My wheelchair is not a prison!

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Since becoming visibly disabled in 2013, after several years in the invisible camp, I have been anxious about seeing people I used to know, and meeting new people. Not just the inevitable “what happened?” (answer: “technically nothing, I was born with this”), but the misguided sympathy I now get for being a wheelchair user. Non-disabled people tend to see the wheelchair as The Worst Thing That Could Ever Happen to someone – look at the terminology used: wheelchair-bound; stuck in a chair; confined to a wheelchair…. but they don’t think of the alternative. Before I had my electric wheelchair, I would leave the house once or twice a week, as it caused me that much pain to walk and the knock on effects weren’t worth it. Now, as long as I’m not in a bad fatigue phase, and can get what passes for “dressed” enough, I can go out multiple days in a row with only minor consequences.  Without their wheelchairs, tens of thousands of people in this country would have no access to education, work, or a life outside of their homes.
The futon is my prison, and the wheelchair is my freedom and my best friend.
I will admit to getting a bit (extra) depressed from time to time because I miss being able to do the things I used to love – dancing, climbing, scrambling, hiking (basically anything involving going up mountains), kayaking – but what people often fail to understand is that even if I didn’t need my wheelchair, or the crutches I sometimes use, I wouldn’t be able to do these things anymore anyway. The wheelchair is not the symptom of my condition or my limitations, it is the thing that helps me continue to do what I have left. So don’t aim your sympathy at my wheelchair -maybe channel it into anger at the lack of wheelchair access I and other disabled people face instead!

Six Wasted Weeks

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(CONTENT WARNING: suicidality mentioned, eating disorders, mental health, unreliable therapists, sleepless rambling)

One day I want to write a post about the housing saga and have it be a POSITIVE one. I really do. Today is not that day.
It’s been 6 weeks since the hospital’s crisis team discharged me back to my regular department. During that handover meeting, my key worker (who I was meeting for the first time) promised me she’d set up a meeting for me and the team’s social worker with the aims of helping me navigate the council’s housing system without such a catastrophic effect on my mental health. The kind that saw a return of bulimic behaviours I haven’t had in 10 years. The kind that had me shaking and sleepless and suicidal in my GP’s office on a Saturday morning three days beforehand, with no idea where else to go to try and get help, desperate to stop myself from doing anything reckless. (Actively trying to prevent the loudest 20% of your mind from taking over the anxious insecure majority is a strange feeling.)
I went home feeling like the cork was just about jammed back into the bottle, aware that it would be very dangerous to let the pressure build back up again.

So, since then I’ve waited. For six weeks. In the meantime having no luck with my other housing options (see previous post). Mental health up and down, nothing as bad as it was when the crisis team had to get involved, because of the aforementioned cork keeping my distress gently bubbling away on the inside. Literally holding out for the help I was promised.

Today I left a voicemail with my key worker, chasing this up. Two hours later the social worker called. “K has just told me about your situation….”
I had to ask her if she meant “…for the very first time”. Yep –  Just. Told. Her. 
If I hadn’t called, how long could I have been waiting for this meeting? I have a horrid feeling the answer would have been indefinitely.
If I wasn’t so tired I’d be absolutely furious. I AM absolutely furious, but the tiredness means it’s coming out as defeatist sighs and the frantic need to write this all down before I fall asleep at the laptop.
I’m pretty sad too, though. I don’t find it easy to trust people, psych professionals even less than most, and I’ve already lost a huge amount of trust in my new key worker. I know that mental health services are getting cuts all over the place, everyone’s so busy and overworked, and she probably genuinely forgot. The problem is there’s a human impact on the other side of the safety glass. My life can’t be put on hold right now – I’ve wasted 6 weeks waiting, and my provisional deadline to move is now a month away.

The social worker said she would text me some potential meeting dates. I’m not letting myself hold out much hope of that without another prompting phone call. I’m also very glad that anxiety over being forgotten about is overriding anxiety about making phone calls right now.

(Lack of) Housing progress.

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Just over two weeks ago I posted a tweet asking for help finding accessible rental accommodation in London. It was retweeted over 240 times, and garnered no replies.
This isn’t a damning verdict of community spirit – it’s a damning indictment of the lack of actually accessible properties on the rental market, and subsequently why, 6 weeks after beginning my housing search due to impending eviction, I have made exactly zero progress.

In terms of looking for private market property, I have used every website I can find. First off, I tried the site which has ostensibly taken over for the Accessible Housing Register, which currently lists a grand total of ZERO accessible properties available to rent inn the UK. So, onto the non-specialist sites. Disappointingly, NONE of them have any filters for accessibility – even dssmove.co.uk, which lists only properties which accept housing benefit – which means I have to search for listings mentioning “wheelchair” and see what comes up (usually not much). (Searching  for “accessible” will bring up red herrings as it is often used in context of local transport.)  Another method is to look for buildings with lifts, or ground floor flats only, but again there is no guarantee that this means they are wheelchair accessible. I have sent a multitude of messages to property agents about places on the market – checking either DSS allowance for those which are accessible, or wheelchair access for those which do accept DSS, or both – and the few replies I have had so far have been negative. I have, however, been signed up to numerous unsolicited mailing lists.

On the non-private rental side of things, progress has stalled. The meeting with my key worker at the Personality Disorder service, in which she promised to put me in touch with the department’s social worker to help me navigate the council, was over a month ago and since then I’ve heard nothing either by phone or post. I went to the middle-of-nowhere hell that is Enfield Council’s housing department and gave them my doctor’s note, so hopefully they won’t discard my application in the meantime. My other option is a specialist Housing Association. The only one I’ve contacted and heard back from is Habinteg- I was accepted onto their waiting list last year, when my housing situation was simply “undesirable” and not “6 weeks away from eviction deadline”. It took me a while to build up the nerve to contact them, by phone, and I was told to email them instead. That took me over a week, the anxiety of response made worse by the disinterested person on the other end of the phone. Then I got this back:

habintegreply

[Good Morning,
Thank you for your email.
As stated in our Lettings Policy, we are unable to state accurately when we shall be able to help you, but I do assure you that your application will be given full consideration when suitable vacancies occur in the future.
Any information provided to support your application will help us to determine your priority of need in terms of housing, as we allocate properties on the basis of priority of  need, applicants do not move up the list,  and we are not able to guarantee to be able to offer properties to all applicants that have been added to our listings.
Regards,]

No contact name given, not even a mention of my name. I am pretty sure I was given a template response. I’m not even sure anyone read my original email stating I was facing an eviction deadline. After another few days of fretting, I’ve sent a copy of the eviction notice but I don’t expect more than another pithy email possibly telling me that it was insufficient evidence. I’m trying not to get utterly depressed at the probable loss of what was, at the start of this anxious period of my anxious life, my best hope at being suitably housed.

Update 21/02 – I have received an email from Habinteg informing me that my emails and evidence have now been forwarded to a Housing Officer. Whether or not this is so they can tell me the same thing, I’m not sure.

As the days count down to the provisional deadline of March 31st, my mental health is piping up again. Last night I had the first seizure I’ve suffered this year, and the first in at least a few months. I’ve begun dreading the evenings and nights again, in case of the Sudden Desperate Sads which lead easily to desperation, dissociation, or worse. I’m waking up anxious, staying anxious, until it turns to depression as the day wears on. I know this is when I should be calling the PD service key worker, but the lack of contact I’ve had from them since the Crisis Week means I’m incredibly anxious about doing so.

And breathe…(for a minute)

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My PIP assessment results arrived over the weekend. I’ve been awarded higher rate care component (as before), but also higher rate mobility. This is the part that enables disabled people to lease adapted cars, if they wish. Right now neither C nor I can drive so I won’t be using it for that, but the extra money will definitely be helpful right now. It came as a massive surprise – I was expecting to get nothing for mobility again because I can walk a small amount with crutches. Is this the one time they took “safely, repeatedly, reliably” into account?
Also, amazingly, I don’t have to be reassessed until 2020. That’s almost four years of not panicking over it, unless someone reports me because they saw me standing up from my wheelchair. I don’t trust the abled public not to be vindictive arseholes almost as much as I don’t trust the DWP not to send letters to terrify us just for shits and giggles.

And that’s the good news.

The other sort-of-good news is that I filled in the Council’s homelessness help form and I “may qualify for help”. Heartening. Now I have the next form to fill out, which I’ve already done (albeit before being given an eviction date), and it’s coming up on a year since they received it and I’ve still not heard back…hmm. Hopefully they’ll let me submit another one.

In other trying-to-prevent homelessness stuff, I’ve been looking on various websites for places to rent (with housing benefit) and one thing is standing out to me: nowhere, including dssmove.co.uk, which specialises in properties which accept housing benefit, has an option to search for wheelchair accessible properties. I did find a website claiming to list all accessible properties available to rent or buy in the UK but when I checked yesterday they had precisely 0 properties that met my conditions (to rent, in UK).

Other things:

  • My therapist has left the CMHT, which would be sad if I’d heard from him at all (aside from his farewell voicemail) since September. Still no word on when BPD group sessions start, so chances are I’ll have moved out of the catchment area by the time that happens.
  • Still no joy getting a gut specialist appointment because I need to submit a stool sample first in case my obvious gastroparesis turns out to be H Pylori (hint: it isn’t). Trying to produce a stool sample with gut dysmotility and a stomach that won’t empty, at the right time of the morning to rush it down to the GP’s surgery… let’s just say it’s been *months* and it hasn’t happened. I asked my GP for a blood test instead and the hospital threw it away as they “only test stool samples”, and breath tests are only done on inpatients. Hell’s bells…
  • It’s still my job to keep calling Stanmore and finding out whether they have reopened the waiting list for the pain rehab program.
  • New GP seems fairly disinterested in helping me to find an accessible dentist or referring me to the hospital’s community dental clinic. Must push.
  • Occasional suicidal ideation, mostly when I think about being placed in temporary housing – specifically B&B/hostel type places like when I was homeless at 17. I remember the fear and the desperation, and my brain goes “better kill yourself before it happens again”. No brain, stop it.

I’m using a lot of distractions this week. Mostly Poirot.

 

Game Face

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“I don’t think I can have you stay in my flat any longer. I want you gone within three months.” And with that announcement, delivered three days after Christmas, my father broke into a smile.
“There. Now I have that off my chest we can get on with enjoying the holiday.”

And remarkably, he has. Ever since dropping that bombshell on me over breakfast on the 28th, he has been eerily pleasant as if the idea had been pressing on his mind and now he had said it out loud it was no longer there. It’s crushing me, instead.

I wish I could say I was new to being thrown out by my parents. The fact is I ended up at my dad’s when my mum threw me out in early 2014. Before that we have to go back to 2003, age 17, when I wasn’t thrown out but more “had to leave” my dad’s flat for legal reasons – two years after my mum sent me to live with him when dealing with a suicidal teenager became too much of a hassle for her. After a period of homelessness and hospitalisation, I got my own flat in 2004, and stayed a tenant of a supported housing agency until I gave it up (and all the disability benefits too) to go to university. Although I knew my mental health was precarious, I had no idea at that point that I also had a genetic disorder affecting my connective tissue, and that within 8 years I would be a wheelchair user, unable to work, and back living at my dad’s because I couldn’t get an income.

 I have no idea how long he’s wanted to throw me out for. Periodically he’s complained that I’m not making an effort to find accommodation, to which I point out that I’m still waiting to hear back from the council – that private accessible accommodation that accepts housing benefit is hard to find is a gross understatement. Truthfully, my plan was to wait until I heard back from my last PIP assessment – firstly so I knew if I would be able to afford the move, and secondly (and more importantly) so I would not have to deal with two major stressors at once. Dealing with one thing at a time is how I manage my mental health. If I try to take on too much at once, it can go very badly. But he’s forced my hand here. I have to find somewhere to live before the end of March, even if I have to take my PIP claim to appeal again.

He’s always been very territorial about his flat. Despite my living there as a teen, it was always HIS. He resented that it was to his flat that my boxes would come back to when moving to uni, moving abroad, moving back in. He resents more when I get too comfortable. And heaven forbid I let my mother in….. part of me feels that my offhand comment on Boxing Day about mum “popping round” in the new year may have been the straw that broke the camel’s back. He’s expressed discomfort with my familiarity with the flat before. The few non-fixed adaptations and equipment prescribed by the council’s occupational therapist have mostly been consigned to the conservatory. He doesn’t want a cleaner in HIS flat (despite never being there to clean it himself). The powerchair in the hall is tolerated, although the wheelchair ramp, which I negotiated long and hard for, is considered a symbol of my “settling in”. Ironic, since it’s the thing which enables me to LEAVE the flat most of the time. Essentially, I’ve always known my residence would be temporary. I’ve been reminded constantly.

So, having had two days to take it in, I’m feeling relatively calm. Enforced calmness was necessary to avoid a stress induced breakdown 4 hours from home where all my information is, in a house where the internet is unreliable at best and any supportive family had left the day before. I had my necessary cry, and my small rage, and then I put on my grown up face and asked him to please give me a letter for the council stating intention of eviction by the end of next week. With luck, common sense will overrule spite and he won’t say I have made myself “voluntarily homeless” as he’s been threatening to. I’m not sure it would stand anyway, since I’m not a tenant and there was no contract for me to break the terms of.

In the coming weeks/months I will be blogging about my search to find a new home, and probably also drawing parallels with my experiences at 17 which so far I haven’t had the guts to because of associated PTSD. This is going to bring those memories bubbling to the surface though, so writing them out will be one way to take control. 

So. Let’s find an accessible place in London that also accepts housing benefit. Game face: on.

Dirty Tricks

I came home from 12 days in Chicago to the inevitable brown envelope: my PIP assessment is on November 23rd. That’s under a month after I sent the forms off. Last time it was an 8 month wait so I’m impressed at the speed. However I learnt two somewhat disturbing things from the phone call I made afterwards:

1. In August they quietly “ended the trial” of pre-paying cabs for claimants who needed them to get to their assessment. Instead they now pre-approve claimants for reimbursement and pay them back up to two weeks after the assessment. This means that claimants who cannot afford the return trip in the first place (which would be about £60 in my case for example) are at a distinct disadvantage. Remember that “how did you get here today?” is a commonly asked question to those with reported mobility problems, and taking public transport to the assessment can count against anyone who has claimed they have problems with public transport – even if there is no other way for them to GET to the assessment!

2. I asked if I could have my assessment recorded, after last time when the assessor might as well have written down the opposite of what I said. It turns out they now ask claimants to bring their own recording equipment – good because they can’t now say “sorry we don’t have enough”, but bad because it has to be a very specific type of recording device (dual tape or CD recorder) which most people will not have or many be able to afford. They do not accept any kind of digital recording, as both parties have to have a physical copy of the recording by the end of the assessment. A quick Amazon search shows that dual tape recording devices are not readily available, and definitely not cheap. By insisting that claimants use equipment used primarily in police and court situations, Atos are ensuring that a minimal number of assessments are recorded using a method usable in an appeal. (A covert digital recording would be fine for a claimant to personally review what had happened, but that is all.) One easier to find alternative to the double-tape recorder is to procure two identical single recorders, but again for most people this will come at a cost.

 

I knew already that the odds were stacked against the claimant, but these extra costs and tricks make it extra unfair.

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!