rate Mobility, you have three options.  You can receive it in cash form, or you can swap it for a car, or a mobility aid (wheelchair or scooter.)  If you pick the car option, you go through a charity called Motability, and in swapping the payment you get the car, insurance, breakdown cover, etc.  Everything except petrol.

There are a range of cars on the scheme, starting from basic where you simply swap the payment, to larger or fancier cars – where you pay an upfront cost beforehand.  One issue I have with this is many wheelchair users need a larger car to fit the wheelchair in, or the hoist.  It’s not a choice to have a large car for any other reason.  I personally, would be happiest with the smallest car possible (other than a Smart Car!) but I had to get a bigger one for practical reasons and that costs a much larger down-payment.

But it’s a great scheme and they also offer adaptations.  Some are free, such as hand controls.  Others you pay for.  They also have a grants system for low-income people to apply for to help towards the cost of either the car itself, or adaptations.

This scheme alone is responsible for thousands of people with disabilities leading an active, independent life, and being able to access the workplace.  Seriously, do you know how much adaptations cost?

So, my first Motabilty car was a Ford Focus.  I really liked it, and I had a hoist, but when I needed to get a better wheelchair, I found nothing would fit in the car that met my needs.

After looking at seventeen different car dealerships, and trying out what felt like hundreds of cars – I arrived back at Ford.  Their C-Max is based on the Focus, and isn’t much bigger – but it is taller and higher.  This helped both the hoist, and getting in and out.  I now have the car, and will use the pictures to explain more.

The front (obviously!)

The front (obviously!)


The height makes it much easier to get in and out

The height makes it much easier to get in and out

There are lots of things to make driving easier - like it parks for you automatically

There are lots of things to make driving easier – like it parks for you automatically

The boot opens and closes at the touch of button, which can be reached from the wheelchair.

The boot opens and closes at the touch of button, which can be reached from the wheelchair.

The hoist for the wheelchair

The hoist for the wheelchair

The hoist in action

The hoist in action

The new hoist has four-way control - which is great!

The new hoist has four-way control – which is great!

Cars vs Sleeping

Cars vs Sleeping

I can’t drive far, so it means my poor mum has to drive me to hospital appointments, and she HATES driving in central London. She’ll do it, unlike a lot of people, but it’s not fun.

It’s already a worry before we leave that we’ll get to the hospital and they’ll be no parking. This has happened loads of times before, and usually results in madness and mayhem. And that’s putting it lightly.

Picture this: last hospital appointment at the University College Hospital in London, which has six blue badge spaces. We’d been stuck in traffic and were now 45 minutes late for the appointment and of course all six spaces are taken. So we pull up outside, put the wheelchair together and mum sends me on my way while she goes to hunt for a space.  Wheelchair battery promptly dies, so I’m having to use my feet to pull the wheelchair along (Fred Flintstone style) at 0.000000000001 miles per hour.  I’m given the wrong directions and head to the other end of the department, before being sent back, and arrive at the nurses station way, way past my appointment time and promptly burst into tears and have a mild panic attack.  Luckily, they took pity on me and they let me see the consultant at the end of his surgery time.

So parking, and being able to have someone with me? Helpful. Anyway, as a passenger in a car, I have an unfortunate issue of falling asleep. I’m generally close to exhaustion at all times, and there’s something about a car I obviously find soothing, as I can’t fight it and within a few minutes I’m usually out of it.

However, my mum struggles with the whole driving in London thing and trusting the sat nav, so I get woken up every 15 minutes with increasing franticness, “Which road do I take?” I mumble an answer, and then go back to sleep again. This apparently stresses her out, and she’d rather have an awake passenger when going to London. Whoops.


My hatred of Queues

My hatred of Queues


I see a queue and my heart sinks.  Nothing to do with impatience, or having somewhere else to be.  Nobody likes a queue, but I hate them.

Do I really need to stay and pay for this item?  I’ve used so much energy getting here, getting the item.  The place wasn’t wheelchair accessible, so I’d made the gamble:  to do the shop race.  Get in, grab item, get out. It’s just a small shop, so no trailing down aisles.

I’d got the first parking space, dodged the people milling around, and found the item I needed in record time.

Then I turned the corner and saw the queue.

My heart drops. I want to leave, but I really, really need it.  It can’t wait.  I have to get it today.

So I join the queue with trepidation.  And immediately it begins – the ache intensifies, solidifies into an unmistakable gnawing, right in the bones.

I eye the people in front of me, judging them.  That one’s near the front and hasn’t even got their purse out, one of the cashiers yawns.  Hurry, hurry, I plead. But they continue leisurely, with all the time in the world.

The pressure begins, and I’ll soon by at my point, my limit.  I begin to sway from foot to foot, trying to ease the pain.  But it builds, and they continue to amble on.

I begin to plead with them in my head.  Please leave the queue.  Please see I have just one item and let me go first.  Please.

I know this won’t happen – why should they?  They are in front of me, it’s first come, first serve: the British way.

I feel sick.  The pain is intense.  Like someone has their fist around my spine and delighting in crushing it, bit by bit.  It travels up into my shoulders, getting tighter and tighter, into my legs, my feet.

Just one more person and I’m at the front.  Then they head towards one of the cashiers, but it’s a complicated return.

And then it’s my turn, oh thank goodness, I take a step towards the second cashier, but he stands up with a shrug and declares himself closed.  I want to cry after him, no, please…  He instead heads towards some children milling about by a second counter to serve them.  They don’t even care, they seem annoyed he has interrupted their conversation.

The other cashier is still wrapped up in the return.  I can’t breathe.  Tears sting my eyes – over a goddamn queue.

I’m shaking.  Why did he leave?  He could see my stick, surely he must have seen my pain?  Why isn’t pain visible – it would make life so much easier. They give us parking spaces closer to the shop, but queues are just tough damn luck.

Finally, it’s my turn, for real this time, and finally I can limp back to the car and collapse with relief.  The pain stays for days.

I hate queues.

Visit to the Ideal Home Show 2012

Visit to the Ideal Home Show 2012

One thing that still bothers me after all this time of having mobility issues, is the problems that visiting new places brings.  I’ve just spent the weekend in London as a birthday/Mother’s Day treat for my mum.

Trips like this involve a lot of planning.  One particular issue is finding close parking, but it’s pretty hard when London’s involved as it’s such a maze.  Even having parking near enough doesn’t mean there will be dropped curbs, or that the wheelchair won’t get stuck, or the battery won’t run out, and many of these issues you can’t plan away.

On Sunday we went to the Ideal Home Show.  Online a ticket was £14, but because we needed a carers ticket, you couldn’t purchase it in advance so we had to pay on the day – now £18.  (Strike one!)

The Earls Court website informed us there was plenty of free blue badge spaces close to the entrance – great!  This helps with the dropped curb issue (which doesn’t just happen in the middle of nowhere, it happens all over the place.)

We arrive to find a whole row of blue badge parking, except every single one is cordoned off.  Not filled, which we’d just have to live with – just roped off for no reason.  The car park is available though, they tell us with a smile, but it charges by the hour.  Having a wheelchair takes a lot longer to get round things, so that added an extra £25 to our day.  (Strike two!)

Credit to: edouardo

Credit to: edouardo

The car park is at the back of the building – so getting to the exhibition was quite the trek. (Strike three!) It would have been totally impossible without the wheelchair, so how ambulant disabled people coped, I don’t know.  Actually, I do, having been to The Back Pain Show at Olympia recently, the same company as Earls Court, we found the parking at the back of the building and having to pass two other exhibitions to get to the right entrance, once of which being a wedding show.  I’m not saying disabled people don’t get married, but one assumes more disabled people will be heading to the show about combating pain.  We were hiring a wheelchair at the exhibition, but they hadn’t thought about bringing it round to us – so by the time we got there I was almost throwing up in pain.

Back at the Ideal Home, my wheelchair battery was playing up, and by the time we made it from the car park all the way there, I only had a tiny bit left.  We headed straight to the top floor for lunch, as I worried about how the hell we were going to get around with minimal battery.  We’d bought the charger with us, in case there was a spare plug, but they were all up too high to reach.

We spotted a tea room style area for lunch, and headed over.  There was plenty of free tables at the back, but when I asked if there was a route for wheelchairs, we were met with a blank stare and told it would be a half hour wait for a table we could get to.  (Strike four!)  Instead we headed to an Italian styled cafe, which sold nothing Italian.  We shared a sandwich, one packet of crisps and a drink each for £15.  Ouch.

The layout of the exhibition was pretty good, with enough space to negotiate and view the stalls.  A kind stallholder allowed us to charge my batteries while we tried out some pain relieving equipment.

I do have some rules regarding navigating with my wheelchair.  It’s actually quite hard to steer, so I really appreciate those that step out the way.  I really do.  I avoid people as much as possible of course, and I do my best to halt for children.  However, if you stop dead in front of me, or walk backwards into my path – you are fair game.  Be warned.  Plus, nobody needs to walk backwards, so why do so many people do it?!

Even with the space, having to constantly stop for people and wait to look at things, it took pretty much the whole afternoon to get around the top floor.  By the time we got down to the actual ‘home’ section, we only had forty minutes to go.  To be fair, we don’t have any money and don’t own our home – so kitchens, bathrooms, etc don’t interest us.  And no, I don’t want to buy any goddamn solar panels.

The show homes were not wheelchair accessible, and seemed to only be accessed by stairs, which was a shame, as I’d have been interested to see them.  (Strike five!)

We were both pretty exhausted by then, and tried to head to the exit.  After going round in circles, we asked a member of staff the way out – one of which who grunted and pointed to the lift.  We got out at the next floor after getting the wheelchair jammed in the lift due to it not stopping straight, which broke my footplate, only to be told we’d been on the right floor previously.  The next member of staff we asked pointed vaguely, and again was wrong, and when we finally found the exit no one was there to operate the stairlift.  When we called for help they said we had to find another exit.  (Strike six!)

All in all – a tiring day, that wasn’t worth the money we paid, although we got some interesting bargains whilst in there.

Above all, I was disappointed such a big organisation hadn’t thought more about accessibility.  Signs to the exit and signs for wheelchair access would have been helpful, and why an earth did they prevent access to so many disabled bays?  Staff should be trained better as well.  Lower-cost parking for blue badge holders would be very appreciated – many of us don’t have a choice but to drive there, or not come at all.


Demonising the Disabled

Demonising the Disabled

Ron Liddle from The Sun wrote a column condemning the ‘fake disabled’. He says, “My New Year’s resolution for 2012 was to become disabled. Nothing too serious, maybe just a bit of a bad back or one of those newly invented illnesses which make you a bit peaky for decades – fibromyalgia, or M.E.”

Peaky? This describes people that often become totally bed-bound, are in crippling pain, too exhausted to lift your head off the pillow or have to use a wheelchair. ME regularly kills people after ravaging their immune system, although the press keeps quiet on that. People don’t speak of the young people having to live in their beds due to the pain Fibromyalgia causes.

Another charming person, this time James Delingpole from The Telegraph, writes in support of Ron, claiming that there are eleven million people now saying they are disabled, and this it what’s crippled the economy. Eleven million disabled people there may be, but only 2.6 million claim Employment and Support allowance, the ‘not able to work’ benefit. The other 8.4 million actually work. Crazy, I know! (No reflection on those that can’t work meant, just that there is an assumption that disabled people don’t partake in employment.) It may be many people now fit the definition of disabled, which is ‘A physical or mental impairment which has a substantial and long-term adverse effect on a person’s ability to carry out day-to-day activities’ but the vast majority of disabled people try their best to work.

Another couple of points on these multitudes of disabled people crippling the economy is that Employment and Support Allowance is around £97 a week, and if your partner earns over £5343 a year you get nothing. The governments own figures put the fraud rate for ESA at 0.3%. The fraud rate for Pension Credit is 2.3%, but nobody seems to mention that. They are also bringing in a change that people can only claim contributory rate ESA for a one year.  After that year they’re means tested, with a limit of £6000 in savings.

There is another disability related benefit – Disability Living Allowance, that is frequently used to support working. The extra costs of being disabled is significant. Equipment costs a fortune, needing transport on every journey soon adds up, treatment that enables you to work is often not covered on the NHS, heating for those with joint issues, extra cleaning costs, heat pads and so on. So this benefit is often used to pay for all those bits and pieces, or actually extremely important functions that allow people to work, and as a result pay taxes.

This is having a real impact on people’s lives. The suicide rate is constantly increasing and if the changes to DLA go ahead – where one suggested option is to remove the mobility allowance from wheelchair users with the idea a wheelchair makes someone independent, this suicide rate is going to vastly increase – no doubt about it. That ‘free car’ often complained about is something where you can cash in part of your allowance  in return for a leased car.  This allows people to have low-cost adaptations and transportation that meets their needs. The adaptations I needed came to a few thousand pounds, and really the adaptations didn’t amount to that much.

DLA is incredibly hard to get. The stress and torment people have to go through to get it is indescribable. People with terminal illnesses get turned down. This is why the fraud rate is so low. Yes, of course people will always slip through the cracks – it’s easy to lie about something that isn’t personal to you, and even suck doctors in with it.  And these are the other that papers scream about, this 0.5% that makes the news daily – Scroungers!  Work shy!  Liars!  They don’t point out the 99.5% that are genuine.

I’ve just spent three weeks with many chronically ill people, most with multiple painful illnesses, and the vast majority of them worked full time, way past what they should have done. Many volunteered on top of that work, others were carers for other people. Hardly any of them were on the benefits they should have been and were struggling financially. Many had been awarded DLA at a very low rate, when they should have been entitled to a much higher rate, but were too frightened to fight as they will frequently turn around the remove the whole award.

The demonisation of disabled people, fed directly to the media by the government in order to make these changes, needs to stop. Hate crime against disabled people is up by 75%. Seventy five goddamn percent! Probably because every time someone opens a newspaper they find a story they’ve been fed about that tiny 0.5% of people incorrectly claiming Disability Living Allowance, or a story about people claiming they have a “fake” condition like Fibromyalgia to get the so-called free car handed to them.

Credit to bsr dk

Credit to bsr dk

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Keep on, Keepin’ on

Keep on, Keepin’ on

I have a job interview next week, which involves a presentation (eek!).  My work situation at the moment is dire, and this job seems perfect for me.  I could have written the description myself.  It involves planning a new service for older and disabled people – something I’ve been focusing on for some time in my current job and at Fair Access.  I’ve spent weeks planning out and writing my presentation over and over.  I have to map out how I’d carry out the project, my plan for sustainability and all my ideas.


But I’m due back to work next week, and both parts of the interview are on days I have to work (although luckily in the morning, when I’m due in at work in the afternoon.)

I’m dreading going back, it makes me feel sick.  My employer hates me, and makes it obvious at every turn – because when they try and do something impacting my condition I don’t just say yes.

I’m fighting a battle with my local hospital as well.  I’ve asked them to look into my lower back issues – as most other people with the same conditions I do, don’t have the same issues with walking that I do.  Don’t get me wrong, people with Ehlers-Danlos or Fibromyalgia frequently feel pain on walking, or exhausted – but generally don’t have that strict oh my god the pain cut off point.  There is an underlying issue there.  My MRI (that took seven years of begging to get a) a couple of years ago showed some degenerative facet joints and arthritis, but both at a moderate level.  At that point I could walk about 15-20 minutes.  I can now stand for less than a minute.  So my GP and I thought it very reasonable for them to look into it, maybe look at some treatment options (usually injections).  But after a very dismissive assessment, they discharged me.   I put in a complaint, and I got back the most ridiculous letter, once again dismissing me.  So I need to keep battling them.

And finally, for a few days there seemed to be a bit less pain in my lower back, and thought it might be improving a little.  And then it decided to say haha, you’re funny, and has been on fire for three days straight.  I mean it always hurts, but this is just ridiculous.

Crafty Lady

Crafty Lady

I first got into crafting about two years ago, by making cards.  Someone had suggested to me as they’d found a good distraction from their pain.  I soon found I enjoyed it, but wasn’t very good at it.  I then gave jewellery go and loved it.  Eventually I started selling to friends and family, and sell extras at my website www.sparklyplace.co.uk.  I don’t make anything from it – just enough to let me replace beads and findings.

Over time I have found a lot of disabled people are also into crafting of different types.  It’s not surprising; it’s very relaxing and has other benefits.  It gives you pride in something you’ve accomplished, and most importantly – it does give a distraction from pain.  It doesn’t make it go away, but anything that concentrates your brain and means you aren’t therefore focusing on whatever is hurting.

At school my art teachers told me to my face I was terrible; my stick figures run screaming in terror, and I was always envious of my friend’s creations.  While I’ve always enjoyed writing, I didn’t feel I had a creative bone in my body.

I’ve since realised there are lots of ways to be creative, and my art teachers shouldn’t have been so narrow minded.  If I picked up a paintbrush, the results wouldn’t be pretty, but I can design and create a piece of jewellery.

There are some downsides.  Crafting is expensive and can be very addictive.  I, along with many others, find more time is spent buying pretty beads than actually making.  I spend lots of evenings on eBay and bead websites, and then gulp when it comes to paying the bill!  I have then spent a fortune on storage for all the bits and bobs I’ve purchased. 

There are lots of things I’d love to try, but starting a new hobby is a huge outlay, and it’s difficult to try something out without signing up to expensive classes.  I’d love to give pottery a go, glass etching and working with wood.  I’d like to make my own beads, stamp metal and learn how to work with polymer clay.  One day, I hope!  I have just purchased a photography class on Groupon – with the idea of learning how to take better photos of my jewellery.

One particular joy I have found is creating awareness jewellery for various rarer conditions/disabilities.  Anyone can find a pink stretchy bracelet for Breast Cancer, but when you have a condition not many people have heard of, then there is an appreciation for buying a handmade bracelet to spread awareness or to commemorate a diagnosis.  While I do charity auctions, I just don’t make enough to be able to donate to the charities each time which is a future aspiration.  I do supply the Charcot Marie Tooth Disease website with awareness bracelets, and I’d love to be able to do more of that.

If you haven’t crafted before, please do pick something that takes your fancy and give it go.  The cheapest craft I’ve found is a colouring in book.  Hey, it totally counts!

Credit to raymortim

Credit to raymortim

The Beauty of Sleep

The Beauty of Sleep

I would say sleep is pretty important to most people, but when it comes to chronically ill people – good sleep is like gold dust.  A rare and a magnificent thing (if gold dust is particularly magnificent?).  Sleep becomes difficult with a lot of conditions, whether they can’t sleep, don’t sleep well, find it difficult to sleep due to pain, or sleep way too long.

My sleep pattern is all over the place.  It’s often a few hours interrupted by pain, often not getting to sleep until 4:00-5:00am.  Then I’m falling asleep throughout the day as I didn’t get a good enough sleep.  Then every week or so I’ll sleep far too long – sometimes 16+ hours but still don’t reach that final deep stage of sleep – so I wake feeling unrefreshed.

I often have bouts of insomnia where I’m awake all night, and a mess during the day.  Insomnia is something I wouldn’t wish on my worst enemy.  Whether it’s one night of sleeplessness, or much longer, it’s just horrible and when it happens to me, the fine line between being a bit of a wreck, and being in the gutter shatters, and I’m a cranky, exhausted, mess.

This happened inconveniently for the days running up a wedding at the weekend, and I spent the whole of the ceremony – pretty sure captured on camera as well, desperately trying to keep my eyes open and mostly failing.

It usually causes splitting headaches, moodiness, and the inability to enjoy anything.  Your bed becomes all you can think about, and the further away that elusive ‘collapse into bed’ moment is, the worse you feel.

During my teenage years, and culminating in total insomnia during my first year of university, I’ve tried to practise better ‘sleep hygiene’.  I have rules, although I often break them!  I put these rules together myself from bitter experience, but the Pain Clinic also teaches them.

1)         First and most importantly, no sleeping during the day.  If you really, really have to sleep because oh no, your eyes are closing and can’t stay awake any more – make sure it stays under an hour.  Set an alarm.  I tend to find sleeping during the day equals hours awake at night, even if the nap was only brief.  This is an almost impossible one I break often, sadly.  If you really do have to sleep – don’t use your bedroom due to rule 2.

2)         Don’t relax in the bedroom or even read.  It should be for sleeping only (and you know, that one other thing!), so your brain connects your bedroom to sleep.  This does work; if I walk into my bedroom I usually feel a wave of tiredness.  I want to try and get the best sleep I can in that room, so if I have to nap during the day I pick another room.

3)         If you’re lying there wide awake – get up and do something.  Having said this, if I’m in the tired but can’t fall asleep stage I will often stay in bed anyway.  I use this time to drift off and daydream (or night dream?) as I feel this also benefits you.  But if I’m wide awake I’ll leave the room and read.  (Although I’ll often go on the computer which wakes me up more, so try not to do that!)

4)         Turn the clock away from you.  There is nothing worse than being unable to sleep, and watching the hours tick away.  If you don’t know what time it is, I feel you don’t get into that oh god I must sleep panic so easily.

5)         And final tip if you’re hardcore is to try and get a sleep routine.  This one I believe would work, but I find it too hard to stick to.  I find if I get up early when I don’t have something to do – I fall asleep against my will.

Credit to nioanto

Credit to nioanto

Further rules on sleep hygiene can be found in this article here by Amber Merton.

Oh, Bright New Day – We’re Movin’ Away!

Oh, Bright New Day – We’re Movin’ Away!

I haven’t updated in forever.  There is a reason for this: I moved house!

We have desperately been searching for quite some time – half looking for a couple of years, and properly trying for a year.

We had a battle with the council who puts everyone into ‘bands’ and were banding me too low for my medical needs.   This was detailed in the post When Those Who Are Meant To Help Do Not.  We finally got the right banding – but it was still totally impossible to get the right housing for me, as they all went to downsizing their properties.

Then I was awarded Disability Living Allowance, written about in the post And the results are in…, and became entitled to claim Working Tax Credit – which went my income went from pitiful to being able to contribute to the rent.

See, the thing is we really wanted a bungalow.  I struggle with the stairs, so wanted everything on the group floor, but the thing with Fibromyalgia that doesn’t get mentioned so often is trouble with noises.  It’s not all the time, but it comes over in waves and it feels like a drum playing directly on your brain, and your pain levels shoot up in response.  It overwhelms you, and you can’t concentrate on anything but the noise, and the panic rises until it stops.  So, we felt a bungalow would be good having been cursed with noisy neighbours previously.

But bungalow rental costs a lot more than a house or flat, so it was a distant dream until I could contribute.  Our ideal place was two bedrooms – with another room of some kind.  A box room, a dining room – something.  And then this place came up.  A two-bedroom bungalow with a conservatory.

We were the first people to see it (which you have to be with a bungalow) and we took it on the spot.  The living room could fit about four of my previous living rooms in.  I have this beautiful space in the conservatory for crafting, and computer work.  The bedrooms and kitchen are a little small, but the rest outweighed that.  There is a lovely enclosed garden for my cat, as well.

What I didn’t bank on was how much moving would take it out of me, for days all I could manage was a shower and then sitting on the sofa for the rest of the day.  But we are slowly getting there with the unpacking, and yesterday I put together my craft room!

My final worry is that after a year the landlord will want to sell it, but here’s hoping to happy times here.

My garden - own photo

My garden – own photo

And the results are in…

And the results are in…

Finally after years of stress, struggling and tears I’ve been awarded Disability Living Allowance.  Both Care and Mobility, at Higher Rate Indefinitely.

They sent the confirmation six working days after I saw the doctor – which isn’t long at all, although it felt like an eternity.

I can’t explain what a difference it will make.  I now become entitled to Working Tax Credit, free prescriptions and dental care (because of the WTC), can get a motability car or free car tax.  Overnight my income more than doubled, as I was living off 16 hours a week at minimum wage.

I will be able to afford to pay for the treatment I need, and help pay for a cleaner to help mum out as she has to look after the whole house and care for me.  And I can put towards to rent to get us a bungalow – something we have been struggling with the council for years with.  A bungalow would allow me to be able to access my own room, access the toilet and have parking outside the house – rather than down the street.

So to those out there still battling the system – please don’t give up.  It took me three claims, two tribunals and two medicals – but I got there in the end.

I do kind of want to send my award to the head of the second tribunal who said I was contriving my conditions/help I need, and to the first GP who did my medical who said there was nothing wrong with me with a note to them attached  – you can imagine what that would say, but a hint is that it’s two words long.

I now have a pile of consultant’s reports telling them they were totally wrong, and an indefinite award in response.

Credit to Steffen Zelzer at http://www.flickr.com/photos/67721855@N06/

Credit to Steffen Zelzer at http://www.flickr.com/photos/67721855@N06/

It’s a fantastic feeling.

When those who are meant to help do not

When those who are meant to help do not

My house is completely unsuitable.  For a start it has very steep unadaptable stairs that I struggle to get up on good days, and not at all on bad, it has large steps at the front and back that my wheelchair can’t get up (and it needs to come in to be charged), the parking is quite far up the road which is very much a struggle, the rooms aren’t big enough to have the equipment I need to help me, and the road has the highest pollution in Colchester – which I’m allergic to.Our local council housing works on the system of ‘bands’.  Everyone is put into bands according to need with A being the highest, going down to E.  There are all kinds of categories that move people up bands, such as overcrowding, being homeless, fleeing from domestic violence, or medical needs.  Band C covers people for ‘minor medical need’ and band B for ‘major medical need’ and A for ‘severe medical need.’

We were originally in band D, and put in a medical claim, that moved us to C.  Sadly, band Cs have pretty much no hope at all of ever getting a property, so we put in a second medical claim.  In the meantime I had accumulated a stack of medical evidence, and shiny new diagnoses, and had become a wheelchair user.

One of the symptoms of my conditions is that I find noise very difficult, as it increases my pain.  There is a scientific reason for this – it’s due to sensory overload, so we thought it would be really nice to have a bungalow, than a flat where there is a much greater chance of noise.

So we put in for another medical claim – with piles of evidence, and it again came back at a band C, but saying we could bid on bungalows.  That’s about as useful as a chocolate teapot – as you will never, ever, ever get a bungalow on a C.

The difficult part in all of this is how much we can kick up a fuss.  I have strong work and family ties to the housing department making the decisions.  So I  know the people involved, which makes it a little awkward to say what the bloody hell kind of decision is this?  When family members did ask questions, she got quite vague responses, as they obviously felt they did not need to respond to a member of staff in the same manner as a member of the public.

We were recommended to speak to the Housing Portfolio Holder, a councillor, and we asked if he would act as an intermediary to ask the questions we wanted answering, in order to form an appeal letter.

At first he seemed amenable, and asked a couple of questions on our behalf, allowing us to ask him, then rewriting them and sending them without our name onto the council.  But then he got the gist of a question wrong, and when politely corrected sent back this charming response:

“I am afraid that I do not see why you cannot ask this question yourself and, therefore am not prepared to continue to act as an intermediary. It strikes me that going to appeal at this stage is both unnecessary and expensive.”

I am quite offended by this, the tone seeming very rude, and abrupt.  We had already explained why we were asking for him to act as an intermediary, and had asked him as the councillor overseeing the housing department.

Secondly, appeals don’t cost, and third – I do in fact find it entirely necessary, as I’m sure he would too if he was struggling to reach his own bedroom each night, due to the fact the council are not applying their own policy correctly.

Honestly, these people are meant to be elected to help us – yet on the first time we ever ask for a councillor to help us, get this response back.


Frustration.  Credit to Staci Becker

Frustration. Credit to Staci Beck


Twelve Nice Things You Can Do For Someone In Pain

Twelve Nice Things You Can Do For Someone In Pain

Health.com has written a list of twelve things you can do for someone in pain. It’s aimed at those with rheumatoid arthritis, but it would apply just as much to those with Fibromyalgia, as apparently those with Fibromyalgia tend to have a much higher level of pain, that’s constant in nature.

Some of the ones I like best include:

3) Slow Down. The lady describes going for walks with strangers, and they’d go at her pace, and allow her to lean on them at times.
I am very limited in walking now anyway, but back when I could walk, slowly and in pain, I was always grateful to those who slowed down for me, and allowed me to stop and rest without judgement. It’s so lovely complete strangers would do this, when I found it wouldn’t even occur to people very close to me.

4) Make a Bed. I’m lucky enough that I no longer have to do this as I have support in place, but at university when I had to change my sheets, it was something I dreaded. It left me in agony and I’d then collapse, exhausted for hours. I have since found this genius produce All Zipped Up – which simply has a zip all the way round to make changing it to so much easier. They would make excellent present. http://www.allzippedup.co.uk/

7) Learn and Believe. This would be my number one. I am so, so grateful to the people that take the time to google my conditions, and read about them. I’m very grateful to those that can even just give an approximation of what I actually have, as it’s more than 99% of my people around me can do. I really appreciate it, and it means a lot to me. It shows they care.

8) Make a Meal. Wow, yes. Again this is something so incredibly appreciated.  Cooking can be one of the hardest things to do – a mixture of standing, repetitive moments and carrying heavy items.  Chopping, peeling and slicing can be a nightmare.  I would have appreciated this so much at university, when by my final year I lived off microwave meals as I didn’t have the energy to make anything else. If you know someone in pain that lives near to you and are cooking something up anyway, save them a bit!

Credit to alex27

Credit to alex27

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