WCA Debacle

I first wrote this last Tuesday, having come back from the (failed) WCA.  I have tried to make it read "nicer" but, as my lovely grandma always used to say "You can't polish a turd".  The turdiness of the experience has, I think, influenced my writing.  Ho hum.

Anyway, it was decreed by IDS that I should have a Work Capability Assessment in relation with my latest claim for ESA.  Now, I get PHI through work (fortunately) and this means I get the sum of precisely £0 when out of the assessment phase of ESA (the first 13 weeks...heh...I made my claim initially in February 2013 and was "time limited" in February 2014), unless I get put in the WRAG or Support Group when I should get *something*.

So, I'm waiting and waiting and waiting for the brown envelope shiny white envelope, and hence the panic to set in.

First letter comes, I've got my WCA on 21 March  This is the 21st anniversary of my mum's (early...she was 46) death.  Not optimum, but OK, I'll go with it.  BUT WAIT.  The Boy has just been offered a job.  He arranges to start his new job the following Monday so he can support me at the WCA.

Then (on the Monday before the 21st) I get another letter saying "don't come on 21st" but with no new date (so hubby has missed out on a week's earnings because he only delayed starting work for a week so he could support me at my WCA.  It's also meant we've had to go nearly six weeks until he gets paid, because of the cut-off date etc.  Ho hum again).

New letter comes on the 19th, saying the appointment has been rescheduled for the 25th March, but please call beforehand if you can't manage getting out of the second floor in an emergency.  I can't.  I only do steps when I absolutely have to.  On doing a "drive by" recce of the place, there's a GIANT step to the front door, because my plan (as there's no parking nearby) was to park at the nearby shopmobility hire place and scoot my way through town.  NOPE.

So I ring up, and speak to a LOVELY lady, who agreed that it was a bit silly to have disability assessments in places that are not disabled-person-accessible, but wouldn't agree with me when I said that we all knew why that was (because if you can get there, then you're too healthy for PIP/DLA and/or are fit for work)(I must say that at this point, that if I was fit for work, I'd be doing my job.  The one I still theoretically have.  The one I still pay tax and NI on my (PHI) earnings from.  I'm not claiming benefit because I do not have a job, I am claiming benefit because I'm too ill to do my job).

My assessment is moved to the nearest centre with "step free" access.  This is 30 miles away, but only three motorway junctions, and fortunately I have a car.

So now it's time to go for my WCA.  I have my lovely friend (Judith) who comes with me to push my chair and drive if necessary and help me generally.

So, we leave Home at 1.40, and arrive at the Centre at 2.25 (for a 2.40 appointment).

Go and give my details, are told there's a slight delay, possibly half an hour.  There are two people doing assessments and they're both running a bit behind.  Think OK, well, we've got here now.  Give details for travel expense claim.  Notice ESA50 plus supporting documentation is in file.  Feel slightly relieved.  For some reason I didn't scan the ESA50 before I sent it, but I do have copies of all the supporting documentation.  At this point I realise I'm desperate for a pee (I really should speak to the doctor about the fact that I get Very Little Warning before I'm bursting and, if I was a five-year-old I'd be doing the wee dance) and we have to go out of the ATOS bit into the "main reception" because that's where the only accessible loo is.

Go for pee...great toilet.  Except that the alarm cord is wound round the hand rail and there's a sanitary towel bin in the transfer space.  One would think that a Government (or Government-esque, it's shared between ATOS and the Charity Commissioners) building would know how to lay out an accessible toilet (or not, I mean, the rest of them couldn't organise a piss-up in a brewery).

So we sit around for a bit.  The lights in the waiting area are REALLY harsh, making my teeth hurt harsh (usually only happens before a thunderstorm).  After about 20 minutes I have to change position because I'm starting to flag, so I end up lying on floor with feet on chair.  Most of the time at home I'm sitting on the sofa with my feet up (or, if there's people there who need to sit where my feet go, on a footstool).  The people waiting ahead of me get seen, and the receptionist comes out to check I'm OK and whether I want to postpone.  I don't.  I've travelled all that way and want to get it over and done with.  We get lights switched to "mostly off" so as to help me.

Sit around for a bit longer, still lying on floor.  Then get back into chair, mainly because I'm in lots of pain lying on the floor and may as well be in pain sitting up for a bit.   Other people come and go - one lady has obviously struggled to get there (with her elderly mother for support), it seemed like it was the first time she'd been out of bed in months, but when told that it would be about a half hour wait just couldn't handle it and had to go home again.  We told her on her way out that she should ask for a home assessment.  One lad comes, late for his appointment (which was due 15 minutes after mine) because his watch was wrong.  He was told that he couldn't be seen because he was late, even though his time was after mine and I was still waiting!

At 3.30, we wonder how much longer it's going to be.  I'm starting to flag seriously now.  I've got involuntary arm and leg twitches going on.  J mentions that she hasn't seen that before with me - it's happened for as long as I can remember, if I'm proper tired I twitch like a dog-chasing-bunnies-in-its-sleep crossed with Michael Flatley - but I tend to sit on my hands if I feel it going on.  It's not really the done thing to be twitching in public

At 3.45, the receptionist person comes out and says that they've just read my paperwork (by which they mean the covering letter sending in the ESA50) which requests that the appointment be recorded (as is my right).  They don't have any recording equipment.  They can either do the WCA but not record it, or they can reschedule.  I opt for rescheduling because I need the WCA recorded because of brain fog etc.  Also DIDN'T THEY READ THE BASTARD FORM BEFORE NOW?  Apparently it was because I didn't write it on the form itself, but all I put on the form itself was "please see additional information" because I didn't have the spoons to handwrite it and instead typed everything.

At this point, Judith asks whether the person due to assess me was a doctor and was told no, it would've been a "Nurse Practitioner".  As I have a neurological condition (ME) then I should, theoretically, be seen by a doctor.  What's the chances of that happening?

We left at 3.50 and headed back home, hitting rush hour on the way.  Great. Just what I needed.

I couldn't actually do anything that night (literally crashed midway through eating a kitkat), or for the days afterwards.  It's only now, a week later, that I can start to think properly, and I have only been dressed twice (both times in leggings and a t-shirt, so the nearest "outside" clothes to jammies there is) in the interim period.
I now need to get on with my complaint to my MP and ATOS.  And wait for the next appointment to come...wonder if I'll actually get a WCA on this occasion?

#BADD2013

This post is for Blogging Against Disablism Day 2013, led by the wonderful Diary of a Goldfish. 

It's the first year I've posted for this.  I don't blog very often - not because I've got nothing to say, but because by the time I've composed in my head what I want to say, I've run out of spoons to say it.  And then, when I've got the spoons to say it, I've forgotten what I want to say. 

But today I'm making a special effort and I'm actually going to blog. 

It was 20 years ago, earlier this year, that my mum finally died of emphysema.  It was three days before that anniversary that I found out that I was probably not going to suffer the same death.  My mum was deficient in a protein called Alpha 1-antitrypsin which, along with the fact that she smoked and was exposed to asbestos, meant that her lungs were buggered by her mid-40s. 

I spent my teenage years as a carer.  I would push her wheelchair, I would help her to bathe and wash her hair.  I would help her up and down the ten steps outside our house.   I would help (more than a "normal" teenager) doing the shopping etc.  I knew how to mix her drugs for the nebuliser, what the various beeps and lights meant, how to change the give sets on oxygen cylinders and frequently ran up and down stairs with them. 

I spent the months before she died visiting her in hospital every day.  I did my homework there, we ate tea together - at that point in time, the "hot" meal was at lunchtime and tea, which arrived at 4.00, was sandwiches.  Mum would order the sandwiches for me as my after school snack, and either someone would bring us a McDonalds or a pizza or I'd get a couple of jacket potatoes from the hospital canteen at about 6 ish. 

We had a small car (a Nissan Micra) and the folded wheelchair would take up most of the boot.  It really used to annoy me, particularly in supermarket car parks, when people would shout at mum for not being "properly disabled" when she was getting out of the car and waiting for me to bring the wheelchair round to her.  She could walk perfectly well, she just couldn't breathe.  But people didn't seem to realise this.  People would give her abuse because they couldn't see her disability.  When she was in the wheelchair, she became invisible - on one occasion someone actually stepped over her in a crowd, it really was "does she take sugar".  People didn't realise that they only ever saw her on a "good" day because on a bad day she literally couldn't leave the house - even a few steps left her so breathless, and the fear of not being able to get back in after doing whatever meant that "outside" was for other people most days. 

Fifteen years passed, and a series of viruses over an autumn, culminating in pneumonia at Christmas, meant that my system, which hadn't been the best (I first had bronchitis at 9 months and glandular fever before I was 3), decided that it had had enough.  I was diagnosed with ME in the spring of 2008, and fibromyalgia followed its kissing cousin in January 2011. 

I carried on working full time, then reduced to part-time, and have now been off work for two years, one month. 

If I'm walking more than a minimal distance, I need to use a wheelchair.  I chose my car because the boot is almost precisely the same size as the powerchair I borrow most of all from my local Shopmobility.  I need someone to help me bathe and wash my hair.  I need help, sometimes, to get up the stairs.  I need help doing shopping and housework and all the normal, everyday chores.  I need reminding to take my pills and make sure I eat.  Most of this falls on my husband.  He's never actually known me well; we met when I moved from a fourth floor flat to a ground floor flat. 

I get abuse in supermarket car parks because I'm not "properly disabled" because I'm not "wheelchair bound" (which, to me, implies someone is tied to their wheelchair, bondage stylee, with bungee cords).  This particularly happens when I'm arriving at the supermarket - when I've been sitting for 15 minutes or however long it's taken to drive there - but less frequently when I'm struggling back to the car having done the shopping, looking like death warmed up.  I once had someone sit on the arm-rest of my powerchair in a supermarket and start having a conversation with another shopper.  I frequently have fun with people proselytising religion in city centres (who appear to be the only people who can see through the invisibility cloak of wheelchair):

Them: "God will heal you" *thrusts leaflet into my hand*
Me: *peruses leaflet* *stands up* *does lap of wheelchair and a star jump or two* *sits back down knackered* *wheels off giggling*
Best Mate (or whoever is with me): "I want that one" *giggles*

But again, people only see me on a good day.  On a bad day, I'm stuck in my flat, the fear of not being able to get back up the stairs again keeping me here.  On a bad day, I'm in my pyjamas, laying on the sofa, TV on in the background, not really concentrating on anything. 

But I'm lucky.  I'm luckier than my mum, at least.  Why?  Because of the internet.  Because of social networking sites and fora and blogs, I know I'm not alone.  I can talk to people who are similarly restricted, either by disability or pain or whatever, from all over the world, and I don't feel alone.

And for that, and for the solidarity that days like today give, I am grateful. 

How much is Too Much

I felt fucking WONDERFUL yesterday. 

I drove himself to an interviewy thing in a place with pants parking, went into work to drop off sick note and do a happy dance with a friend who is dating a boy who she met at my wedding, and then to Boo's place to sort socks from the Odd Sock Box and stroke kittehs.  Then back home, having picked himself up from the place with the pants parking.

Today?  I can hardly stay upright. 

The total driving time was minimal.  About 30 mins there, 10 mins to the office, 5 mins to Boo's, 20 mins back to get himself and then an hour home (see which journeys started after 4.45?)

I was at the office for about an hour in total.  I talked (other than saying "hello" to random people) to three people, and was sitting down while I did it all.

I had a proper rest at Boo's house (30 mins just laying on a sofa with purring furries around me).  I sat on the floor and sorted socks into pairs (slowly) for about 10 mins.

Yesterday I was all thinking about going back to work (or at least looking into how many hours work would be willing for me to do).  Would they be OK with two hours' four times a week? 

Today?  I'm bloody glad we have leftovers and that hubby is perfectly willing and able to (a) let me lay like a big fat beached whale on the sofa doing fuck all and (b) make pizza. 

The most I've been able to concentrate for (properly concentrate, like I'd have to do at work) has been slowly increasing over time but whenever I test it - like yesterday - I realise that it's only good because I don't do it very often. 

Hmmm

What do we want?
Procrastination!
When do we want it?
Next week!

See, I was going to post every day.  And then I didn't, for one day.

And then it was harder and harder to post again. 

But today I have achieved loads and loads.

Today (with wonderful hubby) we have been to recce a new place to live *crosses fingers for the placing on the list-ness*, did the food shopping (so it is now allowed to snow, if it really must), sorted and paid for the car insurance (well, put it on the flexible friend) and had a baff and straightened my hair. 

I'm frigging knackered.

But it all needed doing - and due to procrastination - needed doing today. 

And because I procrastinated I needed to do it all in one day and then did too much. 

So I'm sitting here feeling all floopy because I know I did too much and I can't actually relax tomorrow (cos I have to go to the nurse, hence the need for a bath!) .

Fuck it. 

I shall over-do things this week.  And pay the consequences next...

Bleurgh

Today I planned to:

Dye my hair
Cook roast dinner
Phone my aunty
Finish sorting car insurance

Today I actually:

Lay on the sofa feeling like shite and watching crap TV. 

I just feel like pants.  Nothing specific.  Slight fever, but only 0.5 degrees higher than usual.  Glands in armpits are slightly up but nothing to shout about.

But I feel soooooo poorly.  I want to be a kid right now and have mum to look after me and make me a bed on the sofa with the floofy (winceyette) stripy sheets and get me lemon squash when I want it and stuff. 

Instead it was just me (hubby was at library applying for jobs and stuff) and *waaaaaaaaaaah*

I am sick of being poorly. 
I am sick of being sick.
I am sick of not being able to go to work.
I am sick of being skint. 

January 3rd.

And out I went today.

Today I planned to:

Finish sorting car insurance
Go to library
Phone aunty
Not nap

Today I actually:

Went to library (yay!)
Napped for not long enough.
Had migraine.

I'm wondering whether the migraine was brought on by the trip out.  I felt *so* poorly on the way home, not sure if it was because I did a little too much or because I'm just due a migraine.

I mean, the "too much" was driving to Morries, walking (200m max) very slowly with a couple of rests to the library, choosing my next book, paying my charges (actually, it was that!  It was paying the fees!), going back to Morries, picking up some groceries and having some food, and driving home.  I was actually wishing hubby was with me cos then I'd've made him drive home. 

But why is it that when I went to bed with my migraine *EVERYONE* was being super-noisy?  Did they know or something?

Second Day. Same as first...

Today I planned to:

Re-straighten hair
Ring docs and get appointments
Make delicious ham sandwich
Cook roast dinner.
Not have a nap.
Finish sorting car insurance.

Little bit *something-er*, little bit worse...

Today I actually:

Got phoned by docs and made appointments.  Need blood taking too (*boo hiss*)
Made stew.  Can do that sitting down - the rest of it does itself.
Made not-so-delicious ham sandwich.
Had a two hour nap

Was all smug.  Bread, dated 28 December, was still squishy.  WOO HOO (thought I).  My bread has not read the calendar.  And then I looked at it.  It was green in places.  BOO HISS.  I managed to get two slices out of the 90% full bag that wasn't.  YAY!

I knew I had two slices of the super-posh (!) thick cut breaded ham left.  I knew this because I had left two slices the other day when I had a sandwich.  I knew that Hubby didn't like this ham because we discussed it in the supermarket.  He had two packets of other cooked meats instead. 

SO WHY is there only one slice of my ham left?  There was a whole packet of his not-so-nice ham.

He was showering at the time, and I was going to give him the silent treatment when he finished but then I realised he'd probably quite like that and so I gave him a giant bollocking.  Because he is an arsehole.  And that was My Special Ham.

I'm fucked off, though, that chopping vegetables (over the course of about 90 mins cos I kept having to stop) and then making a ham & hummus sandwich tired me so much I needed a fucking nap.  I'm sleeping as much as someone on Death Row.