PIP – my recurring nightmare

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Sunday night, late September

Well, it was a blissful four months without any DWP contact at all. A glorious summer devoid of this specific anxiety, along with the harsh, tinny compressed tones of the Four Seasons that inevitably accompany it (due to Vivaldi-specific PTSD, I will never listen to that piece for pleasure again). It was also a summer of drastically worsening illness, in terms of fatigue and autonomic dysfunction, but also, paradoxically, much improved mobility as my powerchair arrived in June.

Now summer is over. The brown envelope arrived the day after our return from our late holiday in Vienna. The timing couldn’t have been more symbolic.
Your PIP runs out on December 17th. Please reapply.
I knew I would be facing reassessment this year, even though I only received my first payment in January. I knew I’d only get a year. But I didn’t realise that I would have to fully reapply, not renew. This has sent me into something of a mental spiral, remembering all the stress, anxiety, extra dissociative episodes which occurred while trying to complete the original form – and realising that I will probably have to do this all over again – perhaps only to be told that I don’t qualify after all and that I will have to go through another appeals process.

It’s past 5 in the morning. I’m too anxious to sleep even though tomorrow is only the phonecall to clear up the renewal/reapplication confusion. My brain kittens figure it never hurts to panic early.

Monday evening, mid-October

The forms have arrived. It took me over a week to summon the courage to call the number and wait on hold through 40 minutes of pain and intrusive noise last month. I asked about reapplication vs renewal, and got told that whatever was on the letter I was sent, that’s what to do. So starting again it is. The deadline is November 7th, so I doubt I will be assessed in what remains of 2016 (last time I waited 7 months from sending the application to the initial assessment).
This means that I will lose almost £62 a week from December when my PIP runs out, until it  is (potentially) reinstated, as the Severe Disability Premium added onto my ESA is reliant on my getting PIP. It’s almost like they expect me to fail.

We’re doing the forms tomorrow evening, using the ones from 2014 as reference. I know that a worsened condition (both physical and mental) gives me no guarantee that I’ll get the points to reflect this. Cynically, I think it would be a miracle if I even matched last year’s results (Enhanced rate care; nothing for mobility). I had to go to a tribunal to get that. I’m not sure I can deal with another year of my life essentially put on hold so I can ensure I have the support I need. It’s a bloody grotesque system.

The email I wish I was sending.

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[CN: abusive parents, disability shaming, fat shaming, mentions of weight.]

I got an email from my mother last week, after we met for a coffee last Friday. It was the first time she had seen me using my powerchair and, looking back at the suspicious lack of comment, I guess she was saving her opinions so not to spoil the afternoon.

So the email came. Usual niceties “lovely to see you”…. then:

However, seeing you in the electric wheelchair, I can’t help feeling concerned about your well-being.

Followed by some information copied and pasted from the official EDS-UK page about how important exercise is.

I had to close my laptop before I wrote the email I wanted to reply with. It’s taken me up until now to feel like I can even write it as a cathartic exercise. I’m still not sure I’ll be able to send an actual reply without putting some sort of barb in there. Her attitude towards my newly-rediscovered mobility isn’t exactly a surprise; she has a long history of dismissive behaviour when it comes to my health, especially things which are visible. Here are a few notable examples:

  • I pulled tendons in my racket arm during a PE class when I was 13. That weekend said we could go out for a meal (a rare treat)….but only if I removed my sling.
  • A bad concussion the next year, via an accident in drama class, was dismissed with “just sleep it off”, although the school nurse had told her to take me to a doctor. I spent the weekend groggy on the sofa.
  • When I was 15 she gave my knee supports away to a friend’s daughter.

I suspect my childhood list only ends there because I stopped living with her when I was 15. I’m not even going to get started on the mental health stuff. That’s a whole other barrage of awful (“I think I’m depressed.” “Don’t be so silly.”). In adulthood it hasn’t gotten much better. I lived with her for a brief while after uni; on more than one occasion she barged into my room in the early afternoon, pulled my covers off, screamed at me to get up, to stop being such a lazy bitch. I didn’t have a diagnosis at that point, but tried to explain that it wasn’t just “being tired”. She shot back with “I’ve had two children under five, I was tired but I got up”.  In my imagination I shout “BUT YOU COULD!” after her. Now I do have a diagnosis, I’m not a “lazy bitch” anymore, at least out loud.
So here’s the email I wish I could write.

Dear Mum, 

Thank you for your email expressing concern over my newfound ability to leave the house whenever I want. However it has raised some questions for me which I hope you can answer. 

Are you embarrassed to have a disabled child? 
Because that’s how it’s coming across – that it’s fine for me to have this condition (that you never bothered learning about until you could try and use it against me like this) as long as it’s not visible to others and especially not when I’m with you.

Why the concern now? 
Was it not concerning when I was unable to leave the house for weeks at a time?
And if not, was this because at least I was being disabled out of the sight of others?

Why is my weight gain more concerning than my ability to leave the house?
(You are aware that I became exercise-intolerant long before I got the powerchair, right?)

I hope to hear from you soon. 
Love to you and [insert name of current partner],
Nina

That was far politer than I had intended. I can’t even unleash the fury on a vaguely-anonymous blog. In my head I’d made a huge list of things that were not “concerning” which had a far greater impact on me (such as when I told her my dad was physically abusive and she told me it wasn’t illegal so she couldn’t do anything) – but gain a stone and THAT’s cause for concern.

What I will write will probably be polite, terse, and contain a link to something about the detrimental effect of exercise on exercise-intolerant patients with chronic fatigue. No  questions, no accusations, maybe a “you’ve never been in my situation so stop judging me” at the worst. I wish I could send the one up there, but I’m scared of the reply. I’m embarrassed that her opinion can do this to me. Every time something like this happens I come closer to just cutting her off.

 

 

 

 

untitled (kicking against the tropes)

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I am not a good cripple
I am not brave or inspirational
I was not a courageous child
Nor injured in war

I do not bear my cross with grace and patience
My honesty is unpalatable, humour too morbid
Cousin Helen can go fuck herself
I create uncomfortable silences

There is no yearly event for me
My illness is not marketable
I am not “battling” anything
(It’s a war of attrition)

I am not a good cripple
Sympathy makes me sneer
I have to choke out thank yous
And pretend I don’t resent it

The Nearly Universal Cupholder

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Yes it’s a product review. I’m sorry. But it’s also my first one so please show leniency.

I wanted a cup-holder for my wheelchair. Sure, without both hands taken up with crutches I can hold a coffee, or put a bottle of water on my lap, but it always leads to confusion, stuff-balancing, cold legs, hot hands, or a mix of various pains and faff. I was given a cup holder meant for buggies a while ago, which needs a cylindrical frame of a certain diameter to fit.  However, my powerchair doesn’t seem to have this at all, except in places I can’t reach. Unhelpful. Most wheelchair cup-holders I could find seemed to be clamp-based which wouldn’t work on my chair either, due to the hardware under the arms.
I’d been keeping an eye on the Nearly Universal Cup Holder for a while on Amazon UK, torn between the reviews (overwhelmingly positive) and the price (£17.95 – a little prohibitive for what is essentially a piece of plastic and some Velcro) but in the end after yet another frozen-frappuccino-hand I decided to give it a go.

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Setup was pretty easy – I was concerned about the amount of hardware underneath the arm as Quickie powerchairs are wont to have, but the Velcro straps were no problem. Without using the extra foam pads provided, there was only about a 1cm give each way when gently wriggled. It’s easy to remove, if you have to squeeze into a tight gap (and I would recommend removing it if you’re not totally sure, in case of breakage).

So, all in all, I recommend this product if you have a wheelchair or powerchair with standard width arms (mine are just over 2″ across) – and if you’re not sure if it will fit your chair, the OH-4 website has a contact form so you can check before you buy (you don’t have to buy from the USA website – it’s on Amazon UK).

Happy drinking!

 

 

The buggy/bus saga rolls on….

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(Again, apologies for the formatting. I wrote this on my iPad and copied it over.)

The wheelchair vs buggy on the bus debate is continuing to roll on, with the Supreme Court ruling yet to be announced, more than two years after Doug Paulley opened his landmark case against a transport group for failing to ensure wheelchair users could use the spaces legally provided for them.

I’ve seen a lot of posts from parents this year on various platforms not only arguing
their rights, but equating them with those of the disabled people they are
keeping from accessing public transport, so I thought I would make an
annoying list of bullet points to round up my errant brain kittens on
this. Warning: will contain personal experience and also instances of
ableism.

(All points assume that neither the parent nor child is themselves
disabled. If a disabled child in a wheelchair buggy is in the
wheelchair space, well, it’s a wheelchair space, and that is a
wheelchair.)

So important it doesn’t get a number: the bleat “You wanted equality
now you have equality” holds no water here. This is not equality, not
when a non-disabled person can sit anywhere in the bus (or indeed
stand if there are no seats) but a wheelchair user only has one
option. Not equality, but it is a small step towards equity.

1.      The wheelchair space on the bus is the only place which a
wheelchair user – be it manual, transport or powered – can safely
travel. Most wheelchairs are too bulky to be able to go anywhere else
without blocking the aisle, even if they don’t move while the bus is
in motion.
2.      For most bus companies, the current rule for parents with buggies
is that they may use the wheelchair space if it is not needed by a
wheelchair user. This is clearly marked on signs in the wheelchair
bay.
3.      According to the Big Red Book (the driver’s manual for TFL buses), upon trying
to board a wheelchair user when there is already a buggy in the space,
drivers are first supposed to play the automatic announcement and, if
this doesn’t work, then go and ask the parent to please fold the buggy
so that the wheelchair user can board.
4.      The rules are apparently made to be broken: more often than not a
driver will shrug apologetically and say they have a buggy on board.
This kind of driver is unlikely to actively engage with the parent, so
I have to ask them to open the middle doors so I can speak to the
parent myself and plead with them to let me on. It’s not dignified,
but sometimes I can’t afford to wait for the next bus – hell,
sometimes this IS the next bus!
5.      Obviously this doesn’t work all the time – it’s pretty much 50% in
my personal experience, and half the time I do board (size of
wheelchair space dependent), I have to slot in next to an unfolded
buggy, in an “illegal” position. It’s okay in my powerchair, if not painful due to people continually bumping into me,  but
manual chairs are far more prone to tipping and this could be very
dangerous especially as UK buses don’t seem to have
restraints/wheelchair belts.
6.      If a buggy won’t fold at all, the driver is supposed to offer a
transfer ticket for the parent to board the next bus at no cost. I
have yet to hear a driver offer this to anyone.
7.      Should a parent flat out refuse to vacate the space, fold the
buggy, or reposition themselves so that we can unsafely share the
space (massively compounded when two or more buggies are present), a
wheelchair user will be unable to board. However, there have been
numerous times where I have used a previously unoccupied wheelchair
space and the driver has allowed a buggy on board to block me in, or
block the aisle. Yes the buggy is (often) smaller than a wheelchair,
but it smacks of double standards.
8.      The most controversial point… A baby is not a disability. Sorry.
Sure it’s inconvenient lugging a buggy around, but the right to co-opt
spaces that disabled people fought for doesn’t come with that
temporary impediment. It’s almost as if everyone has forgotten that
before disabled people literally chained their wheelchairs to buses in
protest for access, all buggies had to be folded before boarding
anyway. Years of access to a space created for disabled people has led
to entitlement and apathy. Why not join growing protests for TWO
accessible spaces on the bus, or start your own movement with other
parents? The benefits of disabled victories are not yours to reap with
impunity.
9.      A little bit of empathy goes a long way. I’ve let buses leave
without me, with buggies on board, knowing that there is another bus
not far behind. Similarly, I’ve had a mum with a baby get off a stop
early so I could board. I know there’s a striking juxtaposition
between this point and the last point. Consider point 8 aimed at those
who insist that their rights to have a giant unfoldable buggy trump
everyone else’s, and point 9 an ideal case of working stuff out in a
non ideal situation.

Left Hanging – a letter of complaint

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I have had the same few items languishing on my to-do list for 2 months. I just scored one of them off by emailing in a complaint to the CMHT exec. In a way, I think it might have been easier had it been a phone call. Anyway, I finally did it.

In March I called the home crisis team number I’d been given for emergencies. It didn’t go well….

To  whom it may concern,

I would like to make a complaint regarding the mental health trust.
I had an assessment with [specialist] in early December 2015 about the best options for therapy, how to go forward etc. At the end of our appointment he gave me some resources for self-help while waiting for therapy to begin, including a card for the CRHT (Crisis Resolution and Home Treatment Team) to use in emergencies, with the [local area] number circled on the back. The front of the card clearly states “The team will see you 24/7 in the community”.

Late on Saturday March 12th, I had a dissociative episode, and worrying that it would get worse and I would hurt myself, I called the circled number. Due to my anxiety,and especially compounded when dissociating, I am not great on the phone. The person who answered it (I can’t remember if they gave a name, but they were female) kept mishearing me or misunderstanding me, which made my dissociation worse (at one point she seemed to think I had children, and asked if they were safe). After a frustrating attempt to describe dissociative symptoms while dissociating, during which I was accused of not cooperating because I said I wasn’t feeling anything, I asked to see someone from the crisis team. It was then I learnt, for the first time, that in order to actually see one of the team, a “service user” must be pre-referred for community support, so all I could have was the phone call, which was making me feel worse. (In the end I hung up because I was scared it would push me past being able to recover that night.)

My complaint is that at no time before I needed to use the Home Treatment Team was I told that I needed to be pre-referred before I would qualify for home visits. Since a “service user” is unlikely to call a crisis number unless they are actually in acute crisis, this seems like a very risky policy. In my case, it made my acute mental health crisis worse to find that out after being further agitated by invasive questioning and allegations during the phone call.

I would appreciate it if you could reply to this message, as it is not an easy thing for me to make contact.
Yours faithfully,
Nina [Childish]
I feel rather silly complaining two months after the event, but also feel much better for having sent it. The kicker is, I have another really quite serious complaint to make about the same CMHT which I’m going to address in person at the start of next month. Two complaints already and therapy doesn’t even start until June…
[edit – sorry, no idea what’s happened with the formatting]

DWP: Disabled Woman, Persecuted.

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I had two weeks of breathing easily, knowing I had all I was entitled to.
Two weeks of planning for the future, and not fretting for it instead.
Two weeks of optimism. Two weeks of happiness.
That’s all I got.

It took me 16 months after applying to get my ESA and PIP approved, the latter through a gruelling appeals process. It took another 5 months to convince the DWP that I was eligible for Severe Disability Premium so I could afford to pay for my own care. That fight took more energy than I thought I could ever muster; it could have mentally broken anyone, even if, like me, they didn’t already have serious mental health problems.

Then on Monday I got a letter. The brown envelope.
My rate of ESA is changing in December. Dropping drastically.
A phone call cleared it up:
I am being reassessed for PIP before December 17th, which Severe Disability Premium relies upon me receiving. So they will be taking it away pre-emptively, because they’re so confident they won’t need to reinstate it when I fail to cling onto the desperately needed PIP points. (It’s not even worth noting that my illness is incurable and progressive, is it?)

And just like that, my brief respite is over. My week has been punctuated with crying fits, temper, feelings of hopelessness. I am so scared that the remaining seven months of this year will go much the same as those sixteen limbo months, full of dread, apprehension, self-loathing and despair. I would have dearly loved a longer period of time without this hanging over me.

One week ago I was starting to prepare for the accessible-home-hunt, as things in my family home (which I was only ever supposed to be in very temporarily) are deteriorating. Now I can’t do it- not if there’s a chance I’ll lose PIP, and the Severe Disablement Premium with it. If that happens I’d have to move out again and back to here and that would take more energy and self-esteem than I could ever afford to give.

The Problem With Money Policing

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When I deactivated my Ask.fm account over a year ago, in the face of multiple unpleasant messages (messages! not even questions!), I had naively assumed that the anonymous abuse would stop. I guess I forgot I had a blog.
There was the usual stuff about being fat, ugly, faking my disability yada yada, but in the blog comments there is also something quite specific to people who rely on state support to get by: money policing.

People who claim benefits are frequently subjected to scrutiny from the general public about where “their” (the taxpayer’s) money is going. Just look at comments on certain newspaper websites (or don’t, please don’t): any article about a family on benefits will have reams of comments underneath policing all aspects of their life from the flatscreen television to what they got their kids for Christmas, or their new-looking trainers, and whether the parents smoke or not. No one seems to point out that it’s more than a little difficult to get a cathode ray TV these days (never mind the fact that there’s no analog network any more), or that  these “luxury” items are often purchased on credit, or with the help of an unscrupulous doorstep loan company.  It’s not proof that benefits are too generous, it’s proof that even families in poverty want their kids to be happy on Christmas morning despite the cost, or to have the same as their more well-off peers. And the smoking? This seems to propel the commenters into an authoritarian frenzy; pre-paid “benefits cards” are a popular suggestion, redeemable only at supermarkets for “worthy” goods. Can you even imagine the exploitation possible here? Will one lucky supermarket chain will be chosen for the DWP’s partnership? What happens if a claimant is vegan, or coeliac, or doesn’t live near a supermarket, or is disabled and relies on home delivery (because I bet they wouldn’t let you use them on Ocado)? Not to mention the other things that people need aside from food: clothes, replacing broken appliances, kids’ toys….are tampons too much of a luxury? What about medicine? The bus fare TO the supermarket?

This brings us back to the problem of the public deciding what is a “worthy” use of “their” money. A cheque sent by my gran when I went away to university specifically had “not for raves” written on the back, but benefits aren’t a benevolent gift, they’re a payment that doesn’t depend on kindness but on eligibility. Once that money is paid, it belongs to the person who holds it in their account. But that doesn’t seem to stop members of the public weighing in what should and should not be done with it.
My luxury purchase (bought entirely with “taxpayers’ money”) will be a powerchair. A brand new powerchair because it’s the only one that will fit into the flat without removing the door-frame (and I’m definitely not allowed to do that). I had most of the money from a benefits backpayment but I needed help to raise the last quarter, so I set up a GoFundMe page (now closed, I met my target within 2 weeks).
It’s then that I realised someone was either on my Twitter or Facebook scrutinising it for things to complain at me about.

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Despite the accusation, I know I am not in poverty – not any more. Before January I was living well below the poverty line and had been for almost 2 years. Before I was approved for a travel concession I would exacerbate my condition by walking instead of taking the bus, so I could afford food. My own mother kicked me out because I couldn’t afford the tiny amount of rent she charged me (maybe I should have skipped the food?). I am well aware of how lucky I am to have a stable financial situation now, but the commenter seems to be shaming me for spending the money I now have.
It feels very strange to have to point out that seeing “The Manics” (twice) is costing me under 1/100th of the amount I put aside for the powerchair. That is an amount of money I can afford. I couldn’t (and still can’t) afford the target I set on the fundraiser within the time that I need the chair by. I don’t get how that’s hard to understand.
The more I catch myself justifying my spending the more I get angry with both myself for feeling like I NEED to justify it to the anonymous arseholes, and with the scrutiny that benefit claimants get over their spending in general.
Or even their future plans:

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(no I’m not writing my own abusive comments – they just seem to lack imagination)

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Heaven forbid I leave my flat and go out further than the nearest coffee shop, right? Oh, what? Coffee’s a luxury?
THIS is the problem with money policing. It starts with “no frivolities” and ends with “the bare essentials only”. Benefits don’t work that way. The DWP doesn’t calculate the bare minimum each individual needs to survive and award them not a penny more (though you could be forgiven for thinking that’s how it works). I realise I’m pretty lucky for someone in my situation. I’m not being charged for household bills, which means I have extra spending money (though I’ll happily forgo this in order to live somewhere actually accessible). I also have a part-time job under the permitted work scheme which the commenter doesn’t seem to have noticed me “regularly posting” about (which I do post about, because man I love grammar).They also haven’t noticed that before my benefits came in, after 18 months of waiting then the stress of an appeal, I didn’t do many of these things unless it was through my partners’ or friends’ generosity. Now I do have the benefits, I’m being policed over how I spend the money I am entitled to. I can’t win. This blog post might as well be called “The Pointlessness of Justifying Yourself to People”, and I might as well end by  saying, loudly:

What I spend my money on is my business and no one else’s. People who aren’t on benefits don’t have to put up with this money policing crap and neither should we. 

 

ever-decreasing circles

I told the physio I was crying so much because David Bowie died. It was mostly true but there were definitely tears of frustration in there, the same ones I’ve been sobbing out for years at the lack of help.

When I was diagnosed with Ehlers-Danlos Syndrome in the summer of 2014, the letter my consultant from UCH sent to my GP included several recommendations for referrals to help with management of this condition. Finally, I thought, I would get some help. 18 months later, I feel like I might as well have asked a brick wall.

In that letter I was given a strong recommendation to see a hand and foot specialist. My GP tells me they can’t refer anyone, even diabetics to podiatry. As for hand therapy, my physiotherapist says there is a specialist within the trust I’m having physio under but they only accept referrals from consultants. I no longer have my EDS consultant because cuts to NHS funding mean she can now only diagnose patients then discharge them back to the care of their GP. I’ve asked for a general rheumatology referral and been refused because “why would [I] need it?”. I need it because having a specialist is the only way to get help, apparently, and that should be reason enough. (Other recommended referrals were GI and Autonomic clinic, I’m hoping to get to the Autonomic clinic through my cardiologist who I already had before diagnosis.)

 

Hydrotherapy or massage therapy won’t happen in this trust. How can I get them? “Move”, said my physio, sardonically. I’ve warmed to him slightly. He replaced my lovely bright therapist a few months ago and his vaguely dour approach was quite off-putting. He keeps demanding of me what I WANT from physio and “not to get worse” isn’t a good enough answer. However, he says he has a plan and I’m inclined to trust him. He seems as frustrated at the limitations the NHS has put on treatment of chronic conditions as I am.

It’s exhausting to keep fighting the same battles. It feels like I’m going in ever-decreasing circles, chasing my tail, lost in a maze. I know I’m not the only one in this position because of cuts to health services, and it seems incredible that cuts affecting so many people could have been made.

 

In 2016 I resolve to be resolute.

I don’t generally make New Years Resolutions. Every year I just hope that it will be better than the previous year. After a mostly-hellish 2015 I don’t think that will be hard to manage.

This year, however,  I resolve to be resolute. The most useful thing I’ve learned about EDS from healthcare professionals since being diagnosed 18 months ago is if you want good care you have to fight for it yourself. If you get apathetic, you’ll slip through the net. So, in 2016, I resolve:
1. To insist to my GP that I need a rheumatologist. She has refused to refer me twice on the basis that a) I have already been diagnosed and b) I have a pain specialist and a cardiologist already. But when I go to see a GP whilst in the throes of a fatigue crash, EDS never comes into it and I am invariably sent for a pointless “generic tiredness panel” of bloodwork which all comes back fine, wastes NHS money and resources, and doesn’t teach me one bit how to manage in the future with reduced energy and ability.

2. To get an Autonomic Clinic referral, somehow. This referral was one of the things my July ’14 diagnostic letter promised me, along with a GI specialist and specialist hand and foot assessments. None of them materialised once I was discharged back to the care of my GP. When my autonomic symptoms increased drastically early in 2015 I asked for a referral again. Dizziness, blackouts, nausea, random fevers, lack of controlling one’s body temperature – these things aren’t really fun. Then I asked again in October to be told that my cardiologist should be referring me instead. My next cardiology appointment is in MAY. Time to bite the bullet and call the secretary…

3. To stick with therapy (unless it becomes deleterious to my mental health). The therapy my psychologist has recommended to me is Mentalisation. It’s shown to have better results than CBT for patients with emotional instability. What scares me is that it starts off with 6 months of group therapy. But last year I promised myself I would go to therapy, and this is it. I’ve never completed a full course of therapy in my life, except when I was actually in hospital and had no choice, but last year, when the fog lifted from the worst mental health I’d suffered in some years, I promised myself I would go back to therapy and STICK at it and try to make some progress.

Also probably to blog more. Having poor mental health or too much pain generally means that I’m not up to writing long pieces (or even short pieces). This is why Twitter is my medium of choice for writing, to be honest. I can’t get too distracted in 140 characters.