Father's Day

Father's Day is difficult for me.

My parents split up when I was three.  I don't remember Dad being at home at all - all of my "dad" memories are after he left, after he moved in with mum's younger sister.

In fact, I can only think of a couple of nice memories of my dad - including the time we pretended to do Torvill & Dean's Bolero with me on roller skates, in his front room, and the time at my mum's funeral when I got literally the only hug I ever remember him giving me.

Most of my "go to" Dad memories are of him either being distant, or not there at all, or putting other people ahead of me.

I was 5.  I had measles.  I wanted my Daddy - I cried for him for two days, apparently.  He turned up *eventually*.  According to my mum, I then pretended to be asleep when he visited.

I was 14.  I was in the orchestra for the school's performance of The Mikado.  Dad was invited but (even though the show was on for four or five nights) couldn't make it.  I can't remember him EVER coming to a school "thing".

I was 19.  I thought it was time to face my demons - which involved telling my Dad and step-mum (mum's younger sister) that I had been repeatedly sexually assaulted between the ages of 10 and 13 by step-mum's son (my cousin/step-brother).  Did he believe me?  No.  Because cousin/step-bro said he didn't do it.

I was 23.  I'd just been beaten up by my brother (not dad's son).  Dad lived a ten minute walk away.  It took him three days to come and see me - and then it was only to tell me that I should drop the charges against my brother.  I didn't.

Later that same year, I had decided that I wanted to get to know my dad as an adult (yeah, I'd obviously been watching too much Jerry Springer or Jezza Kyle!).  I spoke to him, telling him this, only to get back "The worst mistake I ever made was marrying your mother...and then YOU came along".

And now he has alzheimers and I'm conflicted. The shell of the person looks like my dad, but it's not my dad.  Because my dad is an arsehole.  A toxic, nasty person.

WCA...take 2

OK, so after what seemed like a zillion letters, I've finally had my WCA for ESA.  It was annoying having so many, because I'd get an appointment date through, contact Judith to see if she could come with me (and, at times, she would change her plans so she could), only to get another letter within a couple of days with a different date/time on.

It couldn't have been more different from the first one, blogged about here.  I was the first appointment of the afternoon session, so was seen relatively close to my appointment time.  Not "on time", but within ten minutes.

Again, Judith came with me - I really don't know what I would do without her in my life <3 - and, again, I wore my "I'm the one the Daily Mail warned you about" T-shirt.

So, we follow the nice lady into the room.  If I was a wheelchair user on my own, I would've struggled getting through the heavy (fire?) doors - especially at the end of the appointment when we were finding our own way back out of the building.

She introduced herself (first name only) and asked me to confirm that I still wanted the appointment recorded.  Bearing in mind I'd had a phone call not three hours earlier asking me if I was still going and still wanted recording, and confirming that they had recording equipment available, I did.  Not changing my mind on this one, sorry folks.  She then asked if she could ask me a few questions before she got going properly, because my form was so detailed (thanks to Benefits and Work!).

No problem, says I, and answers the questions - basic ones about my current medication, what's wrong with me, whether I always use a wheelchair, how often I dislocate and subluxate, how my mental health is (because I have the joy of both mental health issues and physical disabilities).  I give her the most recent reports from my work's Occupational Health doctor, and confirm that if I was well enough to work, I would be going to my job that is still, theoretically at least, there for me to do.

She then leaves the room to make a phone call to her supervisor.  She's gone about five or ten minutes, and comes back saying she doesn't need to do the full assessment, she thinks she's got everything and that the DWP will be in touch.

At this point, I ask what her qualification is - she confirms she's a nurse, and I ask for her surname and  NMC number.  She gets defensive, saying she doesn't know it off the top of her head, and why do I want it - I confirm it's nothing nefarious, just for my records.  She confirms I can get it from the person at reception.

So we ask the person at reception, who can't find it and has to leave the reception area to get it.  She comes back with it on a post-it note, which is now stuck to my appointment letter.

We were in the assessment room for no more than 20 minutes.    Now just got to wait to see what she's decided...

Voting...or why I'm craving fish & chips

I voted today.  There was no chance that I wasn't going to.  I've never missed an election yet; I first voted in a local council election in 1995 and have put my X in the box every time I've been invited to since.  I've voted in Parish Council elections, Local Council (city and county) elections, General elections and European elections.  I've voted by post and in person, and I've proxied for other people.

Voting is very important to me.  I was brought up knowing that my gran's mum was quite *ahem* strident about her views regarding the subjugations of women.  Annie Evans was a publican.  Annie Evans thought that if she was good enough to serve in a bar, she was good enough to drink in one, and woe betide the man who tried to tell her otherwise.

When I was younger, after we'd moved in with Gran (when I was 8), there were three generations of women in our house.  And on polling day, we'd all go together (even though I was too young to vote) to the polling station and mum and gran would do their bit, and then we'd go for fish and chips.

When I was slightly older, when it was just me and gran, we still went together.  And then came the year when I *was* old enough.  I was SO PROUD to have my polling card, and get given the ballot paper, and put my X in the box for my candidate.  I was participating in the democratic process!  And then we had fish and chips.

And then I moved out, and Gran moved into a sheltered flat.  On polling day, I went and cast my vote, and then went and walked with Gran to do hers.  And then we had fish and chips.

Time went by.  Gran moved into a home.  The first polling day she was there, I went after work (having voted on the way), and pushed her down the road in her wheelchair to the polling station.  And then we had fish and chips.

More time went by, more votes, more fish and chips.  Gran's not here any more, but I still think of her every time I put an "X" in a box.

Hopefully one day I'll have kids and grandkids of my own.  And I shall tell them of my mum, and my gran, and my great gran, and we shall go and vote.  And we'll follow it up with fish and chips.

ME Awareness Day

Today I had Plans.

Not big plans.  Just plans.

I had planned to get up, prepare a shepherds pie for dinner tonight, go to the library and return some books, have a shower and write a blog post.

I got up, about four hours later than I'd imagined I would, but I just wasn't able to get out of bed when I wanted to.

I didn't have the spoons or brain power to cook straight away so I flopped onto the sofa and watched the last episode of The Crimson Field.  I can't remember what happened so I'm going to have to get it back from the Sky+ deleted bin.

I prepped the base of the shepherds pie and the veggies to go with it (sitting on a stool in the kitchen, listening to Steve Wright) and then didn't have the spoons to do anything else.  Including eat the majority of the sandwich I made.

I'm about to go for the shower now - I feel safer doing it when someone else is here (hubs is home from work now) if I'm really spoony, even though it's a walk-in shower I still worry about falling and not being able to get up or being stuck with shampoo in my hair and no energy to get it out etc.

Library will have to wait until another day; thank goodness for online renewal facility.

So...ME Awareness Day.  Yup, I'm aware of my ME, and really wish I wasn't...

HELP!

I need somebody
HELP!
Not just anybody
HELP! 
You know I need someone
HEEEEELLLLLP!

Just a little earworm to start this post, which is for Blogging Against Disablism Day 2014.



I'm a very independent person.  This is partly because I have always had to be, what with growing up with a disabled single parent (although there was lots of wider family support, at home it was Mum - who had COPD, Gran - who was a pensioner (she was 81 the year I was 18), and teenage me).  This meant that a lot of my time was spent doing stuff that teenagers don't tend to do, like carting oxygen cylinders in and out of houses and up and down stairs, helping my mum wash her hair and emptying the "commode" (bucket in the cupboard under the stairs) when necessary, doing the food shopping.  And then mum died when I was 16, so it was just me and Gran, and we just plodded along doing what needed doing between ourselves.

I've worked since I was 14.  This has never really been out of choice - in my family, you worked when you got to 14 (for Dad, in his greengrocer's shops), or you didn't have any money for nice things - but more out of this real desire for, well, food and shelter and stuff.  I've never (until recently) been able to ring anyone to say "I'm in a financial pit, help me out of it".  And more to the point, I've never wanted to.  I'm too damn proud.  I'm a bit like a swan, I put out this external image of always being in control, always coping, looking good swimming along the river, whereas underneath I'm paddling like hell just to keep myself from drowning.  And I've been in the "nearly drowning" position for...oooh, almost twenty years*.  But I've managed.  I've coped.  Because the alternative is "not coping" and that's not really much of an alternative.

However, recently, my various disabilities (ME, Fibromyalgia, and recently diagnosed** EDS as well as mental health issues that, while stable at the moment, have been really quite severe at times) have meant that I have had to learn to accept help from other people, and this has been REALLY HARD.  It's hard to go to someone and say "I can't do this by myself" - that's always been the same as failing, to me.  It's also hard, when someone is helping me, to let them do it, and not take over and do it myself.

Case in point: The lovely Monrow.  I met her at work a few years ago, and over time, she's become one of my "spare mums".  I can go to her when I need a hug, when I need someone to give me a kick up the bum, when I just need an "adult" to talk to.  She also understands chronic and fluctuating illness, having daughters with ME and family members with mental health problems.  Plus, she's just generally lovely.  So, when The Boy managed to get a job recently (*happy dance*) and I was wondering what I was going to do in terms of having someone to help me do the housework etc (because the other option was Himself going to work full time and then coming home and doing all the cooking and cleaning etc) and Monrow offered to come over to me once a week to do the stuff I couldn't do.  We agreed that she would do my washing up, clean the kitchen and bathroom, do the vacuuming and mopping, and whatever else I needed.  We've arranged it so that the food shopping gets delivered while she's here so she can help me put it away.

This works well for The Boy too, because he gets a nice clean and tidy flat, a not-entirely-spoonless*** wife, and it's someone I know and trust rather than a random cleaner.  I'm also comfortable enough with her that if I need to have a shower and something happens (I have a walk-in shower but this doesn't mean that things don't dislocate randomly; I don't shower when I'm on my own in the flat in case I fall and can't get up) then I wouldn't mind flashing her my girl-bits.

So, she turns up every week, we have a chat and a cup of tea, and she gets on with doing my stuff.  On any other day, I can sit/lie/be on the sofa all day, with the TV or radio on in the background (because of my tinnitus I can't handle silence), sometimes pottering around the internet, at other times snoozing, or reading, or just "being".  So why is it that on this day - even if I don't have enough spoons to get dressed - I can't do the same?

In advance of this post, I've been thinking about why this is.  Why is it when I'm on my own, I can do nothing, but when someone is here, I need to be doing "something", even if the only reason that that person is here is because I'm not able to do "something" by myself and they're willing to help me?  And I think I've worked that out. It's because I don't want to be seen as lazy.

Now, I will say that I'm lazy; I've always been lazy, it's not a new thing.  But, actually, it's not really laziness.  I'm just a super-efficient super-procrastinator.  If there's an easy way of doing something or a hard way, I'll do it the easy way; and there's no point doing something today if I can put it off to the last minute.  I've tried to not procrastinate, but it's just not me.

So why is it that now I don't want other people to see me as lazy?  The only thing that's different about me now versus me of, say, five years ago (apart from the husband, the weight (4 stone down) and the hairstyle) is that I'm not working**** due to my disability.

And it's got to be disablism - plus the current climate of "everyone on benefits/not working"***** is a scrounger - that means that I don't want people to see me doing nothing.


And that needs to change.


*Is it coincidence that this is almost exactly the same amount of time that I've been mum-less?  I don't think so

**I had repeated subluxations of my knees, particularly, when I was a teenager, to the point that I ended up having an arthroscopy when I was 16.  I didn't know the word "subluxation" existed until recently, but I would be at A&E probably twice a month with a knee that had "popped and locked" - my medical notes show that I was "markedly hypermobile" but that was classed as a good thing because I did LOTS of gymnastics and ballet.  I do wonder how different things would have been if (a) I hadn't done so much sport and (b) I got an EDS diagnosis back then (I also have weird teeth and strange eyes).

***I sometimes am entirely spoonless but it won't be related to my having almost killed myself doing housework.

****I still, theoretically at least, have my job.  My employers are keeping my position open and I'm being paid PHI (through an insurance company - yay for getting a job at the height of the boom!) which works out about half of my FTE salary.  If I could press a magic button and be well tomorrow, I'd be back at work like a shot.  I miss working; I miss the social side, I miss using my brain, I miss everything - even whinging lawyers who don't know what they want.

*****I don't receive ESA because of my PHI - I was on contribution based but (a) that's time-limited to a year and I'm still waiting for my assessment (it is 14.5 months since I claimed ESA) and (b) it's reduced to nil anyway because the PHI is classed as "pension income".  I also still pay income tax and NI on it, as it's paid through my employer's payroll.  I do get DLA, but I received this (at the same rate as I get now) when I managed to work full time (nearly killing myself in the process).

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.