Housing Doldrums – when is progress not actually progress?

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In May, 28 months after first applying to the council as needing housing rather urgently, I was accepted onto their Homefinders scheme. This is where private landlords list their properties and us lucky property seekers can then bid for the right to rent them. Applicants are placed in the queue based on their assessed needs and urgency to move.

So far so simple.

Except not. In March I found out I had been placed in Housing Group 3 – extra health and wellbeing needs – which sounded accurate on the surface, until I learned that Group 5 was the group for those who need wheelchair accessible properties. My advocate and I queried this, as I rarely go anywhere without my powerchair and absolutely need it for independent living, but were told that Group 5 was only for wheelchair users that need to use their wheelchairs inside their homes as well as outside. Fair, I do not need to do that at this point as long as I can have reasonable adaptations made. But this left us with an issue – does Group 3 ever get offered wheelchair accessible properties? We asked the council multiple times in emails, going as far as to request a face to face meeting so I could get a straight answer, but no joy. We were also told that there were many other applicants in the group, and my chances of getting anything via the council were so slim that I should continue to look privately or consider a low cost homeowners scheme (hello, where is the bank that will give a mortgage to someone existing solely on disability benefits?).

So as well as frustrating myself to tears looking through property sites for accessible and affordable flats (as I have been doing since early 2017), since May I’ve been logging onto the Homefinders site weekly to see what’s listed as available for me to bid on. I’ve never seen more than 4 available in my strict category (1 occupant, 1 bedroom) in one week, and to answer my own question to the council it seems that wheelchair accessible properties offered to Group 3 are sparse. I’ve seen one so far, and it was on the ninth floor of a tower block far enough removed from public transport that even the site listed it as such. Even yesterday, a friend alerted me to a property listed that had a “roll in shower” so must be wheelchair friendly? Nope – third floor, no lift. We’re going to try and push again for that data on accessible properties, or a face to face meeting.

What else in the meantime? I’ve applied to two different specialist housing organisations in the last couple of weeks, although I’ve not even had an acknowledgment of application from either of them, and since posting a desperate tweet to find any other links/HAs/charities/flats for rent I’ve got a couple more to try.

It’s hard keeping my head above water right now. I can be in a perfectly good mood then think too much about housing and start going under. I tried to access private therapy to deal with the trauma around housing and homelessness from my previous experiences, but something got in the way – lack of wheelchair accessible therapists. The irony is not lost on me. I’m even considering reapplying to my local CMHT for help, but I’m not sure I’ll be accepted since in November they kicked me off the therapy program I was on because my housing issues were monopolising my thoughts and causing more acute mental health issues, distracting from the longstanding ones the program was designed for. If I don’t laugh I’ll scream

And that’s where I’m at now. I know I’ve been crap at updating this, it’s hard to pull the brainkittens together to write something longer than a tweet – see last post – but I’m trying to write it out more. It makes me feel less lost and confused, writing it all down as a record of what happened too. I’ll do a medical update one at some point, but it seems less urgent.

Thanks to everyone who’s retweeted my plea – so far 674 of you! Please keep it going, any advice, any ideas are appreciated. Even if it doesn’t get me a property to rent, I hope that it wakes people up to the appalling lack of wheelchair accessible properties in this country.

the intersection

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I’ve spent the last few years insisting that my worsening physical health isn’t impacting on my mental health; that maybe occasionally my brain will mistake not leaving the house for days at a time for depression and slump accordingly; that I don’t grieve for the abilities I’ve lost. I find denial a powerful coping mechanism, but one that only lasts so long.

It’s not that I never get a bit sad about losing my physical abilities. The other night I dreamt I had learned how to click my heels in midair (apparently it was to do with having the right – possibly magic – shoes), and woke up feeling rather wistful, despite not having been to a dance lesson in years . Social media constantly throws up reminders for me of what I used to be able to do – climb a mountain, walk a marathon, stay out all night, walk to the end of the road unaided… I tend to view these prior accomplishments without sorrow; I’m just pleased that I did them while I was still able to. Of course, if I’d known that everything would go so, so wrong before I hit 30, then I like to think I would have done a lot more. For five years in my adolescence I lived on a lake, and can count the number of times I took the canoe out on my fingers. As much as I wish I could go back in time and shake up my sulky 13 year old self into going outside on a bright spring day, instead of spending the day lounging on the sofa with a book, I know that it won’t change the now. At least I have done things, I think. At least I’ve been to places that I couldn’t manage now. I just wish I’d done a little bit more.

But it’s not the physical loss I struggle with. Whether as a result of fatigue, brain fog, lack of ADHD meds or a combination of the three, my ability to sit down and write something longer and more convoluted than a tweet has all but disappeared over the last year. I feel like I’ve hardly done anything in the realm of activism or awareness so far this year – which is slightly unfair as I did write one article and collaborate on another, but it’s hardly the height of productivity. Almost six months characterised by notebook pages and blog drafts with ideas, starts, first paragraphs – and no energy or drive to continue with them.

I have always put more value in my intellectual abilities than my physical ones. As a clumsy, easily-injured child it made sense. Not that I was particularly good at school either. My parents pushed me to work hard (I didn’t) and get good grades (ditto) and I’d throw myself into things that I liked and do the bare minimum with those I didn’t. This is what’s so distressing – I can’t throw myself into my passions as readily as I used to be able to. Thinking through fog I can get a few sentences down, then when I come back to it a few days later or when I’m next able to, the flow is gone. Writing my way through chronic illness and disability has been an invaluable outlet in the last 5 years, and has led to some amazing opportunities, and without it I feel utterly useless, my power centre taken away, my saving grace gone. My self worth is so tied up in my productivity, even my adjusted-for-illness productivity that without having something to be working on, no matter how small, I feel like I have no purpose.

The fog has lifted slightly today, so I’m taking the opportunity to get this down before I lose my train of thought or get too tired. I need to write more, I know this, and write more without worrying about form, readability, coherence. The important thing is that I do write my experiences down, not how well written they are. It’s another mental block to get past.

 

Nilaqua Towel-Off Shampoo

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Yes it’s product review time!!

(Note: I have not been paid for this review nor has the product been gifted to me in exchange for a review.)

One of the more unpleasant and less Instagram-friendly aspects of chronic illness is the inability to deal with one’s own personal hygiene. I’ve talked about this before (see: A Tale of Two Indignities),  but not about the practical alternatives when you can’t bathe or shower for several days. Baby wipes and sink washes deal with the body, but I’ve always found spray can dry shampoo to last a few hours only, and leave a tell tale white residue on my already-grey-streaked hair. So, on a recommendation from a friend, I decided to investigate Nilaqua “waterless” shampoo.

It sat under my sink for a few weeks until the opportunity arose not in the form of a free afternoon with enough spoons for experimenting, but a genuine “my hair needs to look less gross” emergency – my birthday lunch with my mum and her partner. So with less than two hours until our mercifully-local meal, I draped my towel around my shoulders like Batman in a very cheap beauty salon and pulled the bottle out.

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Hair duly covered – patchiness model’s own

The first step was to cover my hair in it, naturally. It’s quite strange how we’re conditioned to expect shampoos and shower gels to foam up when we rub them in, but they don’t have to do this to be effective – there is no bubble/cleaning power ratio. I did feel like I was using quite a lot of the product, but it covered my hair evenly and didn’t drip. After this the instructions were to massage the product into my scalp to soak up all the excess oils. And then the towelling began.

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To be fair to Nilaqua, it literally says “towel-off shampoo” on the bottle, but this is the part of the process that I felt was distinctly chronic fatigue unfriendly. As a rule, once I’ve washed my hair it goes up into a microfibre turban to dry naturally (a wavy/lazy version of the curly girl method), and hair dryers make me ache too much. So, does it turn out, semi-vigorously towelling my hair for 20+ minutes. Still, I can’t say I wasn’t warned. So I towelled, and panicked about the clock ticking down, and towelled some more and felt like I wasn’t getting all of the product out properly due to rapid energy loss. A few more concerted bursts of towelling, then I dropped the towel, thankful that I’d had a haircut 6 weeks beforehand, and hoped for the best.

After towelling, I got dressed and ran a bristle brush through my hair. What was my first impression? Big. There was almost certainly some of the stuff left in my hair and it was having quite an 80s power hair effect. Still, my hair did look clean. It certainly smelled better, and my scalp didn’t have that horrible gritty feel it tends to get after too long without a wash.

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After styling with a little spray wax it looked more like I usually wear it. Lunch was successful, and my mum had no idea I’d gone for 6 days without a proper wash. Look society, I’m tricking you!!

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Sadly no shampoo, can fix my wild white hair patch.

I would have given it a 3/5 at this point. Easy to apply, no mess, but difficult to remove without knackering myself out (within the context that this is a review for disability assistance products), to the point where I couldn’t remove it all myself.

But then my hair and scalp still looked and felt clean and lovely at bedtime:

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If not characteristically messy. Some things shampoo can’t change.

In fact, two days later it still felt like I’d just washed my hair.

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With that impressive longevity in mind, I boosted the overall score to 4/5. It only lost marks because of the energy it took to towel it off. Of course if someone else had been around to help me with that it might have been a different story, but if that had been the case I wouldn’t have had to use a “waterless shampoo”! This will in all likelihood remain under the sink for those occasions when my fatigue levels and events calendar clash, unless there is someone else around to wield the towel!

You can buy Nilaqua towel-off shampoo from Boots or Amazon, and they also do a version in “shower cap” form as well as a waterless body wash.

The 10 Year Challenge – dealing with change.

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For the last couple of weeks the 10 Year Challenge has been sweeping social media, and so far I’ve abstained. It’s not that I don’t like my face now, or my body; I’m happy with those changes. In 10 years I’ve gained a fair amount of weight but love my curves and softness. My hair is still usually short, although a bit thinner and with a lot of white hairs dispersed throughout. I’ve learnt how to use brow pencil. I’ve still not learnt how to pose without looking silly. My personal style is more defined (and still not grown up). But I’ve not been able to post any flashback pictures yet because this challenge holds more poignancy for me than I can summarise in a side-by-side comparison.

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This is me in Utrecht in August 2009, on my last day of a month Interrailing on the continent. Four countries, countless cities, stations, hostels, new friends, and one 13kg backpack. Of course, Ehlers-Danlos Syndrome is present from birth, but it would be another few years before my symptoms worsened and became unbearable, and I sought diagnosis. At this point I just knew I was “tireder” than other people, and that my hips and shoulders could come out of place if I wasn’t careful. Pain kept me awake a few nights on this trip, and I had one day near the end when I fainted and had to stay in bed. But I managed four weeks of varying beds in hostels and stranger’s floors when couch-surfing. I walked miles every day. I carried that monster of a backpack. I got a concussion and cured it with gin. It is an experience that I have absolutely no regrets over, but that doesn’t make it any less bittersweet to look back on.

When this picture was taken I was about to start my second year of university. I didn’t know what I wanted to do with my degree yet. Teaching ESOL was high on my list, and I bought books about countries like Cambodia, Laos, Bhutan, in the idea of maybe going there after I finished university to teach for a bit. It didn’t happen. After graduation I moved back to London and stayed, and as my health got worse and worse my world became smaller and smaller. Part of this is due to the access issues facing all wheelchair users. When I went on that trip in 2009, I booked my flights, my Interrail ticket,  the first hostel and the last one – as well as one night in the bizarre Propellor Island hotel in Berlin. Everything else I played by ear, because I could be spontaneous, and it’s that spontaneity I miss so badly now. Even if I wasn’t too ill to attempt a month of travelling, access issues would come up constantly if I tried to repeat it. Getting to the city from the airport by the hostel’s free shuttle wouldn’t be possible. None of the hostels I stayed in were wheelchair accessible, nor the apartments of people from Couchsurfing or friends I’d made on the trip. The trains and stations weren’t all accessible (none at all in Poland) – and forget just hopping on a train without knowing the precise access details of the destination station and whether the local buses are accessible either. As for the giant backpack (his name is Hamish), I don’t know how that would work now! I’ve travelled quite a bit since becoming a wheelchair user – making up for the previous few years of being mostly stuck where I was – and research is everything. Lots and lots of research.  Spontaneity only happens within the confines of the “places I’ve been already and know to be reliably wheelchair accessible” list, and then only when I’m feeling well enough.

The person in the photograph thought they had everything ahead of them, could do literally anything with their life, and I still often find it hard to accept that so much has changed since then. This weekend I was having a small mope about this subject (which has become this blog post). “It’s so different to how I imagined my life at this point” I cried to my boyfriend. After pondering on this for a moment he replied with some words I need to remember when I feel sad about this: “Just because it’s different, it doesn’t mean it can’t be wonderful.”

 

Spoonless in the South-East

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[If you haven’t come across the Spoon Theory before, click here for a primer!]

I haven’t written since the end of April, which is far too long. I’m sorry. I really wanted to increase the amount I’m blogging (on average once a month), not neglect it again. I have multiple started/sketched out subjects in my drafts, and even more ideas I haven’t even started on.

What’s stopping me? Frankly, I’m just out of batteries. It feels like I’ve had a handful of good days so far this year. Even for me this is especially bad, and it’s only gotten worse in the last few weeks with a huge increase in pain in my neck and hips affecting my sleep. Fatigue, and brainfog, and pain. Not things that are very helpful when you’re trying to hold a train of thought together. As well as useless I feel quite anxious; writing is the one thing I still have of the “other’ me, the me that didn’t see their health washed down the plughole over the course of a few years. I’m scared that if I don’t recover some ground, I’ll have to put the blog on hiatus – and the Patreon with it (after all, people are paying for words and actions).

Not that nothing’s happened at all…. my solicitor is using my negative experiences with the bus company to teach bus drivers what not to do, and I got my Topshop fitting rooms story in the press, even if it didn’t get as much attention (and therefore positive change) as I wanted it to. I just rarely have enough energy at the moment to go beyond the absolutely necessary – which means my twice-weekly therapy is taking up pretty much all my available spoons. I’m still pretty active on Twitter in the meantime, because it’s far less taxing when I don’t have to write more than 280 characters or attempt to stay on topic.

*flops*

 

Diagnostic Curveballs

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Maybe it’s because when I have discussions about diagnoses it’s usually with other members of the chronic illness community, but I’ve been equating diagnosis with answers for a long time. I’m used to posts where people are grateful, relieved to have a diagnosis of a chronic illness. To be honest, so was I – they gave me answers to symptoms that had been plaguing me since childhood. “You have asthma”; Oh, that’s why I can’t breathe deeply without coughing. “You have Ehlers-Danlos Syndrome”; Ah, that would explain the constant pain and loose joints. “You have POTS”; Yeah, I’d figured that one out too due to the tachycardia when I stand up. But not all diagnoses are answers to puzzles, but puzzles themselves – as I am finding out.

Dear body, please stop.

2018 has been a ridiculous ride of hospitals and new things turning up so far, mostly within a 10 week period. With housing stress and overwhelming anxiety being my baseline this isn’t ideal, but I thought I was coping until a week or so ago. Being diagnosed with heart failure at 32 was a bit of a shock but the fog quickly cleared and I realised it didn’t really change anything except how I viewed my body’s need for rest and recovery (in a more sympathetic light, by the way – I struggled before with the psychological need to “shake off” the fatigue, especially when confronted with articles about other EDS patients who ran marathons or “didn’t let their condition stop them”). You can’t really argue with heart failure. Even I, who likes to argue with everything and everyone, am trying my hardest not to argue with it.

Can’t we have a one-in-one-out policy?

Then came the Central Sleep Apnea, which was more of a surprise. I did a sleep study in November and the results were revealed to me earlier this month. I guessed I had some degree of Obstructive Sleep Apnea, and was prepared to be told to lose a little weight, or to see about getting my adenoids out or something but no – it’s my brain failing to do its basic job of keeping me breathing. *facade drops slightly* Stupid body, stupid brain, why is so much going on at once? Oh well, CPAP therapy trial coming up, hopefully that will improve my fatigue by a fraction…

*MARCHING BAND INTERRUPTS TRAIN OF POSITIVITY TO DELIVER MORE TEST RESULTS*

Oh good, more unwanted news. My prolactin levels are approximately 25 times higher than they should be, which was unexpected considering the lack of symptoms (aside from the occasional uh, leaky boob). High prolactin levels can be caused by stress, a side effect of medications (notably older generation anti-psychotics), or a small brain tumour in the pituitary gland called a Prolactinoma. My GP suspects the latter due to the high levels of prolactin, and the fact I don’t take regular prolactin-increasing medications. There will be a scan soon, with an urgent request sent by my GP, then whatever treatment follows. Whatever it is, I need to get my levels down as prolactin levels that high can cause a loss of bone density which I’m already susceptible to. I’m not overly alarmed, but I am weary of my body ramping up its trickery.

And I’m annoyed. Very, very annoyed. It’s just too much now. My diagnosis list reads like someone typed “fatigue” into Google and wrote down all the causes. It’s getting to the point where I’m scared to talk openly about my health because it’s just so ridiculously hyperbolic at the moment and I don’t want to start causing eye-rolls and “oh great, Nina is talking about their health issues again” with every additional, bloody stupid, and unconnected diagnosis. It’s just more questions (“is this obscure co-morbid condition causing Central Sleep Apnea?” “is taking an anti-emetic every week or so enough to ramp up my prolactin levels?”), when what I’m used to getting from a diagnosis is answers. I feel like I need a chart on my wall like in dramas about over-involved investigative journalists, with each condition and symptom connected by coloured yarn, in order to keep track of what’s going on. And this is on top of the ever-present housing stress. No wonder I have trouble getting to sleep.

Thanks for letting me get that off my chest. Normal service will resume soon.

 

Disabled facilities are not storage spaces.

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“Disabled facilities are not storage spaces.”

You’d think the above statement would be obvious. After all, what use is a cubicle or toilet if it can’t be used for its intended purpose? Unfortunately, the answer is often found inside – where these facilities created to enable wheelchair users to try on clothes or use public conveniences are misappropriated as store cupboards.

I cannot tell you the entire range of items that can be found in accessible loos, but to give a brief picture from my own experience: mop buckets and cleaning equipment, excesses of nappy bins, unfolded baby changers, staff members’ bicycles, zimmer frames and wheelchairs belonging to other patrons, and even folded wheelchairs belonging to the venue itself. For a wheelchair user, having the space to enter and safely transfer to the toilet, let alone turn around to exit again without contorting oneself, is paramount. Having the facility stuffed with unnecessary objects and obstacles often prevents wheelchair users from being able to transfer and turn around safely, as well as from accessing the emergency pull cord (which has its own ongoing issues with being cut or tied up). In the worst case scenario, a wheelchair user may find themselves without a toilet they can use while out of the house. We shouldn’t have to pre-check that the toilets are not being used to store things before we choose where to go for supper, on top of checking all the other accessible points that are needed but sadly lacking in so many public places.

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THREE nappy bins (count ’em!) in a shop’s accessible loo, preventing the ability to turn around.

And then there are fitting rooms. What prompted this post was a visit to Topshop the other day, my local branch in the Palace Exchange, Enfield Town. The shopping centre itself is pretty good for access – it’s all on one level, all shops are level access, most shops have lifts if they have more than one floor, and there is an accessible loo that can be accessed by Radar key. I don’t normally try on clothes – it’s less exhausting for me to buy something then try it on at home and return it the next week if it doesn’t fit – but I was having a good day and wasn’t sure which size of the shirt I liked would fit me. I was pleasantly surprised that they’d thought to include a wheelchair accessible fitting room, but less pleasantly surprised by what it was being used for:

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Even the models in their adverts would struggle to squeeze into here.

The staff member monitoring the fitting rooms was very apologetic, and helped me cram my chair into a normal cubicle and pull the curtain around its sticking-out arse (yes my chair has booty). Although I managed to try on the clothes I wanted to in a very small space, I was left feeling that “sorry we’re using the accessible cubicle to store sale rails” wasn’t really good enough. What if someone came in who really needed that larger space? Someone using a larger wheelchair, or who needed someone else to assist them in trying on clothes? Not to mention access to the emergency pull cord….again.

I’ve tweeted to Topshop and haven’t had a reply yet. I’ll keep trying. This brings me onto how to address the misuses and abuses of facilities meant for disabled customers:

COMPLAIN. Complain as loudly and as publicly as you are comfortable with, in person or online. Tell your friends, get the message shared. It is shameful to misuse an accessible space like this, and the abuses of them will only stop when it becomes seen as an unacceptable thing to do. This won’t happen without public pressure from customers both disabled and non-disabled. So, next time you’re in a clothes shop with an accessible fitting room, have a look and see what it’s being used for.

In the meantime, I await a response, any response, from Topshop….

Further Adventures in Bureaucratic Incompetence.

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Will I ever share good news to do with housing? Well, one day I hope to but today is not that day. When you’re dealing with a department as shambolic, uncommunicative and Kafkaesque as the council’s housing department, you have to cross your fingers and pray that all other agencies involved are on the ball. That appears not to have happened.

This afternoon I spent 40 minutes in an airless back office that smelt of feet, waiting for the results of the Great Bureaucratic Incompetence-Off. I knew that the council had sent a form (plus a freepost envelope!) to my GP back in October – I knew this because it had been put into the system shortly before I had an appointment in November, and the GP I saw had told me her colleague would be doing it soon. I also knew that it was now five and a half months later, and I had seen zero progress as far as housing went – but also that sometimes the council needed something akin to 20,000 volts up the arse to do anything with the information they themselves had requested. However, an afternoon at the housing office is only slightly more preferable to one spent having a filling without anaesthetic, and I assumed that finding anything out from the GP’s office would be somewhat easier than dealing with staff at the housing office (you know those characters in videogames who have important things to say to you but you can’t ever work out the right thing to make them say it?). I guess in retrospect 40 minutes in an eau-de-pied office surrounded by broken blood pressure machines was better than [time doesn’t actually exist in a housing office] the alternative.

“There’s a queue, dear”, said the receptionist, when I asked her to look up the letter on the system, and see if anyone had “actioned” it (arrgh, not a verb, I refuse to accept it).
I was aware there was a queue, I had waited in it for 10 minutes, and now I was at the front of it. “Can’t you come back another time?” Mindful of the ‘aggression will not be tolerated’ rules laid out on laminated pages on the counter, I aimed for ‘snippy but polite’ and pointed out that there was always a queue and by the standards of queues I’d been in there, this was quite a mild one. Five minutes later I found myself guided to the back office by the reception manager, and left for 20 minutes or so while she tried to find out some more information. She returned holding the sheaf of printouts that the first receptionist had handed to me 20 minutes ago. No, nothing had been done with the forms since they arrived in October. For over five months I sat at home like a lemon (again!) assuming someone was doing something with the information I had given them (again!) but instead the Thing That Needed Actioning (argh!) was sitting in a to-do pile in another dimension (again!)*. She left again for a while, and came back to offer me an appointment to fill the form out tomorrow morning with, awkwardly, the same GP who told me that her colleague would be doing the form five months ago.

(*) If this sounds depressingly familiar, it’s because it is. From January til June 2017 my housing application for impending homelessness sat in an unattended inbox until my friend (who is a housing support worker, but not for my council) badgered them into finding it and starting the process. So that makes a grand total of 11 and a half months of unnecessary delay out of the 15 months since I submitted my application to the council. Should I have sat around for both delays, waiting for them to get this far without chasing anyone up? Of course not! – and that’s where the paralysing anxiety comes in, and the depression that makes me too miserable to even think about housing, and the fatigue that prevents me from being in any way useful most of my waking hours. Basically, all the things that will go on that medical form tomorrow. It took until today for me to feel okay enough to ask about the letter; it’s nearing a miracle I still have the energy to write about it after.

THIS is why I need an advocate, a support worker, a someone who can do the chasing-up and checking-in. It’s not me trying to shirk responsibility for my own endeavours, but trying to ensure that I don’t fall between the cracks again. Because I have, due to the aforementioned assortment of brain kittens and body woes. When I do speak to people about it, their assumption is often that I’m trying to weasel out of doing my own work; I’m educated, well spoken, on paper I should have my shit together. In reality, I’m holding the cracks together with jam. However, I have a vague plan: tomorrow I see the GP to do the form and at the same time I will ask if she can refer me to somewhere. If I have no luck there, I see my therapist on Thursday. If no luck again, the CAB (so, somewhere around 2019 when I’ve built myself up to it….)

I’d just really love for every step in this torturous process not to come with its own obstacles. NOTHING about the housing process so far has been anything less than frustrating. At this point, “frustrating” would be a vast improvement.

For Valentines Day I got a broken heart.

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Well, I got the answer to why my fatigue has been getting worse and worse even when my pain is manageable, I’m preserving energy by using the powerchair, and my POTS symptoms are relatively well controlled. On Valentines Day I got was a call from my cardiologist. I mentioned being so frustrated with my current level of fatigue, and that I was considering going to a private specialist. “Well, I could refer you”, he said , “but most of the patients I refer there have hypertension due to stress and fatigue due to burnout, they’re working too hard. You’re fatigued because your heart isn’t pumping effectively. Didn’t you get the letter?” (I had not gotten the letter.)
He calmly explained that they’re recently seeing this kind of cardiac fatigue in some patients, but needed to set up a research group in order to work out what’s causing it and how to treat it, if it can be treated it all. He also told me to start taking CoEnzymeQ10 at a very high dose to try and improve fatigue and retain heart function before my next appointment, when we’ll discuss more treatment options for this and the autonomic dysfunction (both very experimental areas at the moment – trust me so be so bloody niche).

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I told my friend about the CO2 problem, and she decided I was a plant. I live on photosynthesis.

The next day it got scary, as the letter arrived. It’s easier to take daunting news when it’s coming from a lovely, cheery consultant on the phone, but there’s nothing comforting or reassuring about a page of test results. I’m in heart failure which is causing abnormally high levels of CO2 in my bloodstream, as ineffective pumping action means it doesn’t leave my body at the normal rate. I’m glad I got the phone call first, because it meant the results were easier to decode and I knew I wasn’t in imminent danger because of my cardiologist’s tone, but my overall feeling throughout the day was still one of being scared and anxious, and to an extent it still is. I’ve never had to try and take in a diagnosis before like this, I’m not used to answers coming with other implications; when I was diagnosed with Ehlers-Danlos Syndrome I already knew something was wrong and finding out what it was and therefore being able to access treatment options was fantastic. Here, I didn’t know anything was wrong other than extreme fatigue, which I’d presumed was connected to the EDS/autonomic borkery; it might still be connected, we’ll see what the research turns out, although it could take literally years.

Heart failure at 32. Well, I’ve faced tougher things.

Here’s what I’ve learnt in the last day of nail-chewing and sporadic Googling:
Heart failure isn’t necessarily a death sentence, it’s a technical term for when the heart is not pumping effectively – sometimes due to thickened muscle, sometimes due to cardiomyopathy – in my case it’s still a mystery as to what’s causing it, but we know it isn’t any of the usual suspects, and we’re not expecting it to progress quickly.

I think this is going to be one of those “several stages of dealing” things. I’ve felt alienated from my body for the last couple of days, like something about it has fundamentally changed although of course all that’s really changed is what I know about it. Today I’m focussing on what I know:
I know I feel incredibly grateful that back in 2015 my local hospital’s cardiology department referred me to a specialist heart centre because they themselves didn’t know much about autonomic problems. I know I’m not panicking, because my cardiologist isn’t panicking. I know I don’t want to tell my mum. I know what’s wrong now.

ACCESS REVIEW: Victoria Palace Theatre (Hamilton) UPDATED 30/03/2018

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Let me start by assuring you that Hamilton was as astounding as the hype suggests. There is nothing to worry about in terms of the quality of the performance. However, as the theatre has just had a refurbishment, I had higher expectations of the accessibility. I’m going to break it down into sections.

Getting Tickets
I signed up to the pre-sale list as soon as it was announced. Somewhat predictably, I was unable to buy the tickets I needed online (see: the vast majority of times I’ve bought theatre or gig tickets). I was sent to a form to fill out, with assurances that I would be phoned back – with no timespan given. That was worrying to me because I have big phone anxiety, not to mention a variable sleeping pattern, and only turn my phone ringer on when I know I’ll be getting a call. Luckily they called two weeks later when I was in Starbucks playing on my phone. I got the impression that they hadn’t even decided how many wheelchair spaces to have yet.

Entrance
No complaints here. We made ourselves known to the staff who were managing the queue, and were handed over to the Access Host – and fairly impressed that they had someone who was dedicated to that job. The wheelchair-friendly entrance was around the side, no scary ramps, good sized door.

The Wheelchair Space
Here I encountered problems. The first thing I noticed was that the floor, as is common in theatre stalls near the back, was sloped downwards. While the stalls seating stood upright, my wheelchair tipped downwards to the point where I had to use the tilt-in-space function just to be sitting upright and take pressure off my hips. I’ve been to theatres with sloping floors where a sort of wedge was used to even out the angle for the wheelchair user (after all, not all wheelchairs, manual or electric, have tilt-in-space functions).

The other problem with the wheelchair space was the view. At the Victoria Palace Theatre, the only wheelchair spaces are on either side of Row T, the back row of the stalls. This would have been less of a problem, if not for the significant overhang of the circle balcony (see picture below) which meant we were often unable to see when performers were on the higher levels of the stage. When I posted the picture below on Twitter, multiple people who had also booked a wheelchair space (either side), told me that, like me, they had not been told that the wheelchair space had a restricted view when booking. But, because this is the only wheelchair space available, it seems to be take it or leave it. I did ask the Access Host if this row had the only wheelchair spaces, and she talked to someone more senior and came back with the answer that the council did a health and safety check and told them that the wheelchair space had to be at the back due to fire safety. I took this at face value at first, then remembered that at another theatre I had come in through a corridor, and was still placed halfway down the stalls section. I plan on contacting Delfont Mackintosh, who own the theatre, with my access concerns, and will hopefully be able to verify this.

HamiltonWheelchairView

Not the best of views.

 

Services
I didn’t go to the bar before the show started, but C tells me that he saw another wheelchair user there. That, and the fact that the Access Host offered to escort us to the bar before the show, makes me believe that there is an accessible route to at least one bar. Something that I would have appreciated was being brought a merchandise catalogue, which I’ve been offered in other theatres. I don’t know if there was a merchandise stand I could have accessed* (my partner, C, saw one that was down some stairs), but in any case being in a throng of people is incredibly stressful and dangerous (for them as well as me!) in a powerchair, and I’d rather order remotely to avoid that.

* Update: I have been told by someone on Twitter who has visited with a wheelchair using friend that there is indeed an accessible route to a merchandise stand.

Toilets
Probably the worst of the “accessible” features. To the theatre staff’s credit, the Access Host came with me in order to keep people to one side while I passed though (the corridor is quite narrow), but when I got to the toilet I found the most face-palm worthy of all errors – a door that opens inwards. I reckon if the door had opened outwards, I would have just about been able to get my powerchair in without it being wedged next to the toilet itself and have had enough room to safely transfer. As it was, because the door was quite wide (which would have otherwise been a good thing), even ramming my chair as close to the toilet bowl as it would go, returning tilt to a fully upright position, and moving the seat back as far forward as possible, the door wouldn’t shut. I had no choice but to leave my powerchair unattended outside, angry with the knowledge than many wheelchair users will not have that option if they need to use the loo. Maybe those who use small self-propelled chairs would be okay, but there wasn’t a lot of space to use the pull down transfer rail that I saw. Oh, and when I got into the theatre, I could see there were two folded transport chairs belonging to the theatre on the inside, further reducing the available space. Again to credit the staff, these were removed after I commented. But overall, not great accessible toilet facilities which many wheelchair users would find troublesome.

I will be working all of these worries into an email to Delfont Mackintosh.

& again, don’t worry, the show itself was awesome 🙂

*Update 09/01 – Someone kindly sent me the theatre’s (out of date) access page which states that there are FOUR wheelchair spaces, and they’re somewhere in the middle, not right at the back. I wonder why they changed this? More for the email… 

*Update 30/03 – Hello again! I’ve had some replies from the operations manager of the theatre, who was very apologetic and impressively keen to rectify the issues I raised. In their response to my email, the manager promised to sort out the levelling of the wheelchair spaces (they now have a wedge that non-tilting wheelchairs can use, which should be offered by the access host on arrival), to instruct staff never to store the theatre’s own wheelchairs in the accessible toilet, and to replace the inwards-opening toilet door with a bi-fold one. All of these things seem to have been done immediately after my email (although I have had reports of wheelchairs stored in the loo again, which I have fed back), and in addition I have been told there are wheelchair spaces available in the stall-level boxes (which have a level floor), bringing the total number of spaces per performance to seven. Thanks to everyone who’s been to the show since who’s shared their experiences with me about the improved access. If you’re going to Hamilton in London soon, and are a wheelchair user or will be using the accessible toilet, please let me know how the access was as I am eager to know how much difference the improvements have made the experience for disabled fans!